Seraphina's World

Day 8 in the big brother house

2012-02-27T11:51:00.000-08:00

The title of this post is a bit of a joke.David started it and I've a feeling it will continue through the weeks.
it's been a really tough week to say the least but one where I have felt overwhelmed by the unexpected support from my Facebook friends and other special needs mums.from an unexpected package, lots of supportive comments on my facebook wall , wondeful pledges of prayer from followers on twitter to an anonymous Dominos pizza order for me it's all happened this week.

I have tried to keep people informed via Facebook but for those of you who don't go on there this is what happened....
When we got admitted Seraphina was in a poor state, she wasn't tolerating feed or dioralyte, she had diahorrea and every nappy contained blood.she was sweating with pain and no- one really knew what was going on.
She had bloods done and was out onto IV fluids via her port.after a chat with the consultant they went to book an endoscopy and colonoscopy for the 1 st March. Once they realised how much pain she was in they decided to do it on Tuesday afternoon.
She went down to theatre and I got given the familiar pager which would go off when she was in recovery and they were ready for me.
When it went off down I went expecting to be called straight in to see her. I wasn't , instead I was called into a private room to talk to the surgeon who had carried out the colonoscopy. That's when alarm bells went off.

He explained that their findings had been extraordinary .Seraphinas colon was visually like bubble wrap so close together were the ulcers and sores and the surface of the colon which had bubbled with gas and inflammation . E surgeon was so concerned about doing a biopsy that he phoned the gastroenterologist to check he still wanted one given the state of her bowel.He did. Unfortunately when he took the biopsy he described it as 'trying to biopsy cling film' and her bowel perforated. he said that Seraphinas bowel was so bad that it would never recover and she would not be able to be fed via tube again...it would be TPN only ( which is feeding via a vein)

The days that followed Seraphina required more and more morphine and other pain medication had to be added in,she bled out of her gastrostomy, her heart rate dropped very low..so low in fact that unknown to me then they had to call the resuscitation team who were sitting in a side room in case they were needed for a few hours.
Saturday was an exceptionally bad day..her bowel spontaneously perforated again and we were told it could happen again at any time. for safety's sake she was already on multiple antibiotics.
Today has been better, she's still on morphine but not needing as many boluses and has sat up in her chair for a while.
the plan is a long one. in 2-3 weeks she will go back to theatre to see if 3 weeks on TPN has improved her bowel any. She will have an endoscopic evaluation,something called a wireless camera, which is a little capsule which will travel through her G I tract taking photos every 2 seconds ( this is the only way they will be able to see her small bowel as it was too fragile to look at endoscopic ally ) she will have a laperoscopy and CT scan to look at the outside of her bowel. Depending on the results of these tests it is thought she may well be better off without her colon and so she will have a colectomy and a stoma placed.

I can reel all this off quickly now but on Tuesday evening I was in shock...total shock. I was also so angry, having been told that the prognosis/ life expectancy was now poorer than we had thought before. if the cure for Rett was found tomorrow it would still be too late to reverse the damage it had ravaged on my little girls insides.
So we are in another 3 weeks till surgery and then they have said around another 7 weeks afterwards....a loooonnnng time.
when she comes out she is going to be spoilt...she has wanted a cat for a while and so by hook or by crook I want to get her one. bless her even on the worst days when lying lethargic and worn out from pain, the nurse said to her "are you getting a kitten?' Nd her eyes lit up and she smiled that captivating smile that only Rett girls seem to possess.... Somehow we will find the money to buy her one.Its the least we can do after all she's going through.

Thank you for all the precious people who have supported us through this week.thank you for all the prayers...it's so good to know that there is such a cry to heaven going on for my gorgeous girl.

To be continued.....

One Word

2012-02-16T01:28:00.000-08:00

This year I decided to join 'One Word three sixty five' as an alternative to new years resolutions.
My one word for this year was - Strength.

Since choosing this word I seem to have had many opportunities which require it. Strength of mind, of character, strength in my faith etc neer mind physical strength.

Seraphina has not being doing so well. We havent had much in the way of stability over the last weeks. one minute shes up and her gut seems to be coping and the next shes down and having diahorrea and bloating in her tummy. Shes also picked up infections really quickly requiring antibiotics which mess up her gut even more. We have had many really close calls with hospital. but we have got through them.

Now however is a different matter, shes had another bowel bleed, not masses, but enough. she had to be put back on dioralyte as she wasnt tolerating feed, shes lost another kilo and a bit in weight over the last two weeks. The childrens Nurse and the dietician phoned the hospital...so did I.

The consultant phoned me yesterday. He wants Seraph admitted indefnitely, to start her on long term TPN which means she will be fed through a vein. she will have surgery whilst in to find out whats going on and how to treat her for the best. He has mentioned in the past that she may be better off if we remove her Colon. ?? whether that is correct or if that will end up happening.

Im scared.

I know there are other mums out there with daughters on TPN, I know it helps enormously, but I also know that long term it kills...by destroying the liver. TPN is a last resort.

I need strength...Strength for Seraphina, to let go and realise I have done all I can to keep her at home and enterally fed, to love her and help her through this next step on our Rett journey. I need strength to keep myself going when all I want to do is curl up and cry and need strength to walk away from my children on Monday morning (Eve's 9th Birthday) to drive over 100 miles away to hospital when I dont know how long it will be before I see them again.
Every time I leave them I see their hearts and mine break a little more.

God give us strength because we cant do this alone.

....and Christmas came early

2011-12-09T01:44:00.000-08:00

As many of you know we have had a tough few weeks. Seraphina s still only tolerating half strength feed, she has lost a considerable amount of weight. We went up to Sheffield again and have had to start another medicine called azathioprine which is an immunosuppressant as well as pushing the steroids up to maximum again as she doesnt tolerate them being lowered.
We saw the opthalmologist this week who again confirmed that she has a cortical visual impairment (although not too bad) and then we saw our local consultant who looked at a lump I had been a little concerned about in her tummy and confirmed it was an incisional hernia (her bowel has herniated through a past operation incision ) so this means another op for my girl to fix it.
Then we had to go to hospital twice with temperatures so that they could check her blood cell count due to being imunosupressed so they could see if she was able to fight off the infection and have medicine accordingly.
Life seems to be a game of ''hospital hokey cokey' at the moment and the other children are also feeling the strain,particularly the eldest three, . their schools have been good reducing the amount of homework they have to complete and we have spoken to them all and prayed together but Its hard when they ask you why God hasn't healed Seraphina completely yet.

I have no answers for that ... my faith is still strong ,but my longing to see my girl healed is too.

Yesterday was one of 'those' days.I was looking at the photos and pictures we had taken only a few days ago ...Seraphinas 5th Birthday.How my heart ached to see her eat some cake, open her own presents,blow out her own birthday candles...speak and run around like any other 5 year old girL
She had spent the morning crying with tummy ache, hadnt been well enough for physio for months and was having more spasms.

I cried out to God ...WHY?? Have you forgotten her ??? PLEASE show me you still care...that you remember my little girls name!!!

I immediately felt bad about my outburst even though I knew that God didnt mind.

For my thoughts are not your thoughts, neither are your ways my ways, declares the LORD. Isa 55:8

came to mind and I left it there and carrried on with the rest of the day.David had one of his rare working from home days and we had an appointment in the afternoon.

and then, a couple of hours later....with Gods help my little girl gave us the BEST Christmas present we could ask for

I grabbed my camera phone straight away and tried to capture some of it on film before she got too tired...she had already walked the length of the living room from the hallway and I just got the tail end of her walking here...Im sure you get the idea :-). She had walked with assistance for the first time a few months ago but this was something else!! watch out Christmas tree this year :0) !!!

I know many of you wont agree with this but this is WHAT I believe

God hasn't forgotten her...things may not be panning out the way I thought they would,or hoped they would but he DEFINITELY hasnt forgotten her and I believe this is what he was trying to tell me.

HIS ways not mine....always.

Tidy your room!

2011-12-01T02:58:00.000-08:00

How many times a week can I hear myself shout this up the stairs to my children. Ive threatened no pocket money if they dont get it done.I have pleaded with them to move stuff before I literally break my neck over stuff that has been strewn across the floor.
Ive also gone into their rooms much to their dismay with a bin bag and thrown stuff away when they havent tidied up.

Im having some little trousers made for Seraphina and the ebay person asked for her waist measurment and leg length so I went to my bedroom to find a tape measure. I couldnt find it.
I decided to look in my bedside drawers..I pulled the first one open to be showered with bits of paper overflowing from it...oops, maybe I should tidy this. I pulled it out and masses of stuff fell out the back and onto the next equally overflowing draw and onto the floor where my mountainous pile of books toppled over *blush*...how did the pile get so high???!?

I started to go through the drawers bit by bit and was initially horrified at the mixed up jumble of things I found h broken hair accessory, a scribbled on envelope, a squished lipstick, a toy train, receipts, notebooks, hairbands,a bookmark the list is endless...bits of paper folded up with notes on a chocolate wrapper......ok more than one :-)

Then I looked more closely..each item told a story

The hair accessory was one I had bought and Eve had pinched without me knowing when she was about 4, I still remember her coming downstairs in one of my dresses and high heels with this pearly hair accessory twisted crookedly into her hair which was tumbling out of it one side and sticking up at a comical angle the other side.I was all ready to shout at her for pinching it until she said she was trying to be ''princess mummy''........and she did look really cute.

The scribbled on envelope contained a little tooth and on the front David had written 'To the tooth fairy'' and then it had been painstakingly signed by a very little boy ''J o s e p h'' surrounded by lots of kisses and a drawing of a car.

The reciepts were from things bought a few Christmases ago, things they had been 'desperate' for and I had felt so over the moon at being able to get...I laughed as I read them because can still hear their voices as they nagged me for the hundreth time and I had already got the things secreted away :-)

The bookmark was from a Christian event I had gone to...I was so desperate for a little brother for Joseph but it wasnt happening even though I had felt God say he would answer my prayer. Someone prayed with me that night and at the end of the night everyone got given a bookmark..mine said ''God always keeps his promises ''............and he did only a month later when we found we were expecting Samuel.

The squished lipstick was one Aimee 'borrowed' aged about 3 and covered her face in it whilst the train is a spare Thomas the tank engine of Josephs that he wrapped up for my birthday one year ...

These are all things which would look like rubbish to someone who didnt understand, but each one is a memory.

Memories, each one so so special....Im a squirrel, I admit it and I think my children have inherited the 'squirreling' gene.
I'll still be asking them to tidy their rooms.....but maybe I wont be so ruthless when throwing things away and let them keep thier memories too.

Ive also made a decision
This year Im going to give my children a different present, one I have only done once before and one which money cant buy.

Im going to write them a letter each, with all these memories in, memories individual to each of them, little reminders of their growing up, how loved and special each of them is and how blessed I am to be their Mum.. meanwhile I might put this stuff back and save tidying my room till another day :)

Let me tell you about...POST PALS

2011-11-17T09:58:00.000-08:00

Ive been wanting to write this post for a while as this charity has become very close to my heart.

Most people know how much Seraphina has to go through on a daily basis, what I dont often talk about is how much the other members of my family go through too.
My other children..Joseph Thomas patrick,
                               Aimee Hannah Joy
                               Lydia Catherine Grace
                               Eve Angel Hope
and not forgetting Samuel Peter Jacob

These sweethearts go through SO much too, they are my heroes.They cope with the heartache that an absent parent brings when they are once again unavoidably detained at hospital to care after their sick sibling. They cope with the crushing disappointment when a parent cant come to their class assembly,parents evening or school fair because they are away or their sibling is too unwell to be left.

There are lots of charities out there which cater for grants for special needs children..all geared towards the needs of the special needs child but POSTPALS is different....wonderfully so.

Post pals was set up by a lovely girl called Vikki who herself is very ill with M.E and at the time Post pals was set up was totally bedridden, the gorgeous Vix is also poorly with M.E as is Kate.D..how wonderful that these people, all with their own illness to contend with, should stretch out a hand of friendship to extremely sick and life-limited children AND their families all over the U.K.

The concept is simple, the results are life changing.
My little girl has had postcards from all over the world with her favourite things on them...shes had lots and lots of her beloved bath ducks sent to her (we may even have to build a second extension to house them all :-p) shes had thoughtful presents like a pair of long fluffy socks sent to her from Finland. Even lots of cut out yellow chickens sent to her at easter....painstakingly cut out by a primary school class each with the childs name on.
and her siblings....they are also included too. Ria ( a postpals volunteer) made them all pillowcases with their names on and their favourite TV characters...you should have seen thier faces when they got those! they have had cards, letters and small gifts, each one which bought a smile to their faces and a realisation that people cared about them too and how they were feeling. This has been such a blessing when I have been away from home.
Of course I must not forget the Dotty project. a lovely spotty dalmatin puppy who had siblings sent out to every sick child and their family..we named ours Bottomly Potts. Dotty has amazing adventures and always keeps us ''posted'' (sorry couldnt resist) on what shes getting up to.

Post pals are wonderful...
Its amazing how a simple postcard with a ''Hello, just sending you a smile'' can have such an impact on a tough day.
From the Christian members of Postpals we have recieved prayer support which is just as important...prayer is powerful and changes things.
Even Mums arent forgotten as I found out recently on a long hospital stay. I got sent a ''Hospital survival kit'' Its hard being in a hospital over 100 miles away from home.Visiting is limited because of distance and often (as in this recent admission) unplanned so you end up having nothing you need with you.
This arrived and ...Ill be honest, I cried. it was totally inspired...whoever thought of these boxes deserves a medal. Inside there was everything you needed to literally 'survive' a hospital stay.From sachets of hot chocolate and cofffee (Mmmm...coffee!) to a travel toothbrush and toothpaste, showergel and deodorant (which as every mum knows who has slept in her clothes wiothout hope of a change of clothes for another 24 hours YOU NEED!)

I even got sent by a wonderful person...a book by Jane Austen (My favourite author) How spoilt did I feel!!!
As wonderful as all these things are....its the meaning behind them thats the most important thing....you arent forgotten. There are people out there who read updates on what is going on, who CARE whats happening to you and your family.
Most recently Seraphina has been suffering with sore painful ulceration and weeping at her jejunostomy site...Postpals came to the rescue again.They made and sent something called ''button buddies'' which are a simple design of circular cotton with absorbant backing which just fasten round the base of her jej button and protect the site from moisture whilst allowing cream to be kept on and soak in. They hae been FANTASTIC...her site is so much improved since wearing them....Seraph has even got into chosing her own button buddy for each day which has also helped with the psychological issues she was developing around having her button cleaned.

What I want to say is a HUGE 'THANK YOU!!!!' to Postpals for making my children (and me)smile.
and to anyone who is thinking of supporting postpals either by writing a letter to a sick child or giving a donation finantially.....DO IT!!! :)
Thanks for reading

www.postpals.co.uk ...go on..make a sick child smile!

Seraphina with a card sent to her by St Patricks R.C Primary school, Cardiff. thanks guys x

The GP, a Nee nah and a Sheffield trip

2011-11-15T08:42:00.000-08:00

We've just walked in after a trip to Sheffield Childrens again.Its been a bust week or so and so I thought I would blog to bring you all up to date with where we are at.

We have been struggling to try and get Seraphinas feed up, so far we havent managed it although when her steriods were increased back up to the max after trying and failing to wean them down we noticed an improvement in her straight away. we are now on just over half strength feed but have not managed to get any further.we have still had bleeding on and off but not as much as before.
On friday I decided to take her to the GP as she had what startwed out as a very small yellow hear kind of thing on her chin...but then it kept coming up to a head, bursting and then getting bigger,coming up to another head bursting repeat repeat, till it was almost the size of a 10 pence piece and very painful for her. As I didnt want it getting worse over the weekend and she had had a litle bleeding I decided to see the GP for er opinion and ask them to check her HB.

Well to cut a long story short the GP took one look at her and called an ambulance...she didnt help herself mind you by having a seizure at the surgery! The GP felt she looked pale enough to need a transfusion and the spot/boil on her face was definitely infected.
They sent an ambulance....but the men apparently couldnt take her (wrong ambulance apparently?!?)
As she had a seizure and was out cold the ambulance men put her on thier SATS monitor (much to the great interest of everyone else in the waiting room who began to stare at her like she had three heads or something) and ordered another ambulance the HDURV they very importantly told me. ''rrrright I said....which means??'' '' Oh its the High dependancy retrieval vehicle''...I enquired whether she needed that level of care and was assured she did...the only hitch being that it was coming from Birmingham....in the rush hour....45 mins away *sigh*

Im not sure what happened next but they changed it to another vehicle which was closer and another 45 mins later (yes this is 2 hours later for a 999 ambulance!!) when the surgery staff/GP and practice manager were all ready to rip the ambulance mans head off, the ambulance arrived....
............only for him to say ''sorry I cant take her'' *cue me mentally slamming my head up against the surgery wall * but in reality saying rather curtly'' WHY NOT?!?'' apparently they couldnt take her as they hadnt got a sats monitor on board. I suggested that they borrow the sats monitor from the other ambulance to go over with but they said horrified ''oh no! we cant do that!!'' as if I had suggested the Queen herself run naked through the street

At this point I got a little bit annoyed (just a little !) and told the receptionists what they said..they assured me very loudly that they were logging all this down as a complaint and suddenly they could travel. The man from ambulance 1 accompanying the SATS monitor on ambulance 2 ( in case it got lost obviously) still attached to Seraphina...along with Ambulance 2's two crew,whilst the other crew member from ambulance 1 drove on ahead. SO one simple trip to escort my daughter to hospital required 4 ambulance men and two ambulances (work out what a cost effective way of using taxpayers money that is!!)

At hospital they took numerous bloods and found her iron level had dropped but not, thankfully,low enough for a transfusion. Her infection markers were up and so antibiotics were prescribed for that otherwise we were allowed to go home as we were in Sheffield on Tuesday anyway....what a day!

Today has been the Sheffield trip. The decision was made to start the Azathioprine now as she was suffering quite badly from nasty side effects from the steriods (increased anxiety, agitation, more seizures, self harming and increased ''Rettness''where our little girl is incredibly hard to reach) at such high does and when we were reducing them slightly her gut wasnt liking it.
he had the results from her biopsies which showed lots of eosinophil infiltration (for my 'gastro friends') and abscesses throughout her colon. I can understand why she has been in so much pain.

The consultant was concerned that her iron level had dropped so quickly and explained that in the cases where an inflammatory bowel diseasecalms but she keepas bleeding then a colectomy may turn out to be the best option for her along with TPN but we are trying the azathioprine first which is another immunosuppressant to use along side the steroids. other medicines have also been raised as it was agreed her bowel is doing absolutely nothing at all on its own now and 48 hourly suppositories arent very nice for her at all...though may be neccessary if these meds dont work and her bowel has completely shut down.

She will also be having weekly bloods from now on to monitor her..
She is about the same weight-wise at just over 17 kilos which is pretty skinny for a child of 3'10'' but at least she hasnt really lost any more.

Your prayers as always are very much appreciated both for Seraphina and that breakthrough which will enable a cure for Rett syndrome...one day.

The news from Sheffield

2011-10-28T01:38:00.000-07:00

Ive tried to think of 'clever' ways of writing this blog post...but quite frankly I cant write for an audience. I write how I think, what I think and so apologies in advance if it ends up being a bit of a jumble but thats the way it is.

We went into Sheffield Childrens yesterday,the journey up there was diabolical...heavy rain and then a 4 car pile up on the M1 meant that there was no way we were going to meet any appointment time and so I had to phone ahead and tell them we were stuck in a trafic jam. Those who travel to Sheffield childrens will also know how awful...or non-existant the parking is now so the thought of having to arrive in the middle of the day wasnt filling us with glee. On a previous appt David had had to park half an hour away and wait for us because there was nowhere to park so that he could come to the appointment too. We asked friends to pray hard.
We got to the Childrens at 12.00.....and drove straight into the only disabled parking space! we both said 'Thank you God!!' as the likelyhood of that happening was almost zero. I was pleased that both of us would be there for such an important appointment.

When we got there the Consultant had gone but they bleeped him and he very kindly came back up to speak to us. Seraphina was weighed...unsurprisingly she had lost weight again..she now weighs a kilo less than she did at 2 years old and her little ribs are sticking out.

Our Consultant had laised with a gastroenterology consultant in Great Ormond street Hospital in order to get the best plan and outcome for Seraphina.

He was fully informed about Seraphinas condition and took the time to answer all of our questions but the outlook in his own words was bleak for her.

She has a rare (but not unheard of) complication of Rett syndrome which behaves like an extreme inflammatory bowel disease and ends up in complete intestinal failure. He said Seraphina seems to be moving quite rapidly towards this and TPN shortly will be our only means of feeding her but , he is willing to try and hold off by using other medications for as long as possible. He explained the fact that it looks like Seraphinas Jejunostomy has ulcerated underneath and thats why we have the rawness and begingings of ulcers coming through the surface. This will have to be investigated sooner rather than later but for now we are back on the maximum amount of steroids and he wants to introduce a drug called Azthioprine which is another immunosuppressant to try and get the inflammation down as much as possible.
There are other procedures which she may have to have done but I wont go into them here...just to say they arent pleasant.
He also discused with us disconnecting her large bowel completely and doing an ileostomy but we felt that this wasnt an option at this point particularly as none of the treatments will cure her they will just buy us more time.

At present she is only just about tolerating 20% concentration feed and that is with discomfort and bile...if we cant increase that over the next few days then we will need to go back to Sheffield to be admitted and potentially start TPN. No-one knows why her gut is failing suddenly quite so quickly but agreed with us that even back in 2009 when she had her volvulous that could have been caused by this disease in her bowel and by some miracle of God have managed to keep her ticking over for this long....there are no answers.

So, this is where we are now. To say that we were both in shock last night is an understatement. We both knew that there was no cure for Rett before but we werent expecting to be faced with the very real prospect of losing our little girl quite so soon...the future seems so uncertain right now and although my faith in God is very strong I still...hae to ask 'Why?' as the thought of not seeing that gorgeous smile and hearing her giggle, snuggling those wild curls and giving her eskimo nose kisses seems more than I can bear.

But I refuse to let this news beat me, beat us as a family...if the Rett monster wants my girl he's going to have a fight on his hands.
As long as my girl is smiling then so must we. I dont know what will happen in the future but I DO kow that God STILL has my girl in his care and why I dont understand why He is allowing this to happen, God is still God.
He may work another miracle just as He has with her walking and with her no longer needing oxygen...He may not

Im praying for that Miracle anyway....with all my heart.

and in again...

2011-10-26T03:34:00.000-07:00

Just a quick post update.
we have only been home over the weekend and Seraphina is still not tolerating feed. Each time we try she seems to be in pain and the amount of dilute feed we get to before she gets upset seems to be less and less. she has had diahorrea again too with blood in it.
Sheffield wanted to admitt her yesterday afternoon and said they had spoken to Great Ormond street about her but when asked what the plan was they didnt have one. so instead we are going tomorrow morning to meet with the consultant and try and thrash out a way forward for our little girl.

The difficulty seems to lie in the fact that not many girls with rett syndrome have this extreme of problems with their gut..its like a kind of intestinal failure but no-one knows why or how to treat it. Seraphina is one of only 4 girls who have had this extreme problem for which as with the rest of Rett...there is NO cure yet.

The chaplain who came to visit us in hospital asked me whether I was angry at God for what was happening as he would be. the answer is categorically ...no. Im not angry. God hasnt 'made ' this happen.What I dont understand is 'why'., not why us as a family because the answer to that is simply 'why not us?' but why Seraph has to suffer so...it breaks my heart to watch.
This is where faith comes in...I dont understand why but God is still God, God is good...not some of the time but ALL of the time so I have to trust that although I dont see the plan in all this, there is one, and one day I will understand.

So today I am once more packing our things together for a hospital stay...I dont know what tomorrow holds,Im still praying for that miracle but I know whatever happens God has my Seraphina in his care.

Home for how long..?? Rett syndrome awareness

2011-10-24T09:20:00.000-07:00

Well we are home after 3 weeks in Sheffield Childrens hospital.
A totally unexpected stay...we went for a routine clinic appointment with the surgeon. I had phoned the surgeons secretary at the begining of September and said that Seraph was losing blood in her nappies but the earliest we could be seen was the begining of October...well we saw the surgeon and he asked for a routine full blood count (iron level check ) as I asked whether he would do one and he acknowledged that Seraph looked ' a bit pale'
on the M1 motorway on the way back we had a phone call...come back to the hospital as Seraphinas HB was dangerously low....5.5 in fact!
we drove back to the hospital and within a few hours we were on a ward and Seraph was getting an urgent blood transfusion.
It was decided to do a colonoscopy and endoscopy once her HB level was up sufficiently to see where the bleeding was coming from.

I think I went through it all in auto pilot, so shocked was i at the level of her HB. It was only when she had gone to theatre I started to think..and kick myself for not realising sooner how sick she was. Now we are home I feel pretty much the same...WHY didnt I realise sooner..and how I wish I could ' make it all better' ...thats what Moms are supposed to do right?

After the colonoscopy the Consultant Gastroenterologist came to see me and told me that Seraphinas entire colon was inflamed and bleeding. He said it could be either infection or ( as he suspected) inflammatory bowel disease associated with Rett syndrome.
They put her on very strong I V antibiotics and waited for the biopsy results to come back. I explained that we had been struggling with feed for a while and she could only tolerate 5-6 days on feed before we had to drop to dioralyte again. They tried to re-start feed and everything that they put in was just coming straight back out again. she was in such pain she had to have a continual infusion of morphine to keep her comortable.

we werent getting anywhere. even after the antibiotics were stopped they couldnt get her to tolerate even 5 mls an hour of feed. she was put on TPN which is feeding throgh a vein...no a good long term solution bwecause of the side effects opn the liver etc but for short term it was just what she needed.
they also started high dose steroids.
within 24 hours the diahorrea had stopped and she was sitting up on the bed, not needing as much morphine and smiling that absolutely heart melting smile of hers.
The consultant said that it was definitely inflammatory bowel disease but that the steroids should sort it out. his collegue said that they didnt honestly really know what was wrong but ashe was behaving like a child with inflammatory bowel disease.

then...they tried feed again.

and along weith it the teeth grinding started as did the picking at her hands until they bled. still they pushed up the feed and eventually turned the TPN off. withing 24 hours of coming off TPN we were sent home..still on steroids but on a reducing dose.
by the evwening of the same day Seraph was back to diahorrea, horrible mucousy stools and a painful tummy...ooh not forgetting the bleeding bottom.
I phoned te childrens hospital in the morning and the dietician told me to stop the feed and put her on dioralyte and then gave me a plan to follow to try and build up feed again.she said she thought the consultant hadnt realised exactly how fragile Seraphinas bowel had become.

Needless to say we have had to 'relax' that plan a bit and take it a bit more gently even than the dietician said but we are getting her to tolerate feed very very slowly. she is grinding her teeth again and her tummy once again today looks bloated but she is smiling on and off...by beautiful brave girl. I so wish she could tell me how she was feeling, whether her tummy hurt...so i wold know whether to increase feed again or to let it be.
She was so much better on TPN but that is not the answer...thats a last resort.

we have had no follow up phone call from the dieticians either here or at the childrens which is disappointing...we feel like we have just been left to 'get on with it' as they dont have any answers.

we are due to go back to the childrens hospital on the 15th...if we can keep her 'well' till then.

Im sorry if this post has seemed a little bleak...but this, at this point in time is a brief glimpse into what Seraphina has had to face on a daily basis due to the ravaging effects of Rett syndrome and its associated conditions.

October is Rett syndrome awareness month. Throughout this month many parents of litle girls who suffer just like my little sweetheart have been posting to raise awareness of this little known disease...a disease which has taken so much from my gorgeous girl.including her ability to speak.

However there is hope...Rett sydrome has been reversed in mice..it is potentially REVERSABLE.
But research takes money...PLEASE consider donating ...any amount you have to the Rett Syndrome Research Trust http://www.reverserett.org.uk/ and help speed a cure for my darling Seraphina and girls like her.

Thank you.

12 months

2011-09-08T13:56:00.000-07:00

Tomorrow it will be 12 months since we received Seraphinas diagnosis.
This evening I got a message from a friend who was pregnant the same time as me but who I havent heard from since then asking me how Seraphina enjoyed her first day at school and attaching a photograph of her smiling little girl standing up straight in her school uniform.

It cut me to the core.

Dont get me wrong, Im not angry or bitter at this lady...she didnt know about Seraph and Im so pleased for her and her little girl (who incidentaly looked gorgeous in her school uniform)..But its times like these that it hits you again...everything goes ticking along quite nicely and then WHAM!...pain....like rubbing salt into a fresh wound..it stings.

Its also not that I 'feel ashamed' in any way of her...Im as proud a mummy as ever lived...my girl is an absolute star,I just wish it didnt have to be this way.

God has been doing some wonderous things in my little girls life, my life and the rest of my family and for that I am so so grateful BUT....I am human and sometimes....just sometimes...when you think you have 'come to terms' with your daughters condition and everythings fine....WHAM! you get hit a curveball and reminded of what could have been....
....and it hurts...it hurts real bad.

Never too late

2011-08-31T12:05:00.000-07:00

This is a post I have been meaning to write for a week or so...but something always 'got in the way'. he middle of Summer holidays children everywhere (well it seems like it at times) and a feeling like I need 48 hours in a day :)
Maybe God was keeping it back till now, I dont know,I just know that as I was awake last night with Seraph my heart was aching, not for myself but for another couple,another precious family of Gods which had been hit by the 'Rett Monster'

''I thought I would teach my daughter about the world but now it seems I will have to teach the world about my daughter'' as soon as I saw these words posted I KNEW.
with my breath held I typed ''why?'' already knowing the response. When the reply came I couldnt help myself...I cried. I cried because I remember all too well the earth shattering nature of genetics results, the dazed first few days when you get a diagnosis.
The fact that I had 'randomly' (to some people) crossed paths with these people .....well maybe it was Gods way of handing out a lifeline as Kelly from GirlPower2cure had handed me almost 12 months ago....I would like to think so.

And so I needed more than ever to write this post.
Seraphina....now almost 5...on 27th November. has had more than her fair share of problems surviving being born at 25 weeks, having Cerebral palsy (albeit mild) being ventilated 3 times, numberous blood transfusions,operations,tubes inserted,....
Rett took everything..her speech,her ability to weight bear/stand..she only ever took a couple of faltering steps and fell so never walked, her ability to feed, even her ability to tolerate feed in her stomach via tube so that she is fed through her bowel, she never said Mama something that I cried out to God about...that hurt so much...she hand wrings, self harms,has seizures, breathing abnormalities etc. currently she is on 27 doses of medication a day...a lot for a little one.
and here we set the stage ...Miracles DO happen...I witnessed not one but two recently.
Here is the first.....http://youtu.be/QnLi7iI5J-g
This is my little girl walking for the first time.Anyone who knows us personally or from Facebook will know that a couple of months ago along with the physios we had had to abandon the idea of using a gait trainer/walker with her as she couldnt take any weight through her legs at all and it was unfair on her to keep trying. Then here we are again with the physio and she does this!!
From one week not taking any weight at all to the next walking with only the support of holding someones hands...the physio was just as astounded :-)

And then the second miracle a week later...my little girl put out her arms to me and said something I thought I would never ever hear...she said 'Mama'. My little girl who doesnt speak, who hasnt said anything since before the regression phase of Rett when she said 'Bye bye' at about 12 months. There arent words to describe how my heart melted at hearing that word. She has said it just once since then and it was wonderful.

So what I would say to this new Rett family is NEVER give up hope, with God ALL things are possible, I cannot promise you a cure but I know that with God ANYTHING can happen. You are not alone.

Seraphina is not well by any means, her bowel is slowly shutting down leading to frequent 'rests' on dioralyte, she still has a life expectancy of around 6 according to the Dr's and TPN has been mentioned but thats another post..another prayer and hope in God.

I dont know what the future holds for her and us as a family - but I know who holds the future.

'Sisters'

almost a year

2011-08-06T15:13:00.000-07:00

Its almost a year since we received Seraphinas genetics results, a time when life as we knew it fell apart. when the maybe's we darent face became realities, when hope (except from a miracle from God) for a full recovery were lost.
oh my....what a year its been!.whilst keeping up the front of having it 'all together' I have fallen apart...we all have. I have reached the depths of despair personally, felt my life crashing around my ears.

But........God.

Some people reading this will undoubtedly go 'oh no! not another God mention' but..as I have said time again I will not lie, my blog is from the heart. When I had reached rock bottom....God reached out to me..In my total despair I was not alone.

Tonight,I want to thank God for my littlest daughter.

Seraphina you are the world to me, life may have dealt you an awful blow but you have risen above it...indeed you have done more than that, you have soared like an eagle, as though this life cannot touch you. you are a star..your beautiful smile, your spirit which is never defeated. Seraphina I love you and admire you so much.the way you have dealt with this puts me to shame.you suffer so much and yet you smile SO much.

When you are going through such a tough time you need friends..you value your friends so much...you find out who your true friends are. I thank God for all my friends.
There are many people who have helped me along the way..particularly in the last 12 months...who have helped my family
Tonight I want to thank them and ask God to bless them as they have blessed me....

To the stranger ? I dont know who who phone my children before Christmas when I was in hospital with Seraphina and couldnt buy them presents. He pretended to be Santa and told the children to look outside. ....outside was a sack of presents. Thank you...you made my familys Christmas...I wlll never forget the wonderful thing you did xxx May God bless you.

To Dave Hodges...Thankyou for being Gods taxi, for being there when I needed to do a rushed trip to Sheffield Childrens hospital, for being willing to just drop everything and ferry me and Seraphina up there. you and Sarah and your precious children mean so much to me. God bless you all.

To Penny...thank you sweetheart for all the little things...the trips to Asda as silly o clock, the chats in the car post schoool run, the fact that you are there for me at the end of the phone, the fact that you miss Ann as much as I do and I can talk about it with you without feeling silly + numerous other things.

To Claire Paxton... thanks for making the vest for Seraphina..we have used it so much, the poppers are falling off now but it has been so valuable for keeping Seraph warm particularly when she has been really poorly and unable to regulate her body temp properly.you have helped me more than you know...you are an utter star to me xxx love you lots xxx

To Rachel...my lovely university friend, bridesmaid and best buddy. Thankyou for being there, by making my life better just be knowing you are always at the end of the phone. but persisting even when I am at my lowest, by all the numerous ways you have shown yourself to be an angel to me...we have a lot of history together you and I...and I thank you for every precious moment of it. I was truly blessed when I met you. I love you so so much xxx...words arent enough xxxx

To the person who sent the silver heart...I honestly dont know where it came from or how it came to be in my coat pocket but the times i have put my hands in my pockets in times of stress and found it to be there are numerous, thank you for the blessing it has been to me, the reminder of Gods love and peace.

and lastly but not least to God, who has made all this possible. who knew how hard we would be hit by all of this and provided a framework of people to support me and my family through it all. I have willingly given you my life and even this isnt enough...I would never be able to repay you but, you dont desire that, you want my heart and you have it...I love you God... forever and always.

I thank God for bringing me and my family through the last 12 months,for helping me personally to a much better place mentally and spiritually..life is good

and where are we now?... to coin a phrase from another beloved friend of mine Tina Hillier....I dont know what the future holds but I know who holds the future.

'I can only imagine'

2011-07-29T13:21:00.000-07:00

''Surrounded by Your glory, what will my heart feel ?

Will I dance for you Jesus ?or in awe of you be still ?

Will I stand in your presence ?or to my knees will I

fall ?

Will I sing hallelujah?, will I be able to speak at all ?

I can only imagine

I can only imagine''

I've had the Lyrics to this song by Mercy Me ( my recording on the Soul Survivor album) going round and round in my head for the last 24 hours or so. I have listened to it many times before but yesterday when I played it with Aimee and Lydia the words really struck me...what will it be like? How will I feel when I am standing in front of Jesus?

Wow! WHAT a thought....one day I will stand face to face with Jesus...one day I will see HIM...I get butterflies in my tummy just thinking about it and the certain hope I have...I KNOW it will happen one day.

I guess the only thing I can liken it to is what happened to me is after emailing and texting..even MSN'ing someone I met online. even seen a photo of. I had 'chatted' via cyberworld for months..shared secrets/fears/hopes and dreams and had become very close...I considered her a good friend, we thought alike is lots of things. One day we arranged to meet up in person.
The night before I had butterflies, and yes occasionally felt a bit nervous 'what if she didnt like me after all?'

I arrived at the meeting place far too early and nervously played with my mobile phone. The I spotted her around the same time she spotted me..our eyes met and all fear was washed away, we just threw our arms around one another and hugged, our long chats and shared moments over the months meant we knew each other inside out and there was a connection, love and respect between us.

You know I think thats what it will be like when I meeet Jesus. Yes I will probably be a little nervous but as soon as our eyes meet...theres going to be no fear.I will be looking into the eyes of perfect love..of someone I have 'chatted' to for not months but years, who I have shared my hopes and my dreams and fears with.Someone who has been there for me and loved me through the good times and some really tough times.
you know what...I think my response will be the same as when I met my friend for the first time...we will just run and hug each other.

What a wonderful wonderful day this will be!...Im SO excited...Im sure my words dont do it justice ,but then at the moment....

...I can only imagine.

Holiday time

2011-07-26T05:36:00.000-07:00

We have just come back from our holiday.It was something we had looked forward to since January, we had saved hard to afford the booking fee and were going to a house owned by the Harriet Davis trust as it was specailly adapted for disabled children and had everything we needed.
The house was in Wales..Tenby to be exact, somewhere we had never been before..we were ALL extremely excited and prayed hard that Seraphina wouldnt be taken into hospital so that we couldnt go.
Well Seraph was healthy and so off we went...

The house was everything we had hoped and the view from the top window of this three story house was over Caldy Island which is an island owned by some monks who lived in the Monestary there and grew lavender which they made into soap and lavender bags.
I SO wanted to go over to the island and the housekeeper who showed us round the house told me that it was possible to take wheelchairs over too so we were resolved to go as soon as possible :)

We arrived at the house on Saturday afternoon...on Saturday evening Seraphina had a mild temperature.At first I didnt think anything of it but by the early hours of Sunday morning her temperature had spiked worryingly high and refused to go down.
David and I chatted and decided that as this temp had started within 48 hours of having her portacath flushed that we should follow protocol and take her to hospital...the question was which one!

I phoned the number on the house noticeboard and was a little concerned to find this hospital had closed for the weekend!?! I phoned another number and eventually got through to someoone who said they would arrange for a nurse to phone me back. This she did and told us to take Seraph to the 'Cottage hospital' in Tenby..great we thought, not too far away.
When we got there the Dr was waiting for us....he was very nice and caring but explained that they only had one ward for old people and one dr (him) and were unable to deal with Serph there. However he did examine Seraph and reached the conclusion that we had dreaded...Seraphina was quite likely suffering from early Septacaemia. He arranged for us to be transferred to another hospital more able to deal with her and phoned on ahead. This hospital was an hour away from Tenby (good old Sat nav!)

To cut a long story short the other hospital cannulated Seraphina and took bloods which backed up the theory that Seraphina did in fact have early Septacaemia. She was started on some very heavy duty antibiotics straight away.
All this time David and the children were sitting in the car waiting and when I told him that they were keeping her in everyones heart fell.
Then we spoke to a lovely Consultant who was very sympathetic to our plight and after staying in the hopsital all day he let us take Seraph home overnight on 'home leave' as long as we were back in thew hospital first thing in the morning. We also promised that if anything changed that we would bring her back asap.

It was good to be back in a home environment but not much sleeping was done as Seraphs temp remained high..climbing to 40 degrees at one point.
The folowing day wasnt much better but..she hadnt got any worse either.by Tuesday more results were back and they showed that she also had a urine infection and a stoma infection as well she had also developed a chesty cough.
Each day we had to drive to the hospital for early morning and stay there until her antibioics had slowly run through and she had been reviewed again by the drs.
On Wednesday she was improved, her temperature was normal but she was still not herself by any means. The hospital swapped her to 'oral'antibiotics so that we didnt have to keep going back and forth to the hospital.we tried to go to the Chocolate factory on Wednesday but after a couple of hours Seraph was feeling so poorly that we had to come home.Wednesday night she started with gut problems due to the antibiotics. Thursday we went on the beach very briefly in the morning but Seraph was still suffering so sadly we made the decision to come home that day.

Everyone was disappointed, the children especailly as the holday was something we had looked forward to so much.
On Wednesday I have to admit to being generally angry...not at anyone inparticular but at the unfairness of it all...or so it seemed.
I went up to the bedroom in the house and prayed 'Lord renew a right spirit within me, remove the anger and the bitterness of what has happened' I had explained carefully that we didnt know that Seraph would be ill ,it wasnt her fault etc etc but inside I felt as disappointed as the children.

Then God showed me all the positives...Seraph had been well looked after and made well by the prompt action of the Dr's. we were all still together.
and admittedly snatched but all important moments we had shared together. When driving to the hospital we were playing 'Saviour he can move the mountains,He is mighty to save..' just as we drove through some huge hills/mountains. Awesome...Our God can move things as huge and majestic as these...He created them...WOW!!!!

Then...driving once again we went past a lovely quiet stream where sheep and lambs were freely grazing and lying down by the waters edge...it ws idyllic...'He leads me beside still waters' our own personal illustration of psalm 23!

In the morning before we left we went to the beach and I carried Seraphina to the waters edge, rolled her sleeve up and on the count of 1...2....3...SEASIDE! I crouched down while Aimee dipped Seraph's hand into the cold sea water much to Seraphs amusement...she giggled and giggled,jigging around in my arms as I held her :-)

on our way back we stoppped in a vineyard for a quick look...it was truly wonderful and as we walked throough the vines we chatted about all the places in the Bible that the illustration of a vineyard is used..looked atthe way the vines twisted themselves around their support and grew higher and higher...saw the baby grapes growing. David and I also tasted honeyed mead..something which bought the Francine Rivers book I had been readingto life....it was set in Biblical times and spoke of the Romans drinking honeyed mead.

there were other moments too...small minutes of family, closeness and reminders of Gods presence through it all.No, we didnt have the family holiday that we were longing for but 'God works ALL things for the good of those who love HIM' out of trials and saddness God is still at work creating moments of beauty and memories to treasure..its just up to us to look for them.
Thank you God for the precious little things

Till we meet again,love you forever.

2011-07-06T06:38:00.000-07:00

I read a book....

2011-07-05T01:16:00.000-07:00

I had drafted out a few blog posts...but this morning I knew I needed to write about something else today.
I read a book yesterday...well in truth I started it yesterday afternoon and then awoke at 4am and carried on reading. I have almose finished but It has touched me SO much I had to share it.

The book is called 'Heaven is for real'
I've read a few books on Heaven, its something which interests me not just because of my Christian Faith but because of my own personal experience.
I know I am taking a risk typing this up, its something I have only ever shared in part with a couple of people before...but you know, I have said I will always speak the truth in my blog...from the heart.

I was born into a non-Christian family,Im sure my parents believed in God but it wasnt something that was spoken about.I had an older sister..Catherine she was called.She had long dark hair and huge soulful eyes and was as fragile as a little bird. She couldnt run,she couldnt play ball.Why? because she had a very serious heart condition. It hadnt really been seen before and to be honest it was a wonder she had survived so long.But she needed a big surgery which would take place when she was 6 (I was 4 at the time). The surgery was to take place at a hospital which had a rell renowned surgeon working there at the time..the hospital was called Harefield.
I remember vividly the night before Cattherine was to leave for the hospital. I can still see her eyes earnestly loking into mine as she told me as a little 4 year old that she was going away. She said that she wouldnt be coming back and told me to look after Mummy and Daddy for her.

she knew she was going to die.

But...she also told me where she was going... 'Im going to be with Jesus Caro' she told me ' but I will see you again in a little while' Then she laughed and stuffed her foot in my face saying 'smell my stinky feet' and the serious part of the conversation was over.

When she didnt come back I felt desolate. The operation had been successful but...it was too much for her little body to stand and so she never regained consciousness.
I remember it was the Summer of 1976...we had both had pushchairs and I placed them side by side in the long stretch of scorched lawn and pushed first mine forwards a little and then my sisters a little trying to somehow will her back by my side. I rememer the aching, the confusion, the loneliness.

And then something happened..

A bright light, I looked up and immediately fell on my knees as the sky seemed to open and for a few moments I glimpsed what I knew even as an 'un-Churched 4 year old' be Heaven.

I believe God reached out to me in my sorrow then and showed me it 'was ok' and that Catherine was safe and happy and in the most beautiful place I could ever imagine.
In dark moments after then I would wish with all my heart I could die too to be with her but somehow I got through these times (I believe God held my hand through them) and that vision was something that I held onto as i was growing up until finally at University I gave my life to the Lord.

And now I find myself to some extent in my Mothers shoes..with a seriously ill child who is 'life limited'. In this journey with her and my Faith which after a bit of a blip is now stronger than ever.When my little girl leaves this place Idont just believe...I KNOW where she will be going,I know she will be safe and loved and will wait for me,I know her brother is alreadt there waiting there to meet her.

I walked into the Christian Bookshop..looking for a completely different book and suddenly this particular one seemed to jump off the shelf at me.I bought it actually thinking of a dear friend who had lost a daughter,knowing in my heart that God wanted her to read it and that it would offer some comfort. When i began reading it I just couldnt put it down...some of the things this little nearly 4 year old talks about are EXACTLY the same as what I saw in my vision. He doesnt mention specifically the beautiful rolling fields, the trees but he mentions the colours, the vibrancy and the rainbow coloured horse.

I realise that its a Christian book but...even if you dont believe...give it a try..read it with the simple innocence of a child and guarantee you will be touched by it too.

Letter to my littlest

2011-06-24T09:56:00.000-07:00

Dear Seraphina,

Im sitting here watching you sleeping, you kept me awake again last night...even after you had finally dozed off to sleep...you know why? You were giggling in your sleep..again :)

Watching you sleep, you look so peaceful, so pretty with your mop of untameable curls and your pretty little nose I love doing nose kisses with. Your beautiful little mouth with that enviable perfect cupids bow...God made you so perfect.I love you so so much.

Today I just want to thank you, I feel so blessed having you for my daughter. You have so much going on, so much you have to put up with and yet you are so happy, so smiley...so giggly.

Thank you for letting me come on this journey of your life with you.

Thank you for the honour of being your voice.

Thank you for being patient with me when I get things wrong or dont understand what you need straight away....I know how frustrated you must feel

Thank you for the way you look into my eyes and tell me you love me without saying a word....you bless me

Thank you for showing me how to take pleasure in the simple things,for slowing me down.

Thank you for inspiring me to write stories again, blog and paint and keep piggys.

Thank you for giving me a reason to keep going, a new perspective.

Thank you for the funny way you grab my finger to use it as a pointing tool on your ipad.

Thank you for the utter joy of seeing you laugh the other day on the donkey, for seeing the excitement on your face when you held a baby duck...

Thank you for trusting me to take you on a bouncy castle...and reminding me what fun it is.

Thank you because no matter how much hard work it is at times to look after you I get it beck ten or twentyfold in the every day beautiful things you do and the important lessons you teach me.

I dont know if you will ever be able to read this but nevertheless I hope you feel my love for you and know how much of a blessing you are not only to me but to your brothers and sisters too.

I love you to the moon and back and somewhere over the rainbow

forever and always my precious girl

Mummy x

You just do

2011-06-22T05:05:00.000-07:00

THIS POST IS DEDICATED TO THE MANY FABULOUS PARENTS OF SPECIAL NEEDS CHILDREN OUT THERE.I RESPECT WHAT YOU ALL DO SO VERY MUCH.

Once again today I have been asked the question 'How do you cope?'

When I'm asked this question I usually just smile,slightly embarassed and lost for words and them quickly move the topic of converataion to something else.
Occasionally I have been daring enough to say 'you just do and add that the person asking the question would do just the same' but most of the time I say nothing.

Once,just once recently the truth slipped out and I was met by a horrified and very disapproving look

So here, as much for my own benefit as to answer the many people over the years who have asked this question is the answer '' BECAUSE I DONT HAVE A CHOICE''

This isnt meant to sound cold or resentful,self-pitying or any of the many things that I am sure have crept into the minds of some people. It is simply the truth.They are my children who bless me daily and this is the' hand we've been dealt' for want of a better way of putting it.
There are many many wonderful special needs parents who I am sure will understand and relate to exactly that. We do what we do. We find our own coping mechanisms.

In more detail...Its hard. The repeated hospital trips are isolating. My coping mechanism has been the same each time.
I shut down. Simply that. I have the ability to take my beautiful precious fantastic little girl and place her on the hard cold table of the theatre, reassure her when she cries panic stricken as they anaesthatise her. Tell her over and over quite calmly that I love her and turn to walk away.I have mastered the art of smiling and making small talk to the anaesthetic doctors and nurses as she struggles in my arms even to look as they bend over my little one who suddenly looks oh so small on that big bed and place her dummy and iggle piggle blanket beside her before walking away.
Am I hard? Am I un-natural?...maybe, I dont know,I hope not.I think I am just well trained.
When every fibre of my being whats to turn,pick her up and run with her holding her tightly in my arms I dont...I walk away....and most of all I NEVER let myself cry.

If I feel tears rebelliously pricking at my eyes in these situations I have learnt to dig my nails hard into the palms of my hands to stop them, or bite my lip hard until I get to the safety of the parents toilets where I cant silently scream..and breathe...just not cry. In hospital I never cry.

I cope by praying,hoping and when there have been times that hope seems gone I simply hang on even when my faith has been in shreds I have to hold on.

It hurts everyone.When we are in hospital for weeks my children go from saying 'I miss you' and 'when will you come home' to being told to say hello to me and haiving stunted mono-syllabic conversations. I dont have words to comfort them and they...cope.
The last time we were in I had a phonecall from someone who told me how upset my children were without us....being faced with this reality which yes...I already knew was.....well there are just no words.I want to be able to split myself into a number of different pieces to be what each of my children needs at that time but its not possible. My children 'the left behind' ones are so brave but I really do wish they didnt have to be.
I screamed at God for the unfairness of it all and yes I did the why me? why us? but the reality is why NOT me?? why NOT us?
David visits when he can but its hard for him with us being so far away...he copes.too well at times and we sit both of us by her bed making small talk and talking about mundane things both carefully skirting round the main issue..the littel girl asleep between us.

We come home and everyone readjusts...mostly but not quite...into the every day routines again.However I am reminded of the fragility of it all when we announce we need to go to sheffield for an appointment and the youngest ones ask if we will be coming home or if they need to go to grannys for dinner.

I wish so I could 'make it all better'..that is after all what mums are supposed to do.But the reality is I can't. The only thing I can do is love them with all my heart, to make as many happy memories with them as I can...all of us together.To give them sweet glimpses of 'normality' as we did with the Donkey Party recently.

And so with another big Op looming the answer is still the same..I cope because I have to..we all have to...I cope because I love them.

Home group,what Seraphina taught me.

2011-06-21T02:49:00.000-07:00

I watched a film last night and in it one of the characters said something whihc really hit home with me
'' You're in a perfect place - surrounded by Grace'' and '' God dwells in me - as me ''

God can use anything and anyone to speak to you.

I 'signed up' for a Bible study group this week..Its something I had wanted to do again for a long time but through my questioning of everything I had put it off.
I posted a comment on facebook about wanting to join one and had a lot of lovely offers..but I didnt act on them.I didnt know where to go so I thought I would let God decide.

God decided, and arranged it all...then I got scared.I found out that the home group contained a lot of what I term 'Big Christians' one in particular that I have always always felt completely inferior to.
Well I have been sweating about this first meeting since Sunday, ridiculous I know but I have.

Then it hit me, I love my children all equally they are all absolutely adorable.They all have different personalities strengths and weaknesses. I love Seraphina just the same as the others.

God feels the same way about us. Gods love for us has nothing to do with our accomplishments.I could complare Seraphina to the other children...She cant walk, she cant talk, she cant braid her hair or make things for me and Yet my love for her is no different...she is utterly precious and she gives me gifts every day...
...the gifts she gives me is when she looks me in the eye and smiles or when she is tired and she puts her arms out to me when she is tired and wants to be picked up and carried.Im her parent thats what Im here for, I love her.
I know God feels the same way about me.he loves it when I 'look hinm in the eye' and when I am tired and reach out for him to carry me for a while.

Ive known this in my head for years but knowing it in your heart is another matter entirely.

God is not interested in a performance of a perfect woman who glides through life as if suspended several inches off the floor.
God dwells in me....as ME with all its faults and inconsistancy.
As for Bible study group...yes I am still nervous.But I know I am in a perfect place...surrounded by Grace.
as a friend gently reminded me ''we are all the same to the one who matters''

A whole month!

2011-06-18T07:10:00.000-07:00

Thought I would post a little update as I have been asked by a couple of people as to our current situation.
Well we have been out of hospital a WHOLE MONTH now! :-)
Cant tell you how much we appreciate this as the monthly stays were getting a bit much.
In that time yes, we have struggled. Seraphinas gut is becoming increasingly difficult to manage.Having said that the rectal tube we have has proved to be really valuable.We have had to use it twice in the last month when she 'blows up' to deflate her intestines.
Its not a nice job, its incredibly messy and I hate doing it purely because of the discomfort and fear it causes her but I have to tell myself that to leave it would mean an ambulance trip and hospital stay which would be even worse for her...so you just grit your teeth and go ahead.

As far as where we are now..well the good news is finally her gut seems to be absorbing her feed again.At times I have not known whether we were conming or going as she has been fed and Ive thought 'great, we're on the up' only for her to 'explode' everywhere and literally dump all her feed. Those who follow me on twitter will have had to put up with some 'Poo everywhere' tweets as I let off steam and so apologies for that. Some days I have had to bath and change her and wheelchair covers 3-4 times and it has from time to time got me down.
As far as her energy levels go she has good days and bad. Pacing things for her is a little tricky and sometimes I get it wrong. She recently had an absolutely fabulous time at a party at the EST Donkey sanctuary in Birmingham. We all did to be fair. It was organised by the Livvyssmile charity and we all went to spend some family time together. Seraphina had her first donkey ride...you know what I dont think I will ever forget the look of pure joy on her face or the giggles when the donkey started to trot :-).I will try and get some pictures posted of it very soon x
The instructors had asked beforehand if I thought she would cope with a trot and I said ...'go ahead and try' which they did...well my little dare devil thought it was the best bit and when the donkey slowed his pace again she was jigging up and down in her seat trying to make him 'go faster' again...very kindly the donkey obliged for another trot .
Even typing this is making me smile and chuckle...its just such a precious memory.
The day wasnt without its drama as Samuel decided to have a fight with the bouncy castle...it won and Sam lost his front teeth (they were wobbly I hasten to add) but you know how much mouths bleed. He was ver brave though and after a it of a cry and cuddle he went on to have a fabulous afternoon aided by the balloon modeller who made him and elephant! The girls had fun doing circus skills and even Joseph was joining in by the end of the afternoon. All in all it was a lovely day to remember and let our hair down after the in and out of hospital recently.

We have had to make a hard decision with Physio recently. We tried to adjust and put Seraphina in her old gait trianer...sadly it didnt work. Seraphina has no strength in her legs any more and even with support she cannot weight bear and scoot along like she used to...well not at all. Physio has decided that its just not fair on her, the gait trianer is just not suitable any more and she clearly wasnt enjoying it. This was somewhere we didnt want to go at all...but something we have to let go, hard but neccessary.

We are back in hospital on Monday, up in Sheffield. We have an orthopaedic review to look at her little legs and also monitor her scolliosis and a meeting with the surgeon to discuss her next operation. This is something I am not looking forward to but something we cant put off. We cant continue to use a rectal tube long term, it just isnt fair on her so the plan is to put a third stoma in her bowel. Sounds simple enough apart fromt he fact that Seraphina does VERY funny things like stopping altogether and going on strike if anyone so much as glances at her bowel let alone thinks of operating on it.

Im guessing the 'letting go' will be tested again, good job God is there to catch me at the same time as holding my darling Seraphina.

'' The Eternal God is your refuge and underneath are the Everlasting arms'' Deut 33:27

Loving and Letting Go

2011-06-13T04:31:00.000-07:00

This post is very personal to me, but I wanted to share this part of the journey to hold myself accountable and so that , if anyone else out there goes through the same thing either now or in the future, that something of what I say may help.
My Children are my world,I love them utterly, completely and nothing they could ever do or say will change that.
I love them so much that the thought of one day losing one of them has been more recently more than I could bear.
Its not yet a year since Seraph had her formal diagnosis of Rett syndrome and in that year I dont feel that as a family we have had tme to draw breath before the next hospital visit or the next piece of bad news or crisis.
It has taken its toll on all of us.
For me it has thrown me more recently into a state of exaustion and..yes I will admit it depression. I am admitting this becuase I am through with being not completely honest.Purely because of distance it has meant that hospital decisions have been mine alone to make, no fault of Davids, he has had more than enough to cope with being a father to our other 5 children and hold down a full time and very demanding job.

My faith is very important to me but even that has been tested. I have looked into putting my trust elsewhere,other means of 'saving' my girl out of total desperation.

Believe me when I say all other means are futile.There is no magic answer. I have been so exeedingly stupid.
Today I have learnt that the only way I can save her and myself is to let her go. Gods care is more far reaching than mine,Gods power and love for her more powerful than mine.
The all consuming fear every time she gets poorly and stops breathing or starts fitting is made worse only because of my lack of trust in HIM who 'Is able to do immeasurably more than we ask or imagine' (Eph 3:20)
Today I have asked for forgiveness. Im not going to say for one instant that 'yay, everything is going to be hunky dory now'.But what I am going to say is that I have made a decision...to Trust God with Seraphina and to Let Go.Something I havent ever before been able to do.
I dont know what the future holds...but I know who holds it.
I believe God knew I would come to this point...because He had already provided someone else apart from Him who understood my fears and who I have spoken to today. They know who they are and I thank God for them.
After I prayed initally...a piece of paper fell out of my Bible.I cant even remember copying it..but i felt it falling out at this moment quite apt.
I'll share it with you
Its called 'When all means fail' and is by someone called David Wilkerson

To believe when all means fail is exceedingly pleasing to God and is most acceptable. Jesus said to Thomas, “You have believed because you have seen, but blessed are those that do believe and have not seen” (John 20:29).

Blessed are those who believe when there is no evidence of an answer to prayer—who trust beyond hope when all means have failed.

Someone has come to the place of hopelessness—the end of hope—the end of all means. A loved one is facing death and doctors give no hope. Death seems inevitable. Hope is gone. The miracle prayed for is not happening.

That is when Satan’s hordes come to attack your mind with fear, anger, overwhelming questions: “Where is your God now? You prayed until you had no tears left. You fasted. You stood on promises. You trusted.”

Blasphemous thoughts will be injected into your mind: “Prayer failed. Faith failed. Don’t quit on God—just do not trust him anymore. It doesn’t pay!”

Even questioning God’s existence will be injected into your mind. These have been the devices of Satan for centuries. Some of the godliest men and women who ever lived were under such demonic attacks.

To those going through the valley and shadow of death, hear this word: Weeping will last through some dark, awful nights—and in that darkness you will soon hear the Father whisper, “I am with you. I cannot tell you why right now, but one day it will all make sense. You will see it was all part of my plan. It was no accident. It was no failure on your part. Hold fast. Let me embrace you in your hour of pain.''

Beloved, God has never failed to act but in goodness and love. When all means fail—his love prevails. Hold fast to your faith. Stand fast in his Word. There is no other hope in this world.

Part of My Baptism Verse..because God knew

'' For I believe that neither death nor life,noreangels nor principalities nor powers,nor things present nor things to come,nor height nor depth nor any other created thing shall be able to separate us from the Love of God which is in Christ Jesus Our Lord'' Romans 8:38-39

Promises

2011-06-12T02:26:00.000-07:00

I promise Seraphina and all my other children every night " Mummy loves you - always" even if they are asleep I whisper it into their ears.It's important to me and I mean it.

Promises are spoken so easily.
"Promise I'll be your best friend" in the playground.
"I can't do it now but we'll do it later,promise"
"I'll see you Saturday,promise"
Promises are such important powerful things and yet sometimes we all to easily promise something without realising the consequences.

Broken promises hurt,fill you with disappointment and can sometimes,depending on how much you have depended on to that promise, cut you to the core.

Childhood can be filled with broken promises and this makes believing stuff including Gods promises, much more difficult even as adults.However God doesn't say anything unless He means it.
God has promised that nothing can ever separate us from the love of God (Rom 8: 38-40) not only that but he has "sealed us and given us his Spirit in our hearts as a guarantee"(2Cor1:22).He really does mean it, He's not saying it lightly.

Its so important that if you say you'll do something - YOU DO IT!

I always try to do this and I dont always get it right, but I am going to try extra hard from now on to be as firm in my promises to others including my gorgeous children as God is to me.

I hope when I say to my children "I promise" and look into their eyes they know that I mean it.

The child who reached for stars

2011-06-10T04:44:00.000-07:00

Once was a a child who reached for stars

convinced that they would come

If she but only knew the words

to summon them

She spent long nights attempting this

trying every spell she knew

to call them down,these bright things

in the morning tears would come

No matter how high she reached

and how she called and called

no star would fall into her arms

no shining light for her

and so into a woman now

the little girl she grew

still yearning for her own bright star

and her Creator knew

He put them there

those shining stars He'd counted one by one

He'd given them their brightness

From his God light clear and true.

He said ,"You don't need my stars

for they're not yours to hold.

Inside you have your own light

Your Spirit strong and bold"

"I put it there, I made it

to shine brightest of all,

but you have left it to grow dim

while waiting for a star to fall."

"Take my hand ,I'll show you

how to once again stand tall.

To make your light shine brighter,

to make its beauty shine for all."

She saw the years she'd wasted

after speaking long hours with Him

She no longer needed the beauty of stars

true beauty and light comes from within.

Livvys Smile

2011-05-31T04:50:00.000-07:00

Let me take you back just over 12 months ago....I was in hospital with Seraph. We had been in a couple of months and Seraph was about as sick as a child can get. I had spent Christmas and New Year in Intensive care with her, had kissed her as the bells struck midnight not knowing if I would ever see her open her beautiful eyes again.My family was miles away and I missed them and also had no support...it was a lonely worrying time.
I communicated with the outside world via text and mobile internet (where would we be without our phones!!) but all the same it was pretty lonely.

So imagine this.....one of the nurses comes over with a very box which had just been delivered for Seraphina and I. Inside was a HUGE Tatty Teddy shaped helium balloon for Seraphina and a box of chocolates for me!. Anyone who has ever been in hospital will know that chocoalte is a MUST to get through each day when you have a sick child...to say I appreciated it was an understatement.Seraphina adored the balloon..to start with she just looked at it but when she was stronger I would pull it down towards her and she would bash it with her little fists, laugh and get generally very excited. It helped to make her smile again after she had had so many nasty blood tests etc while in hospital.
The card said with love from Livvyssmile. I didnt know who this was but I was SO grateful that someone had thought of us. The card also had a picture of the most adorable little girl on it, I presumed this was Livvy...so however sent this was a Mom, like me...it was nice to feel that connection with someone and gave both of us a boost during this horrible time.

Months later I was to learn more about Livvyssmile . It is a charity that was set up in honour of the daughter of a couple called Sara and Alan. Olivia (or Livvy) passed away at the age of nine.She had suffered with Rett Syndrome a horrible neurological condition which eventually as you know Seraph was diagnosed with also.
These wonderful people set up this charity solely to continue the legacy of love and laughter Livvy brought to many.Sharing the warmth of their daughter by creating smiles for special needs children and their families.

They run various lovely events throughout the year Fun days at a donkey sanctuary, karaoke parties even RC racing events.
Thier website is http://www.livvyssmile.co.uk/ please go and check it out and support this wonderful caring charity.....you'll be so glad you did.

Biting the Bullet...

2011-05-23T05:01:00.000-07:00

Im writing this post not even knowing whether it will make any coherent sense or indeed if I will even publish it.More from a need to write things down...to let them come tumbling out randomly so that I can see them.

Im set out on a journey to find who I was a while back, as I mentioned in a previous post Iseem to have misplaced 'me'somewhere.
Well Im finding more and more the need or desire to do things I used to do years ago...writing, throwing pots on a potters wheel,taking photographs like I used to do and developing them,Painiting huge canvases with oils, singing and playing the flute.
I have never really realised how much being creative was a part of me and equally how much I had stifled it with the demands of being a parent.My life has been so wholely consumed with being a mother and caring for my children that I havent 'cared' for myself at all.
I feel so very selfish saying this and...yes...I admit it....guilt ridden. I dont know if I dare post this as I know many wonderful inspiring parents of children both special needs and not who seem to cope fine without doing this. But for me....its not enough

Please dont get me wrong, I LOVE my children and they have taught and still teach me lots every day but....
I sat down and realised that if I died tomorrow....I haven't left a mark,nothing would be left behind.
....and I want to make a difference.

I have always told others that God has a plan for their lives, something that only they can do, a destiny to fulfill and that I DO believe....for others.Its much harder believing it for myself.
When a few years ago I asked someone in the Church what Gods plan was for my life they said I was already doing it...being a Mum.
But I feel incredibly restless...and I think now that if i was fulfilling totally what God had planned for me then I wouldnt feel this way..wouldnt have the ''There must be more than this...'' line going round in my head.

For me now something is missing...I want so much for God to use me,in some small way to bring hope to someone elses life, I want to make a difference.I dont know how and I fear being judged for wanting that on top of my family but I cant help it.God made me to be a mother but I believe he made me to be ME too with all my dozens of faults and lack of confidence.The only skill I have is a willing heart..I pray that God can use that.

Well thats how I feel .....will I bite the bullet and post it??

Home again and the ' 'T ' word.

2011-05-18T06:37:00.000-07:00

Once again we ae home after a spell in hospital.As usual Seraphina seems to have picked up a bug so as I type she is currently napping and has a high temp and runny nose, poor kid never seems to get a break.

We seem to be going through a phase of being in hospital monthly and this last stay with abdominal distention was pretty nasty for her although we know at least whats causing it. Seraphina has been diagnosed with Chronic intestinal pseudo-obstruction which basically means that her gut nerves are giving out the wrong signals and her bowel swells and gives all the pain and discomfort of an obstruction when there is none there.
We have come home with yet more medicine and a rectal tube to use when she blows up with gas which should releave the presure and means we can 'manage' her at home for longer unless she needs IV fluids.
Long term she needs a third stoma - in her bowel- to relieve pressure that way...not something I am looking forward to becasue bowel surgery for Seraphina is always a major deal as her gut DOES NOT like being touched and does all manner of scary things when it is messed with.

Me? well Im exausted,totally and utterly,mentally and physically.
I have reached the end of my strength time and time again and felt that I just could not continue,have felt broken but i have carried on. My faith has been tested to the point where I have felt like I am hanging on by a thread.....but am I ? or is God hainging on to me keeping my head above water and providing the means to carry on this journey....and what a journey its been so far....!!!
Over the last few months particularly I have felt like giving up. I have felt the whole 'why Seraphina and why me?' thing in the past.If I am honest I still do from time to time but in Church recently the person preaching was talking about forgiveness.At the time I was having an 'angry and God day' and the preacher said ''you cannot forgive until you see the bigger picture''. Well, this got me thinking....I was angry at God for inflicting my girl with rett syndrome BUT in this case I cannot see the bigger picture - not in this life anyway so I have to look at God in order to forgive.

In the New Testament we see a picture of God through his Son Jesus.Someone who feels what we feel,is human and yet without sin,full of compassion and kindness.We also know that His wisdom is beyond all understanding.With that knowledge of Gods personality I cannot believe he would do something cruel so.....I need to TRUST that when I do see the bigger picture I will understand why. The 'T' word.
Trusting anyone is something I struggle with a LOT...trusting God? I am being put into situations again and again which require this...Im working on it :)

The great debate...

2011-05-04T08:52:00.000-07:00

I have become so stressed about making this decision that I have decided to use the motto 'If in doubt,blog it out' to get my thoughts organised in some (hopefully) coherent fashion.

Before I continue I need to tell you that my experience with 'professionals' involved with Seraphina so far has been distinctly disappointing.We have had to fight for every little thing involved in her care,trying to get a chair other than her wheelchair to sit in has been a long drawn out affair spanning 18 months or more (still havent got one)Speech and languge therapy has been almost non-existant ..I have been waiting for 5 months + for a list of 'first words' to try and teach her!!, Dentist...2 years and still waiting.
When she began to lose skills at 18 months I had every answer from 'paranoid mother' 'you arent stimulating her enough' and ' shes probably working on other skills, give her time'...........cant you see where I am heading here and why I have such a mistrust of the breed in general??

Well now I have to make a decision, one I am agonising over as I so desperately want to make the right one for Seraphina and me.

School.

We started the assessment/statementing process once before,just over 12 months ago for nursery but it was halted on the advice of the Disability service as she had been so poorly and had changed so mcuh from the initial assessments that it was pointless and she wasnt up to nursery.

So the process has now been started again and we have to have all the assessments done again.
In our area there is a choice of 2 SN schools.One of them wouldnt have Seraphina anyway I have been told as they cater for more able bodied children mainly Autistic spectrum and then we have the other one which is closer but has no PMLD class (profound and multiple learning disability..what Seraph is classed as).It would be the latter I would have to send Seraphina to.

I know, and this much I am clear on, that I could not send her to school full time. I am told she would not get one to one and therefore she would be in a class of up to 12 children.
The IDS lady said she in favour of a SN school ,that they have much more equipment for special needs children...but if she has no one to one to help her access it then its pointless in my opinion. The schools last OFSTED said that they found it was very easy for PMLD children to be ignored...hmmmm :-S

I have considered Flexi-schooling, which is as follows....she would spend part of each day at an SN school and the rest of the time being home-schooled (I trained to be a Teacher anyway)

The alternative to that is to completely home school. From a completely selfish point of view it would be nice to 'have a break' (we have no respite as I didnt want to send her to a hospice and from a carer point of view...not that we have ever beeen offered one...I would want someone who I trusted and who had prior knowledge of Rett Syndrome and with similar life values as my own..tall order I know lol).

I need to know that wherever she is educated she is loved and safe and stimulated at her own pace...and Im not convinved she would have that in full time school.
However on the flip-side, if I am honest,I dont know if I have the stamina to home school full time.Right now I feel rather burnt out with all the bad nights for example today I have been up since 3am..I hope that doesnt sound selfish? I just think that maybe having so little sleep then doing a days 'schooling' with Seraphina, keeping house and looking after another 5 children may be too much??? I dont know, maybe I am just wimping out.
At the moment we are doing roughly a half day school every day..at her pace and for which I am keeping extensive records of her progress.I am doing this all ad hoc as we have no input from anyone as to what to teach so we use the touchscreen and ipad working on recognising letters and numbers, matching,songs, messy play..that kinda thing.

What stuff should she be learning and what would she be expected to learn at home???

So you see (hopefully) my problem...I dont want to feel like I have let her down or failed her in any way but at the same time I have this image of her in a classroom with everone bustling around around her and her just sitting there on her own, not knowing whats going on, unable to tell anyone...the thought is heartbreaking.

But I need to make a decision soon..well by tomorrow actually as I have people coming out to make their first 'assessments' of her...I just dont know what to do.

All feedback welcome :)

''All Change''

2011-05-03T05:59:00.000-07:00

We live life in the fast lane, a technological age where advances are being made all the time, Xbox, Wii,Playstation 3,ipod, ipad, touchscreens, fast food,'on demand' TV and films and even a shop where you can get loans in advance of your paycheque!
Everything organised and promoted as 'must haves' to aid us in the increasingly fast race known as 'life'

I used to be uber organised,always fitting everything I needed to into one day - hated it if when meeting people they were running even a couple of minutes late.I was one of the twonks who, after pressing the button at the pelican crossing, then dashed out at the soonest break in traffic as the lights took 'too long'.
I have my first 5 children and found that to start with I couldnt get out when I wanted to, they didnt 'fit in' with my life.Oh how I laugh so much when on the baby programmes the newly expectant couples announce 'having a baby wont change us, it will have to fit in with our life'.I wonder if thats still their view 6-12 months post birth??
Over time I became quicker and more organised again and settled happily into a routine.

Then Seraphina arrived....'' All Change!''. This little girl has changed my whole outlook on life.You cant hurry with a big heavy wheelchair,medicines,oxygen and feed pump and...Seraphina doesnt like quick or noisy.

Instead of rushing round like a mad thing Seraphina has taught me to wait. Sitting for hours by hospital beds or in waiting rooms.She has taught me to be still, cradling her in my arms in the wee hours till she finally shuts her eyes.
She has shown me the importance of the simple things,things with her child-like understanding and enthusiasm give her so much pleasure, like butterfies,the patterns the sunlight throws on her bedroom walls, bubbles, the wind in her hair and music.
She notices and loves things I wouldnt have seen.In the garden her eyes found a tiny but brilliant blue patch of gentians, so easily overlooked by anyone else amongst the weeds (yes,my garden needs a makeover! ;))...So I photographed them for her :)
She has taught me so so much, shown me patience I didnt know I had, cultivated in me a love for her that is so strong and given me the gift of seeing things through her eyes,taught me to to value the God given simple things.
God knew and had this covered ! :)

''Im telling you once and for all, that unless you return to square one and start over like little children, you're not going to get a look at the Kingdom, let alone get in.Whoever becomes simple and elemental again like this child will rank high in Gods Kingdom'' Matt 18.2

''All Change'' though not without its saddness and pain, has been in lots of ways one of the best things to happen to me. Thank you Seraphina, for all you have taught and are teaching me still. I love you to the moon and somewhere over the rainbow....always xxx

My girls

2011-05-01T11:53:00.000-07:00

Just wanted to share a couple of pics I took today.The sun was shining and Seraphina was SO pleased to be out int it.

THIS is the reason I go on about Girl Power 2 cure and RSRT, this smile is what keeps me going , making people aware of Rett syndrome and in so doing praying that we will one day have a cure.I want to see my girl run and play with her sisters, I want to hear her talk SO much and say the word I never got to hear her say...Mama

and this gorgeous picture is of my four beautiful girls together.

I LOVE my girls xx

Girl power 2 cure - from a mothers perspective

2011-04-29T13:01:00.000-07:00

This is a blog post which had to be written..oout of grattude and as an aknowledgement of the work of this organisation.

I first came into contact with this organisaion through an inspiring lady called Kelly.
It was 9/9/ last year and I had just blogged my 'results day' post.My world had fallen apart, all my hopes and dreams for my little girl shattered.
She had 'got through' being born at 25 weeks only to be hit by this.We had arrived in a foreign land without a map or guide book.Kelly commented on my post saying ''there are moms out there JUST LIKE YOU ready to help''
I felt like I had been thrown a life line....just like me.....could it be that I wasnt as alone as I feared?

I followed Kelly's link to her blog where I read about her adorable little girl called Brooklyn, who also has Rett syndrome (and Boston her little boy..sorry couldnt go without mentining this uber cute little guy..love ya sweetie xx) and subsequently the organisation Girlpower2cure.

These wonderful people raise awareness of rett syndrome through fundraisers andthe 'purple card' which they personalise for you to hand out to people.
They support other rett families through their website Rett girl.org which is a mine of useful day to day information, eye gaze pages and the more recent 'Rett we can channel on YOU TUBE shoing the amazing potential of our Rett girls - take a look.I promise you,you will be amazed...our girls ARE in there!!!
They also produced a Girl Power CD.Songs especially for girls,which my daughter is addicted to and which inspired the murals you see in this post.
More importantly they raise money for RSRT (Rett Syndrome Research Trust)...our hope for a cure comes from the many research projects funded by this organisation.

Since then I have been in touch with other organisations and recieved support from the lovely Julie at Rett UK and also been in contact with RSRT directly but GirlPower2cure is very dear to my heart..because it is run by people just like me, mums struggling with the day to day living in 'rettland' showing and inspiring us to rise above this devastating condition and never give up.The ethos of Girl Power and Girls helping girls fight Rett syndrome is awe inpiring.

So this post is a 'thankyou' not only for the work you do but also for throwing me the lifeline that I badly needed then.I hope my blog followers will check out this great site http://www.girlpower2cure.org/

Thank you Guys - you ROCK!

Following your dreams...

2011-04-29T03:23:00.000-07:00

I thought about maybe doing another blog for this post but then , its all part of being in'Seraphinas world' and so it seems to fit somehow...
I have been struggling with one thing on and off for a while now,I ponder on how my life has turned out so far.It was my husband and my wedding anniversary recently,14 years together.I flippantly said 'hunny if we had known 14 years ago everything that has happened to us so far...would you have still married me?.Of course he said yes, he knew his life wouldnt be worth living if he said no lol! but seriously, Eastenders has nothing on our life!

But, this got me thinking, how strange it is that I did a degree in Art, and ended up only using it to paint my daughters bedroom walls.I studied literature..and all I write is my daughters bedtime stories, I studied music and now I play the theme from 'Dora the explorer',I trained to be a teacher and studied special needs...and now I have three special needs children and plan on homeschooling the sickest one.
How life changes.....

Now dont get me wrong,I dont resent or regret my family and I rejoice in Gods provision, trainning me up for the job I have now.My family is my life,so so precious..BUT, who am I now?

Lots of who I am I have forgotten, or mislaid along the way to being a wife and then a mother.My dreams vanished like dew on a summer morning. However hidden away in the farthest corner of my mind again are my dreams,put on hold. I had forgotten lots of them until recently through painting and peoples reactions they reappeared as they ever were.Which makes me wonder do we follow our dreams or, when thats not possible do they follow us only to reappear before us when the time is right?

I have decided tentatively to 'get out there' and discover who I am again,I dont know how long it will take, what I will find along the way but I have to do it,this one thing, for me.
At the risk of making any reader groan, this reminds me of the lyrics of a song...cheesy but good lyrics

I can almost see it

That dream I am dreaming

But there's a voice inside my head saying

"You'll never reach it"

Every step I'm taking

Every move I make feels

Lost with no direction

My faith is shaking

But I gotta keep trying

Gotta keep my head held high

There's always gonna be another mountain

I'm always gonna wanna make it move

Always gonna be a uphill battle

Sometimes I'm gonna have to lose

Ain't about how fast I get there

Ain't about what's waiting on the other side

It's the climb

MILEY CYRUS - THE CLIMB LYRICS

unashamed boast!

2011-04-28T12:45:00.000-07:00

not very good quality but still a lovely pic of Seraphina, my sweet 4 year old x

So where do we go from here?

2011-04-28T10:45:00.000-07:00

So much has happened since my last post. We had a lovely Christmas all at home together something I treasured and wanted so much after the previous Christmas. Seraphina was well for it and enjoyed the unwrapping whilst being able to hide in the safety of her room when all the hustle and bustle bacame too much for her.
February 1st bought her surgery date. she had had botox in her legs but alas this time it had no effect and the serial casting just left her with grade 3 pressure sores after 48 hours in plaster.So this time they did tendon and muscle release surgery and she was in plaster casts for 6 weeks. The results we have from this are great. She has AFO's on day and night but her feet are in a nice 90 degrees now instead of the pointy-toed ballerina she was before.
March wasnt so good. we spent most if not all of it in and out of hospital.
Recent episode

sudden bloating of stomach, tried to aspirate gastrostomy and nothing came out.in a LOT of pain,pale and clammy,then started retching when I started pump feed and every time she retched green bile came out into gastrostomy bag. she then started fitting.
I called ambulance and went to hospital.they diagnosed a bowel obstruction as xray showed massively dilated loops of bowel. got transferred to childrens hospital (by this time she had been off feed for a while) tummy was slightly softer. 2nd xray still showed dilated loops of bowel but NO obstruction(meanwhile she had started to pass wind again). She was put on IVI maintenance and taken to theatre to put in portacath as her veins are very bad. when she came back from theatre she started coughing, was diagnosed with a pneumonia on left side 48 hrs later along with an ecoli urine infection. We tried again and again to
built up feeds slowly as she kept bloating out and then going down again though not so bad as before. once we got her on around 40mls an hour we were discharged to build up feed at home.

5 days later sudden extreme pain,bloating etc just like before.phoned surgeon who said he didnt know really what was going on could be another volvulous twisting and untwisting or chronic intestinal pseudo-obstruction down to a 'rett thing' and as long as she was hydrated and weeing then carry on. By this time she also had chronic diahorrea. Then we spent several hours off feed,then 15mls an hour dioralyte with me syringing in more every hour, still getting green bile in gastrostomy.then onto 9% feed which she hated and seemed to cause her pain so been on codiene.Even her normal meds seem to cause her pain for some reason.have stopped and started feds several times.

she was re-admitted and once again put on an IVI but was on a ward with other children and managed to pick up rotavirus (due I think to the fact she was so run down by this point). No tests were carried out/ no bloods or anything as it was no longfer deemed neccessary so after a frank discussion with our surgeon where he basically said he didnt know what to do we left the hospital and went home to try and build up feeds there.I asked for a disk with her xrays on in case anyone else had an idea what was going on. They have booked us no follow up.

We had real trouble trying to get her feed up..she kept bloating out (not as distended as before but pretty uncomfortable looking), mucousy poop, tummy pain and still this rash on her bottom, back and hips as soon as we introduced her milk feed again.

I phoned the dietician out of desperation and said that I thought somehow she had developed a kind of gut intollerance to her feed or something as it was causing so many symptoms. Thankfully she said that she had heard about this kind of thing only once before with another Rett girl (was nice to talk to someone who didnt think I was a complete nut case! ). She didnt know much about immune response but admitted that it sounded likely particularly with her response to antihistamine.The other case she had heard out turned out to be an inability to metabolise/cope with too much carbohydrate and so she switched her to a different feed.

So, she agreed (as Seraphinas weight had now fallen from 23kilos to 18.5kilos) to trial Seraphina on this feed and the rest, as they say, is history...we switched from Neocate Advance to something called Elemental 028 extra and she is tolerating full strength feed and running via her feed pump on 85mls/hr over 18 hours..within around 48 hours the rash she had had completely gone, we have only 40mls aspirate in 24 hrs, which for Seraphina is pretty amazing!, we have no bloating, no mucousy stools, no blood, no need for painkillers and shes even starting to get the colour back in her cheeks :)

The other change we have had is the introduction of a drug called Benzehexol. Its a drug primarily used to treat parkinsonism. It was given to Sraph to try and prevent the dystonic spasms she had but the other effects have been quite miraculous...she no longer has much in the way of tremor, she can now point with her index finger and this has enabled her to access an Ipad. We now know that she can do simple jigsaws by touching the piece and then touching wher it should go...and the piece jumps into place,something she couldnt do with a normal jigsaw because she hasnt the hand skills.
The ipad has been wonderful for both of us as it not only relieved some of the frustration and 'locked in' problems she has as a girl with Rett but also gave us a glimpse of the enormous potential she has. we use it on a daily basis along with her touchscreen computer with the added advantage that it can go anywhere with her,something we have found invaluable.

April has been very up and down.although feeding is going well she seems to pick up bugs very very easily. At this moment she has another stoma infection and a UTI as well as a bit of a tummy bug. Im hoping that as she recovers from last month and puts a bit of weight back on , that she will pick up a bit.
Yesterday we saw the Neurologist. Seraphina has been having some very scary episodes where she will seemingly choke and then stop breathing, she goes very very blue when this happens and you cant predict when it will happen. The neurologist seemed to think that this will become more frequent..most likely Rett related due to autonomic disfunction but there is also the possibility that there is an element of epileptic activity in this and the extremely unsettled/teeth grinding episodes she is also suffering with. His advice for now was to see how it went and use Midazolam when this happens to see if it helps.

The other topic of conversation was further genetic testing for us and Seraphina as she may also have an underlying progressive degenerative disorder, we discussed it and decided that we would rather not know. A tough one but knowing wouldnt change or alter her treatment in any way, she is already classed as life-limited so as far as we were concerned there was no need to know.

So here we are, where we go from here who knows....

Song for Seraphina

2010-11-11T12:26:00.000-08:00

If Love had wings, I'd fly you to the heavens
To play among the stars
and dance along the Rainbows.
If Love had wings Id take you to tomorrow,
You'd run and laugh and play
and I would hear you speak my name
If love had wings...

This is the Chorus of the song I am writing at the moment.My dream is to be able to record it and the proceeds go to Rett Syndrome research. The lyrics speak of my love for my girl and my longing for a cure but equally echo I am sure, the feelings of lots parents of Rett angels past and present.

So if anyone reading this would like to either help sing it with me,have a recording studio which they wouldnt mind sharing or would like to help make this dream come true...??

Its November...

2010-11-11T11:28:00.000-08:00

Well its somehow managed to be a month since my last update,not sure how that happened..but then things have been quite busy. October wasnt the best month for Seraphina,Seraphina had 3 visits to hospital,two of which were seizure related because of underlying infection..the first being a urine infection which led into a chest infection as she aspirated whilst fitting and the second being a virus and chest infection.
Seraphina is also taking part in a trial to test a device for dealing with lots of aerophagia in Rett syndrome....a dry seal chest drain attached to her gastrostomy!...well the benefits are two-fold....she has reflux despite 3 fundoplications and so her gastrostomy needs to be on 'free drainage'all the time so that she has nothing to reflux...che chest drain collects this but also, it has a valve in so the air she swallows goes into the chest drain and is released via the valve on the top,so no more bile bag emptying :-)
Of course our local PCT had to throw their toys out of the pram about it because the chest drain wanst in her chest...but hey ho Im not really surprised,in the end it all comes down to money.

Some lovely news is that the Acorns lady and the lady from Scope managed to secure us a weekend away in the half term :)...it was SOOO needed as we hadnt been able to go on holiday and everyone was a bit frazzled.Was so nice to see the children enjoying themselves and having some 'normality'

Cue picure of Eve 'wearing a candyfloss moustache and beard courtesy of Butlins and a pooped Seraphina in the background lol :)
We also went to a farm where Seraphina fell in love with the Ponies and Donkeys and kept putting her hand out for them to lick :).I also took her on a bouncy castle...expecting her to be a bit overwhelmed when the others got on and started bouncing her....on the contrary the little daredevil started giggling and LOVED it !

We also got to see Orthopaedics finally after a 12 month wait...we couldnt get seen again locally as they were booked into the new year so we gave up and our surgeon in Sheffield referred there...we got seen in 4 weeks!!! (and they wonder why we dont move all services locally!).Well the pain in her hip I have been harping on about for months seems to be due to the fact that her left hip is slightly dislocated!...poor hunny and her tendons in the backs of her heels/calf are SOOO tight he has booked her for surgery on 30th November and serial casting too so she will have the plasters replaced every two weeks.

I have mixed feelings about this...I hate November SO much ater last year and the fact that she has to have surgery around the same time that she got so very very poorly last year chills me to the bone.I know its probably totally paranoid and no amount of worrying will change anything but I just cant help it..whenever I think about it its like an ice cold hand grabs my throat and chokes me.
As it is I feel like I am living this winter on a knife edge...every sniffle and I am watching her determined to do better this year at protecting her so that we dont have a repeat performance of last year.
The picture still floats in my mind of New Year and kissing my little sweetheart as she lay zoned out on Morphine and ketamine,wishing her happy new year and not knowing if I would ever see her open her eyes again. Even typing this makes my eyes prick with tears.

But she'll be fine,she has to be. I read the blog last night of a lovely lovely Christian lady...one whom i have never met but who gives me so much in the way of encouragement and comfort that I am not alone in my journey or feelings. She lost her absolutely beautiful little girl so Rett syndrome.I read her blog again last night in the early hours when my own little madam was being a night owl once again.Her post was so honest,her love for her daughter so tangible that I was reduced to tears reading it. I honestly dont think i could be as brave if i lost Seraphina...I know this will sound really quite bad as I have another 5 beautiful children who need me...but I honestly think that I would break in two forever if she passed away,I dont think I would be able to carry on,I love my girl with every single fibre of my being,more powerfully than I ever thought possible, I would walk over hot coals for her, I just dont think I could bear it.

On a more positive note ... the refund finally came back from Recare! and Promise dreams funded a wonderful touch screen computer for Seraphina and also some software from America made by Laureate learning.Its amazing!!! Seraphina knew what to do straight away, she grabbed my hand to help her touch the screen bless her but she finally has a way to try and communicate to us what she knows :)
I will post some pics and a video when I have downloaded them but just wanted to share the good news straight away :)

A funny pic to end this post with....little Seraphina technobod watching her brother on Club Penguin,well she doesnt want to miss anything lol!!

Blog stats..WOW

2010-10-01T07:11:00.000-07:00

United Kingdom 537

United States 154
Germany 40
Luxembourg 25
Russia 16
Australia 14
France 10
Netherlands 10
Belgium 8
Canada 8

Have just discovered this part of the blog,where it records the number of people who read your blog in a week/month etc
This was last weeks figures...astounded isnt the word! my wonderful special girl is touching so many peoples hearts and hopefully making many people aware of the cruel disease that Rett syndrome is.
For those that follow my girls blog I humbly thank you and pray that you will pass on your new found awareness to others as well as visit my links to Reverse rett and Rett uk two wonderful chairties whose aim is to put and end to all the suffering of Seraphina and other 'silent angels' like her around the world.

and to end...another beautiful picture of my little angel taken today

Seraphinas dream wish....saga

2010-09-30T05:50:00.000-07:00

Seraphina has never had a wish granted by a charity,so when our old keyworker suggested it some months back we jumped at the chance.As we hadnt got a WAV (for those of you who dont know what one of these is it stands for Wheelchair Accessable Vehicle) and so there was no way we could go out together as a family,the keyworker suggested a foldable buggy for use on daytrips and to enable us to go on holiday.

The paperwork was filled in by the keyworker and she chose a buggy for us saying that she knew a famil who had just had one of these buggys and she would bring it out to show us and try Seraphina in it.

The months drifted by and so did our chance of a summer holiday together, I had more or less given up on our application being successful. Then out of the blue a phonecall saying that Seraphinas pushchair had been approved and it would be delivered the next week! Wonderful I thought :)

When the pushchair arrived it was immediately obvious that it just wasnt suitable any longer, silly me had forgotten how in the last 12 months Seraphinas condition had meant that she had regressed from the level of development she had previously been at, extra tube 'attachments' had been added and more support was required to keep my little girl in a sitting position.
What had been provided was a standard 3 wheeler buggy with a normal 5 point harness and what was listed as a 'Medical needs bag' was in fact a simple net shopping bag underneath. Even the 'postural insert' was something more suited to a much much more able child who only needed mild support, not a child with movements she cant control, limited trunk control and who is prone to extensor spasms and Seizures.

I debated what to do...some people I suppose might have immediately listed it on EBAY and put the money towards a more suitable pushchair, far easier than anything else,but as a Christian I just couldnt do something like that.
To be fair Promise Dreams (the Charity who had funded this) were lovely about it.They ,thankfully had heard of Rett syndrome and the regression it caused and so said they would contact the Company (Recare) who had sent the pushchair and explain the situation and ask for a refund which could then be put forward for another pushchair or another 'dream'.They advised me to do the same.

I phoned Recare and,full of apologies I explained the situation (though with hindsight I dont know what I was apologising for....Im sorry my child has Retts and not 'just' cerebral palsy as before? Im sorry she has regressed and is much less able than she was and much more sick??
They asked me to put in writing why the buggy wanst suitable and sent me pictures of the only other (and equally unsuitable buggy) and said someone would phone me on Monday.

No phonecall came...I tried phoning myself and was met each time by an answerphone. So I emailed them.
A few hours later I had a one line email saying they were waiting to hear back from Promise dreams.

Meanwhile I looked into other 'dreams' for Seraphina. I didnt have to look too far as Seraphina decided that evening to demonstrate to us that she understood far more than we had ever imagined.We had been trying to communicate with her by eye gaze since Retts had taken all her speech but one night whilst I held her Peppa pig toy and pressed the buttons for her I said 'wheres peppa pig?' and she took my hand and made my finger press the Peppa pig button! I laughed thinking it was a fluke and said 'ok then,wheres danny dog?' and got the same exact response.I felt tears pricking my eyes...could it be?
she say looking at me with her ands clasped and her steryotypical wringing movements getting faster. 'Wheres the umbrella?' I asked and then held my breath.she reached for my hand and I said 'No,YOU do it use YOUR hand', and I separated her hands. She looked at me again and then with what can only be described as utmost concentration she moved her hand forward shaking and twisted round so that her thumb rested on the button saying 'Umbrella'. I wish I had had someone with a video camera at this point.I exclaimed with excitement..'you understand..you really understand dont you!! and hugged my amazing little girl.From that tearful wonderful moment onwards I KNEW what Seraphinas dream would be...a communication aid,a means to telling people what she wanted.I felt like I had wittnessed a miracle.

So I trawled through online catalogues and brochures and phoned companies asking about different Communication aids..Tobii s32,touchscreen computers and Ipads the list was endless until I found a video on utube of a little Girl in America with retts who was using a communications package which loooked absolutely fantastic! Decision made. Now to get back in touch with Promise dreams.

I phoned promise dreams who were once again really polite and explained with embarassment that Recare had told them that in order to courier back the pushchair from us and 'repackage it' (um why as it had been put straight back into the bubblewrap it arrived in) it would cost £200 which would have to come out of Seraphinas allocated dream money!!!

heartbroken is not the word, we looked online at trading standards whose website suggested that according to the distance selling regulations they should NOT charge for postage back OR repackaging...and CERTAINLY not £200!!

The pushchair was couriered back to them....the documentation from Parcelforce clearly stating that the cost was £31.88 hmmmm.....
I do wonder how some people can live with their conscience knowing that they have ripped off a charity whose sole aim is to grant wishes to life limited children and knowing that one little girls wish of being able to communicate has been dashed in order to keep their companys books balanced.

So for now Seraphina will continue to live trapped and restricted and I will live with the knowledge that she understands so much more than we thought and feel as I do now,that I have failed my little princess. She blessed me with a magical moment in which she tried and succeeded in letting me know how much he wanted 'a voice' and I have failed to provide her with the means to do so.

Its not a good feeling.

An Open Letter to Special Needs Professionals (just had to share this)

2010-09-29T10:23:00.000-07:00

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello...

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well ... you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see ... a confident parent ... or an angry parent ... or a happy-go-lucky parent...

You might think that I understand everything ... or nothing ... or that I have all the experience in the world because I have done this before ... or that I know the rules ... or that I don’t know the rules and that is for the best... You might believe ... that I am high maintenance ... or overreacting ... or maybe neurotic ... or disengaged and uninterested ... or that I don’t really care ... or maybe I care too much...

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents ... the ‘special’ ones ... can be a pain in the ass. I know that. We know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves.

We are your harshest critics. We are our own harshest critics too.

We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

~ By: Pia Prenevost

*I received this in an email from another Rett Mom and thought it was just TOO amazing not to share, it is like the words were taken right from my heart and mind!

a friend posted this on facebook,the sentiments are mine exactly,so so true I had to share as I am sure there are many other 'special' mums out there who will relate to this x

Its been a bit full on..

2010-09-16T10:08:00.000-07:00

This week has been a bit of a mixture to be honest.
On Monday we had our initial visit from the representative from Acorns Childrens hospice.Those that know me will know that I had been dreading this meeting.We had the referral done months ago by our Community Nurse and as long as it was this vague 'referral' and nothing concrete then everything was fine and I could happily file it in the back of my mind as something I didnt need to deal with now but sometime 'in the future'.
I had quite honestly thought of a hospice as somewhere children went to die...well in truth I suppose it is but I found it was also a lot more and the hospice lady I was so dreading meeting was actually the nicest person you could ever wish to meet!
She wasnt pushy,she wasnt judgemental and actually she was remarkably easy to talk to and I found myself talking to her more than I have ever talked to anyone.She showed me pictures of the hospice and ...well I dont know what I expected it to be like but whatever exactly my pre-concieved ideas were it WASNT .It looked like an extremely bright sunny and happy place and I could already see how Seraphina would love the sensory room and the garden.
I breathed a sigh of relief.Im still nervous of actually plucking up the courage to use the place but its not the gloomy hospitalised place I thought it would be and actually it was nice to be able to talk honestly to someone who 'KNOWS' If you see what I mean.

So that was the morning...in the afternoon was another big appointment...the first one with Seraphinas Consultant in about 10 months.I really didnt know how this was going to go...
She was lovely as ever, I found myself unable to say how 'dumped' we had felt with no means of communication.She too has a lot on her plate and although I still believe that Seraphinas diagnosis could have been delivered in a somewhat more sensitive manner I was also reminded on talking to her exactly why all those months ago when she spoke to us on the ward,why she made such a lasting impresion on me and why I was determined that she would be Seraphinas consultant one day.She is human, I think she does truly care and I do think that she has Seraphinas best interests at heart.When I think of all the rubbish we went through with her neonatologist and how that nearly caused me to have a complete melt down, all the totally unfounded accusations we had been put through before she had her diagnosis of Cp and then Retts I thank God that we have this Consultant now.Its so nice to have a consultant you can have truly honest discussion with and who respects you back.

So Seraphina has Retts,of course one of the first things we asked was about life expectancy. She was honest about this and said that she had had a girl not unlike Seraphina who had Retts and she ,in her words 'managed to get her to 19'..... but of course this child didnt have the complications of Cerebral palsy,prematurity and as the consultant saifd 'she didnt have Seraphinas bowel'.In the next sentence we decided that 'lets just try and get her through the winter'

Its daft isnt it I found myself going 'Wow' as if 19 this was some grand old age like 102 or something.Only afterwards did I think....and process....its really nothing at all and the prediction of the consultant at BCH or 6 or 7 is even less.likewise the challenge of 'lets try to get her through the winter' looms even larger as a bear under the bed does when you are 3.

I comforted myself with the fact that she had been fairly stable healthwise for the summer so we were on the up,right?

But no,Seraphina obviously detected my optimism and decided to throuw a spanner in the works.she had a seizure on Monday evening, another on Tuesday Morning and then on Wednesday she was so so uptight and irritable she was like a little animal grinding her teeth,scratching her arms and legs, air swallowing for England and moaning 'Mmmmmmm,mmmmmmm' continually whilst wringing her hands and scratching her palms so much she split the skin on them.I tried everything so soothe her,gave paracetamol but nothing would stop these repetative motions..she was also withdrawn in her own little world...almost not quite 'with it' if you get what I mean.
I actually posted on FB when she finally dropped off....to me singing Eva Cassidy's 'somewhere over the rainbow' a song which she loved.
And then the seizures started lots and lots of myoclonic jerks which woke her up repeatedly she drifted off only for them to come again and again and then she went rigid arms flexed eyes open and head turned to the left followed by tremors.This was accompanied by her sats dropping...thank GOD we have a sats monitor as this has saved her life more than once.I watched it step down in increments to 85% and just sit there.I pnhoned a friend at that point to ask them to pick up the children as i knew I wouldnt leave her.Then as I wa on the phone she decided that 85 wasnt spectacular enough and chose 78% as her 'number of choice'.I dont truly understand why her sats were so low as she was breathing quite rapidly and noisily but looked very very pale. But hey ho I decided ,this had been going on for 6-7 mins and so I gave her Buccal Midazolam.Thankfully this worked but when I phoned the Com Nurse it was decided as her sats were still wobbly on double the o2 she usually has that she ought to be seen by the Paeds at hospital.
So a while later I was in the Taxi to hospital.She had only got sats of 91% when she arrived there still on double o2 so it was decided she should have a chest xray.
Once again whilst waiting I got the student doctors,this does make me laugh especially as you hear them at the desk beforehand deciding who is going to get the 'short straw' of interviewing us lol.I did mention to them we always get the students because Seraphina is probably a Paediatricians nightmare lol...they had to agree, who says hospital is without humour!
Anyway we then saw a very nice male consultant who wanted to keep Seraphina in and give her antibiotics.He thought she had a Urine infection and that she had probably aspirated when she was fitting....we 'discussed' her staying in *grin* with the result that he prescribed antibiotics for her and we went home :) think he realised that it wasnt a good idea to mess with me rofl! and to be honest she was more likely to catch something else in hospital!!

So we have been at home, she hasnt been particularly happy and her tummy is dishing out lots of what I term 'shrek bile'...if you have seen the movie you will have noticed the particularly violent green colour of this character (the people of Sheffield childrens hospital now know exactly what I mean now and appreciate my 'way with words' :)
However she hasnt fitted again so I am giving her the benefit of the doubt until the AB's have kicked in.
This sudden unexpected outburst has reminded me how poorly she can get quite suddenly though and I have to say I am dreading the winter even more now....lots of praying needed I think.

2010-09-12T10:54:00.000-07:00

No real reason for this post other than to share with you this wonderful picture of my little girl without her oxygen on.She has such wonderful brown eyes,I love my girl so much.If a look could spur me on to make everyone aware of Rett syndrome and the importance of finding a cure ,then this is it. Love you sweetheart,more than you'll ever know x

Results day

2010-09-08T08:02:00.000-07:00

Today I came home to find a letter on my doormat..it was a photocopy of a letter sent to Seraphinas Neurologist.In it was a copy of the printout from the regional genetics service detialing the specific mutation Seraphina had.

Seraphina had been 'diagnosed on presentation' as having Rett syndrome as well as Cerebral palsy but had blood taken to look for any Mutation on the MECP" gene which would confirm that diagnosis.This was in February...

I ended up chasing the results myself last month with Rett UK's help (who incidentally are fantastic,especially Julie their family support worker)The results got sent to our consultant who was then completely unavailable to give them to us!

Despite phonecalls from Rett uk to both the geneticist and consultant and assurances from both they would 'be in touch' we had nothing,no appointment,no phonecall...we just had to sit and wait.With that waiting came the tentative thoughts that 'perhaps they were wrong' and Seraphina had ony a developmental delay,something that could be 'fixed' somehow if only I trawled through the internet looking for the right therapy,the right 'answer' to all her problems.

I spent many sleepless nights researching therapys and reading about Nerual plasticity etc etc until my brain hurt.

Two weeks ago we had a letter from the geneticist in Birmingham.stating matter of factly that Seraphina had a Mutation on the MECP2 gene and they needed blood from both David and myself..'oh and please get the sample taken at the begining of the week as it makes it easier from a transportation point of view' tagged onto the end.

Their bluntness astounded me...what can I say.I wanted so much more information then,which mutation (I knew little enough about the genetics surrounding rett syndrome but enough to know some mutations were much more severe in their outcome than others)...I phoned the geneticist and was told she would phone me back....two hours later i had a message saying she was too busy to speak to me.....

Anyway back to today....still no letter/phonecall from anyone regarding this potentially devastating condition.

The letter contained a photocopy of the results from genetics which had been sent to the Neurologist,physio,OT everylone locally involved in her care stating that she had a Mutation which had not been previously recorded...she is the only child with this specific mutation so far. Typical for my Seraphina always wanting the limelight and doing things 'her own way'

What saddened me is the fact that everyone else dealing with Seraphina had been sent this leter before we had even had chance to have a discussion with her consultant ourselves!

David phoned the consultant straight away only to be told she 'wasnt available',when he stated that so many professionals had been sent this letter before we had had a chance to discuss her diagnosis she miraculously became available. Re the letter her only response was 'well you kind of knew anyway'

To put it into perspective my husband used this analogy...say you went to the hosptial and the consultant said 'Im sorry but i think you may have Cancer,we will do some tests'

YOu have the tests and await the results...in the meantime you have a letter come through saying your tests show a cancerous growth...would the consultant then say 'oh well you kind of knew anyway'??

Needless to say the vague hope that they may have been wrong ended today.Today I feel like the bottom fell out of my world.

Rett syndrome is such a competely devastating condition.My girl is lost to me with no immediate hope of cure trapped inside a body which wont let her live like a normal little girl.

But we will move on...Rett syndrome has already been reversed in a Mouse model,it is possible we just need to find the cure/therapy which will do it in humans.

I hope that this story so far and all i post in the future will serve even in a little way to make people aware of what is a little known syndrome.To show the reality of what real familys face and the journey they take with a child like my darling Seraphina.

And on a lighter note...the piggies (had you forgotten them?) she has a new favourite.....Mikey :)(his pic is at the top of the page) named after the very lovely Mike who sold him to me.

Its been a year..

2010-07-25T10:07:00.000-07:00

Seraphina now :-) Top photo shows a brief oxygen free moment so I could take a pic of her beautiful face:-)

Seraphina on Christmas day 2009

cant believe so much time has passed since my last post on here. So much has happened.I will try and catch up but will probably miss out loads.

Probably one of the main things is October last year Seri has a session where her gut bloated out and she was in lots of pain we got admitted to Sheffield Childrens and they put a tube up her bottom to drain away the poo,then she was restarted on feeds etc etc and we got let out on the 17th November.

several days passed and then the same thing happened again but this time MUCH MUCH worse.She was having dark green bile coming out of her gastrostomy,her tummy was bloated and hard and then she started having great difficulty breathing,it was awful.You dont want to rush into hospital at any little thing in case it sorts itself out but then you are sat panic stricken and watching for any little change.I sat up with her all night and she just lay motionless wimpering and looking weaker and weaker.amazing looking back how quickly she deteriorated.We ended up calling an ambulance on her birthday.she got admitted to UHCW on the ward but only stayed there around 15-20 mins before being transferred to HDU and then only overnight before being transferred to Birmingham Childrens Hospital as she was on 20 litres of oxygen, antibiotics, salbutamol nebulasers,another drug to open her airways and nothing was working.

When we got to Birmingham they informed us that not only has she got Bronchiolitis but she also had a siegmoid Volvulous (where the bowel twists ) and had to have emergency surgery.The surgeon asked me if I wanted a stoma bag when he operated, so matter of fact! I was horrified and said NO! my little girl had enough holes already without another one to add to the collection.

Waiting for her to come out of surgery seemed to take forever,eventually she arrived back at HDU. but something wasnt right,I just knew there was something wrong still but the nurses just looked pitying and told me to relax, she was transferred to the ward as they needed the HDU bed....and it was then things started to go wrong.Her oxygen requirement started creeping up higher and higher,her temp went up eventually we got to 98% oxygen and the staff on the ward were beside themselves. To give them credit the nurses on the ward at BCH were brilliant Seri had a nurse in attendance at all times in her room watching her constantly and trying desperately to get her an ICU bed,when she started fitting they were at the end of their rope with the HDU/ICU staff who came down and said she wasnt bad enough etc etc.I repeatedly corrected them when they said she wasnt breathing hard enough and told them she didnt have the energy..all that would happen next would be that she would start having apnoeas as she ran out of strength to fight any more. They took a chest xray...it was bad, she had pneumonia on both lungs as a result of having to operate when she already had a chest infection. But still there was no space for her

Eventually the inevitable happened...she stopped breathing,again and again her sats dropped as she just couldnt fight any more.I cradled her head in my arms and kept telling her to hang on and how much i loved her.the look in her eyes killed me,so helpless,pleading with me to do something and saying 'Mummy I am so tired,do something..'

One Doctor came round to see her and called me outside.He plainly said to me 'Look we see yor daughter as a piece of meat with a stomach,lungs and gut non of which work properly,she has no life,In my opinion you would be better not to take her to ICU but just let her go.If you get us to intervene then all you will be doing is commiting her to life' I was horrified,speechless........

When the ICU Doctor came round this time he just took one look at her and then turned to me and said..'you KNEW this was going to happen 48 hours ago didnt you.' Yes' I replied (exasperated by this time) 'I know my little girl'.Then he asked me if we had any end of life plans for her and what we wished for her if the worst should happen

She was taken to ICU but was too weak by this time to cope with CPAP and so they put her on BIPAP,she needed some chloral to calm her down and they got the stuff ready to intubate (they warned me they had a low threshold for intubation on her as she was so weak) I once again whispered in her ear 'come ON Seri you CAN do this' praying to God for help and my prayer was answered she started to settle into the rhythm of the machine.

Christmas was horrible as was new year.I saw very little of the children as Seri was not in any state for visitors.

I will always remember new year the most,Seraphina was at her sickest (her lung had collapsed) on more drugs than I cann remember the names for...the clock striking midnight in ICU.The nurses had a couple of televisions on showing everyone in Trafalgar square as they handed out fizzy apple juice to everyone. I drank mine and then as the clock struck I bent down to Seraphina who waas still on Bipap and completely drugged out of it on Morphine and Ketamine and whispered ' Happy new year sweetheart' and kissed her.Not knowing whether I would ever see her open her eyes again.

I honestly felt like my heart was being ripped in two.

I dont remeber how many days she was on BIPAP exactly,I know she was in ICU for over two weeks and I spent every day and every night sitting in a chair by the side of her....thank goodness for coffee!

As soon as she was off BIPAP I wanted her transferred to Sheffield,they all knew her there and the Nurses from S1 even phoned me on ICU to see how she was doing.

I was so glad when eventally we ended up back in sheffield.Seraphinas bowel had gone into shock and no matter how much the doctors tried she wouldnt tolerate anything. It was decided to start her on TPN and as she had had a long line and a femoral line in and pulled them both out they took her to theatre and put in a Broviac linewhich was a longer term solution.

Well to cut a long story short after a very very long stay which involved a UTI and another infection and much trial and error trying to get her gut working she came home in the middle of January......oh happy day!! We had our Christmas all over again with presents and it was wonderful. seraphina came home with her line in (Just in case) and we got used to the routine of flushing it and dressing it twice a week.

Now to move up to the present....we have moved house so that we can have adaptions done to build seraphina her own bedroom and bathroom.Hopefully work will start soon on that.

And.....Seraphina has been diagnosed with Rett syndrome,another blow.

She no longer says any words, she doenst stand and she doesnt take steps, she grinds her teeth,repeatedly wrings her hands and wipes saliva all over her face.Yet she tries to communicate with her eyes,cries when we turn her programmes over:), she LOVES Humf! She very rarely looks at you but smiles lots and is very ticklish!

We know her life is limited,we have been told the average expectancy is 7 but try not to think about it.

She is gorgeous,a total blessing...my world.

2009-08-04T12:49:00.000-07:00

We have just got back from holiday..we went to Skegness to a specially adapted bungalow which is owned by SCOPE and therefore subsidised by them.The weather was a bit unpredictable but needless to say we managed to have a nice time.Seraphina's favourite day was Hardy's animal farm.She loves animals and we went round showing her the ducks and piggies etc etc and signing them all to her in makaton.They had tractor and triler rides too and even had a ramp so that Seraphina could go for a ride :)..she thought this was brilliant.

We managed to get onto the beach where the children built the customary sandcastles and the girls got made into mermaids by mummy carefully burying their legs in the sand and moulding it into fish tails.

Both Samuel and Lydia had their birthdays...lydia having hers a day early so that she could pick a birthday treat place to go for the day.She chose the Seal sanctuary and we met up with our lovely friends Hazel,Colin Romy and Tansy.A good time was had by all at the sanctuary and then back on the beach in the evening where they all got thoroughly wet and sandy lol.

Today the rep came out from Chunc and set up our Chunc 45 which we now have on loan till the 21st Aug.Seraphina sits so well in it and as expected it is exceptionally light....she christened it this evening however by pooing all over it lol so the covers are being thoroughly tested :-)

The other rep mis delivering the xpanda seat this week too so that we will be able to make up our minds on the best one all round for Seraphina.

We are still trying desperately to raise money to fund this new wheelchair for her..the CHUNC is slightly more expensive at £3000 but theres not a lot in it to be honest.

so far we have raised £1344.85...a long long way to go to reach her target.Donations can still be made using Seraphinas paypal account and gifting it if you want Seraphina@claniverson.co.uk

just in case some millionaire is reading this rofl!

Tomorrow is an exciting day as is Thursday...tomorrow morning we get a working cooker!!!!.I cant believe I will actually have an oven to use after6 months without one..the children are requesting a roast dinner as soon as its connected :).Thursday Seraphinas new bed is being delivered ..finally,so then begins the task of training her to sleep in a bad again after 12 months of sleeping in a pushchair,Im sure that will be fun lol.

well I will finish this post by adding apicture of seraphina in the CHUNC taken this afternoon.

what a week!!!

2009-07-11T11:44:00.001-07:00

This week has been exceptionally hectic and fraught,so much so that I am really glad its the weekend!

It started off with Lydias trip to the childrens hospital to get the results of her MRI in more detail,ie what it was on her spine.
Turns out it is something called syringomyelia,a disease in which a cyst filled with cerebrospinal fluid (called a syrinx) forms on the spinal cord and eventually grows and compresses and eventualy distroys the centre of the spinal cord.To say we were shocked is an understatement,horrified doesnt even come close.
she has already stqarted to lose sensation accross her shoulders and has a strange gait and weakness in her right leg.So the neurosurgeon is repeating the MRI within the next few weeks and we will then take it from there.They can operate ad put a shunt in but of course it isnt a cure and not without its risks.

Next came Joseph,he was attacked by the school bully and finished up in a&E with a suspected broken wrist!¬ he has to go to fracture clinic next Thursday to be re-xrayed.

On Thursday Seraphina was suddenly taken ill with a high temperature and cough/snotty nose.GP put her on antibiotics and Tamiflu as he thought it was swine flu she had caught.Needless to say we were really really worried about her...subsequently though she has responed well and is a lot better now with only a bit of a cough to show for it.Wont ever definitely know one way or the other whether it was swine flu as they are no longer swabbing patients bu t whatever it was it seems to have passed relatively quickly.Now to see if the is considered well enough on Monday at her pre-op to go ahead with her surgery on Wednesday...sincerely hope so as we have been waiting months for the botox!!

Then on Friday Aimee has a freak accdent with a glass with involved her going up to A&E to have her leg stitched!!!

Far too much excitement for one week!!!!!

Fundraising seems to be going well with around £900 being raised so far and a charity event going on this evening with a local DJ... hoping it raises some more towards Seraphinas wheelchair.The rep from Chunc came out this week and demonstrated the Chunc 45.Its so so light to push,just got to decide between the Panda and the Chunc seat,My Chunc rep is going to loan us a 45 to try for a week starting from the 4th August (when we get back from holiday) so hopefully that will help the decision making :)

oh the heat!...and piggies!

2009-06-30T04:30:00.000-07:00

I dont do heat very well...that is to say I dont do the humid swealtering heat like we have at the moment.Serpahina is very much like her mummy and doesnt do it either,this morning she has been crying all morning and has just dropped off to sleep.The only thing which made her smile was stroking May mei who is one of two 'new additions' to our piggy family :).PIGS! I hear you cry...nope not the big fat pink snouted variety (although I would quite like one of those one day lol)...much cuter smaller furry Guinea pigs (or Cavies to give them their proper name).

I have to say I have fallen in love...it started many years ago with my first piggy....Pookie who was a not show standard by any means Himalayan-type piggy and was my first love. He lived until he was five along with Gingernut who was an orange and white coronet-type.we had a few others along the way but when Pookie died and the others got wiped out by a nasty infection despite vetinary treatment I didnt have any more...until Eve my 6yr old wanted a guinea pig to replace a very bad experience with Hamsters (something I never plan to repeat!)...she has a lovely mongie pig who she has named Muppet lol but who is her pride and joy (he can count apparently :-) !!)
Well following on from that I decided to do a bit of googling and came accross 'pedigree' piggies...inparticular Texel and Merino pigs . Well I was sunk wasnt I (do i need to tell you what came next?).I found a lovely breeder and my piggy collection began with a beautiful piggy boy (Texel/ Merino) called Coco Buttons who is the most gorgeous chocolate colour,very hairy and looks,when He moves,kind of like a walking toupee lol!,with him came Princess Tigerlily...unfortunately she got lonely and so 3 rex piggies came to stay too (but they were too cute to leave even though i only went out for one!).
Then yesterday Maymei and Princess Stella (as in the drink ) came to live with us. Now this very enthusiastic ramble lol is actually going somewhere lol....Seraphina,as you know has a cortical visual impairment so her vision is ...well pretty poor on some days.she also has Sensory processing disorder which means (in her case) that she is terrified of touching soft things and certain other textures.Well not only have the pggie additions been cute theraputic for me BUT they have also been an absolute blessing for little Seraphina.
Little did I know that we would get to the stage where I am convinced that she sees them scuttling about when I have them indoors...but she also turns to look at them and PUTS HER HAND OUT TO STROKE THEM!!!! I couldnt believe it the first time she did that.Her favourite seems to be Coco Buttons at the moment (Mr Toupee) but she also strokes the others too and May Mei made her smile this morning too when she has been grumpy otherwise.
Im now planning my next new additions...including a Himalayan,who I am sure will remind me of my Pookie.Im thinking that the contrast in the black and white of a Himalayan will be more visable (especially on bad days) to Seraphina.

Well the days are ticking away now...not long till Seraph's next surgery.She has her pre-op on the 13th July and Op on the 15th.Im already getting nervous and wondering how she will cope with the anaesthetic this time (hopefully she wont need ICU).I know its for the best but you never ever get used to them going into theatre.
Also on Saturday we are at the Childrens with Lydia...we find out what the growth on her spinal cord is :(...Im praying so hard that it isnt anything Nasty (Im sure you know what I mean).I will be glad when both are all over.

Seraphina's wish...her page/Cause on facebook (http://apps.facebook.com/causes/304589?m=3f1cca43) is doing well with 445 members so far and £313.24 raised out of a total of £3000 needed to fund her wheelchair and swing.there are also two events whaich are taking/have taken place (have yet to know the total raised from the cake sale).Hopefully we will raise our target before long and Seraphina will be in a more comfortable seat.

Well I better go and get some housework done (cuddle some piggies)...a womans work is never done and all that :o)

June update

2009-06-23T03:11:00.000-07:00

So much has happened over the last few weeks its hard to remember it all,life has been and still is a bit of a whirlwind.
We have had a bit of an endless stream of appointments on a day to day basis first Doctors then therapists so much so that it had begun to feel like 'real' life was disappearing into the abyss somewhere.So my dear husband,who could see I was starting to struggle with juggling so many appointments (I MEAN 3 hospitals in one day!) contacted our Keyworker andexplained that things were getting more than a bit silly and she said she would see what she could do about rearranging things.

I have since had a few 'free' days and really enjoyed taking little Seri to the park and also booking in for a regular Mums and tots group..its so nice doing 'normal' things with her.She loved the mums and tots especially as its set in a lovely big room....although after 15 mins she was totally whacked out and fell asleep in her wheelchair :)

Lydia finally has her appointment through to see the Neurosurgeons about the growth on her spinal cord...3rd July,so will see what is said then.
Samuel is keeping pretty well overall since being started on Montelukast the only bother is his iron level is still low at 9 so still on iron tablets and folic acid.

The biggest news has been regarding our darling Seraphina..
First of all we had her Orthopaedic review...her diagnosis was changed to Quadriplegic Spastic cerebral palsy.she has also got contractures in her wrists and scolliosis (curvature of the spine) plus a problem with one of her hips.This as you can imagine was quite a lot to take in.
She has been booked for surgery on 15th July...botox in her arms and legs plus examination under anaesthetic of all her joints/back and both hips.we go for the pre-op on the 13th- just got to keep her well in the meantime.

Then last Saturday we went to the Childrens hospital to see the Consultant Neurologist.
He was a lovely man and very understanding of our concerns about Seraphina.we had taken both a development report and videos of Seraphina which show the developmental regression which is taking place with her.It started off by her losing mental skills eg once she could say Dada with meaning along with Mama,bye bye,hello and wowa (flower).now she says nothing...

She avoids eye contact,has developed a habit of grinding her teeth constantly,self harms,rocks backwards and forwards in her chair and flapps her hands a lot.
Occasionally you get 'glimpses' of Seraphina but more often than not now she is in her own little world where it seems we cannot follow.
Now it seems she is losing some physical skills..she used to be able to hold one thing in each hand and bang them together...now she holds one thing,you give her another and she drops the first.

The Neurologist listened to us and carefuly examined Seraphina,when he spoke it was as if the whole world stopped dead 'I think your daughter could have something called rett syndrome' he said 'unfortunately it is a life limiting disease due to the range of complications and variables within it'.We were both struck dumb and sat there like a couple of stooges.He then went on to say that he thought it was a good idea to have another MRI scan and also Genetic tests for Retts.he also said the only other thing it could be in his opinion was severe autism and went on to explain in terms I couldnt understand take in or even remember what he would expect to see on an MRI...the only word I can remember was atrophy (which doesnt really tell you much).

So now we wait......

we went home and both promised ourselves we wouldnt google anything to do with rett syndrome... went home,david in the living room and me in the dining room....

.....and then called each other in to see what we had been watching on 'you tube' and other sites regarding rett and 'rett angels' who had already passed.When we found out it was also called the 'silent angel disease' we stopped looking.

Now I can think of so many things I want to do with Seraphina,so much I want to show her before she slips away completely into her own world and there suddenly seems to be so little time.......

We have been told Seraphina needs a new wheelchair,one with a 'dynamic back' which will accomodate her rocking and extensor spasms,that can be built up one side to try and correct her scolliosis and with more padding to make it more comfortable on her hip....only the dear NHS doesnt fund them so the OT says its down to us.I have contascted numerous charities but the average wait is 8- 12 months which seems such an age, and thats if they agree to fund.
So, we have set up a facebook 'cause' for her with a link to this blog.she has her own email address and her own paypal account,Im praying that some money will be raised by doing this as it seems our only option..other than the newspapers ,which we are considering as a next step.for now we will wait and see.......

24/4/09

2009-04-24T04:27:00.000-07:00

Above pic of an apprehensive Seraphina in her new standing frame...shes not sure about it!

Well we had the multidisciplinary meeting..lots of people couldnt make it as it was in the Easter holidays but the physio,OT,Com nurse health visitor were there.DFG was discussed a lot (Disabled fasclity Grant) the general consensus of opinion by people other than the OT was that Seraphina needs a downstairs bathroom and bedroom however the OT needs more 'proof'.She is going to assess her again at the bewgining of July and if she is stll the same then she will look into applying for one for her....of course now Seraphina has started to take a few steps on her own so potentially that could be used as a reason to stall for a bit longer! who knows.

My personal feeling is that it would make SOO much difference to her quality of life...beng able to have a bath safely would be a big one.It so hard carrying her now as she is a big girl with lots of uncontrolled movement.my back hurts more often than not now and it would be nice to have way of moving her safely.plus she would have her own bedroom instead of the living room.At the moment we are waiting for her bed to be delivered and so have thrown our front room furniture away to make space for it.I dont know whether her local Paed would be able to put some pressure on Ot to let her have a DFG...dont really know her well enough yet to feel Ican ask.

The real shocker this month has been Little Lydias MRI results...apparently she has a growth on her spinal cord.She is being referred to Neurosurgery in Birmingham Childrens Hospital for this but as yet an appointment hasnt come through.To say I was devastated is an understatement...but we will get through this as a family like we always do.Cant help wishing for a break though.This morning I waved her off on a trip with the school to Kingswood activity centre where she will be absailing/caving/quadbiking etc etc she was so excited lol! Im going to miss her so much...what a soppy Mum I am.

We finally were able to order Seri's car seat 'yay!' so hopefully we should have that in 2-4 weeks.That will be a great help as it has a turntable on the base so we can get her in and out of the car more easily.

Seraphina is into Peppa pig big style at the moment..its funny to hear her laugh when Peppa comes on...will have to look into finding some Peppa toys I think :) the other character she seems to like is Dora the Explorer:) I guess its the bright colours.

well I'm off to get a cuppa :o)

Where are we now....

2009-04-07T12:34:00.000-07:00

Once again its been quite a while since I have updated this blog,maybe I should just reconcile myself to the fact that it will get updated but ont always regularly :o).
Quite a lot has happened again...She got a diagnosis of cortical Visual impairment and is apparently borderline for being registered blind.She had a hearing test and has got to go back for a further test as they think she has an Auditory nerve impairment too.
We started doing Biomechanical rehabilitation work with her...patterning and so forth which we believe is helping her.She also now has suppliments of probiotics,fish oils and blueberry extract from a company called Biocare which we hope will help her brain development.

We went up to Sheffield to have her sleep study repeated but it was abandoned at 2am because of noise from Sheffield Uni students disco grrr...so we have to go back again soon to try again with that one.

She had seemed to make some progress trying to say a word 'flower' but then as usual her brain wiped it and she no longer does that which is sad.
We had a long appt with her new Neuro paed Consultant...who incidentally is absolutely lovely..........and she thinks that the damage to her brain is quite widespread and she could well have processing problems which would mean that things were 'wiped' from her brain.she was asking a lot about the other children (trying to build up a family tree) and her comment when seeing what other problems the children have is'Im quite interested in your family tree now I've seen it...........its quite impressive how unlucky you have been,in that people usually GET a break!' (no kidding.....and we have a medicine cupboard the size of Wales to go with it!)

We also asked her honestly about what her prognosis is likely to be,particularly what her life will be like/whether she will be able to look after herself when we are no longer around ..........the answer was not really what we wanted to hear although she put it in the nicest possible way.Her mental progress is slipping further and further behind and she is showing 'autistic traits'....she 'doesnt need' us,avoids eye contact,is no at all demonstrative,doesnt like being touched ...the list goes on.The Consultant feels that she will always be 'quite slow at best' and will 'always need quite a lot of support with life'.Its so difficult as sometimes I get excited that shes doing something,that shes trying to 'connect' with me only for it to be wiped and once again I lose my little girl and she stares blankly into space.
On a positive note a lovely lady from my antenatal club Hazel,who ha a very talented mum ( already made Seri a lovely taggie a while back) is maing Seri a blanket for her new bed with her name and taggies along the top :o).I am so so pleased and Seri will love it.Hoping her bed wont be too long in coming now.
We have also managed to get funding for Seraphinas new car seat!,they asked what we could contribute and then came back to us offering the lot as they said we had so much to deal with,so so pleased that we dont have to worry about trying to find the nearly £900 to pay for it,special needs equipment is SO expensive..this should last till shes about 11 though so will be well used.

On Thursday this week we have Seraphinas first multidisciplinary meeting,Im dreading it to be honest as so many proffessionals in one room is my idea of hell and I know I will find it quite intimidating.On the other hand only by doing this will we get a united 'way forward' for Seri.
Well Im going to leave it here as I am so tired recently..

worn out and hacked off!

2009-03-10T11:01:00.000-07:00

Its been a really difficult few weeks here with one thing and another.Seraphina ended up in hopsital for 10 days as she vomited through her wrap for the first time and aspirated :-( 24 hrs later she had a temp,48 hours later it was higher and by the monday she was really poorly so i took her to the GP who put her on antibiotics.Unfortunately they didnt seem to do the trick and by the time our clinical genetics appt came round she was really not well at all.I took her to the appt but she had a couple of nasty choking episodes whilst there and the Gebeticist had to hold her whilst I suctioned her out.We felt the best thing was to go straight round to A&E and it was there she was diagnosed by the consultant to have aspiration pneumonia,from there she was blue lighted to the nearest bigger hospital where we stayed in.She had IV antibiotics but the cannula went twice as her veins are so bad and so after 48 hrs she was dropped to normal tube antibiotics.Unfortuntely then her o2 requirement kept going up and she ended up at her worst on 10 litres plus 10 puffs of salbutamol every 2 hours plus saline nebs and prednisolone!

It was hard as she developed dumping again due to the antibiotics but no-one knew what to do,I told the Docs we normally used Loperimide for this.The nurses tried to give her normal Movicol medicine and Domperidone as well as Loperimide!!!I tried to explain that she needed no motility agent or laxative when she ALREADY had the runs and I was told that they would have to document me regularly refusing Seraphinas medication!!(exasperating or what!)

I then had this nasty consultant come round and ask why she was on so much o2 and medicine insinuating that I was somehow the cause of her being unwell and giving me the third degree!
This upset me so so much and after he had gone I just burst into tears,I couldnt believe that they could think that.He clearly had no idea about Seraphina and it seemed to be a case of..'if we cant explain it blame the parents'

I have since spoken to Seraphinas key worker about this and hopefully she will be able to liase with her Paed to prevent this happening again.

Meanwhilewe got discharged with Seraphina only able to tolerate dioralyte and the weekend with her can only be discribed as a nightmare.We tried feeding her with the weakest concentration of Neocate at only 50mls per hour but she was pooing so much that we were worried about her dehydrating so increased the volume to 70 mls per hour....result...she was still pooing and we had the added joy of neocate dripping out of her already quite raw and baggy jejunostomy stoma!!!aaaaggghhhh! so we had to turn it back down again to 50 mls per hour and pray that with the loperimide it would eventually stop.

Thankfully it did stop and with bathing her stoma several times a day and putting maxitrol on it half the time and the other half padding it out with Mephilex it seems to have calmed down a lot.We have also been upping the concentration of feed very slowly each day so now she is on half strength and normal volume of 60mls per hour so progressing well.
o2 wise she is still requiring double the usual amount when asleep (1 litre) but once again she is heading in thr right direction and she has long term antibiotics now to try and protect her chest a bit more and inhalers too.

How do I feel after all of this.......exhausted,disappointed, gutted that once again we as parents have had the finger pointed at us for our daughters problems..even though she has a diagnosis for goodness sake which comes with many different complications or complex needs as the medical professionals like to call it.
Disappointed that a child who is clearly not well was discharged...bit sad she was discharged not tolerating any feed,leaky sore stoma and raised o2 requirement??Thankfully we know what to do....but what if we didnt?
Anyway at least she is better now.Yesterday we were in Sheffield and she got signed off from ENT yay! one Consultant down lol :-).He has given us an open appointment so we can see him again at any time but otherwise he is very pleased with her.Then we saw her surgeon who was disappointed that she had vomited again but ,like us, was happy just to wait and see how things progressed.However he did mention in surgical steps that could be taken a re-do of the fundo as well as the oesogastric separation which we were please about as the Gastroenterologist had said that it wouldnt be done again after she had had it done 3 times already.
Nevertheless we hope that it doesnt come to that.We appreciate that fundos dont last for ever but we hope it will be a long LONG time down the line before we have to consider that..if ever.

Today we went to get Seraphinas new splints and have her shoes checked.We have waited since 5th Feb for her splints and so were really disappointed that when he tried them on they were miles too small!?! not sure how that happened as she had casts done beforehand so they have had to be sent back and wil be redone :( lets hope its not another month!.Shoes were the opposite story...they are miles too big and make her feet look ENORMOUS! so they have to re-order them in a smaller size :-( they were ordered before Christmas!!

Maybe my the summer she will have both splints AND shoes...now theres a novel idea *rolls eyes*

You may have picked up on my tired and slightly sarcastic tone...I think my views of the NHS have fallen quite a lot recently.I feel disappointed at the way disabled chidren are treated as a whole but even more so disabled children who seem to be treated as second class citizens because they can speak up for themselves.Whereas we,the parents,who fight every day for our children to be heard,to have the care they are entitled to and for medics to appreciate the complexity of our children...what do we get in return for our untiring determination???disbelief,accusation,red tape and weak excuses.

This example says it all really...

Seraphina doesnt always cry when she is in pain.When the pain is bad she grinds her teeth ...I can tell its pain when I look in her eyes and also because I know her.When she was at her poorliest she had paracetamol but still she was grinding her teeth and her eys told me she was suffering so I asked for some more pain relief for her.
The nurse came and ...asked her to tell them where it hurt!!! (she doesnt talk) then commented that she was quiet and not screaming the place down.I told them that she was grinding her teeth and that was a sign of pain where upon thwe nurse said 'oh my child grinds her teeth all the time..' and as an after thought added 'I'll ask'.
Needless to say no pain relief came dispite me reminding them as they said she seemed fine....
If SHE could have asked for it she would have got it but because she couldnt communicate to them she got nothing............

Snowy update

2009-02-07T11:05:00.000-08:00

Seraphina got her first glimpse of snow this week...couldnt take her out in it as shes poorly again :( but we bought some in and put it on the tray of her wheelchair,she just tentatively touched it for a while and then tried to eat it ROFL!,dont think she was impressed.

The big news for this week is ...Seraphina clapped!,came downstairs to find her in her chair clapping,you could see it was taking a lot of effort but she was so please with herself,especially when I cheered her.Also the Newlife Charity has agreed to fund the total cost for the bad that Seraphina needs,they have turned it around really quickly,when I had the interview I dont think they could believe how we were living and how little professional support we were getting.Now we have to take our living room and turn it into Seraphinas bedroom (however I have been told that they could try and provide us with a shed to put our furniture in!).We got turned down for a Disabled facilitys grant for the downstairs bedroom and bathroom she needs because our house is overcrowded and Seri could potentailly one day be able to crawl upstairs!!!
With all Seri's feeding equipment,standing frame,gait trainer and wheelchair theres not a lot of room for anything else.

Its going to be busy this Monday.In the morning we are in Birmingham Childrens hosptial for Electrodiagnostic testing on her eyes..basically we get to find out how bad her vision actually is and whether she has the potential for beter vision or whether it is actually a cortical problem.
In the afternoon she is at Exhall Grange having a joint assessment with the OT and Physio.Still havent got anywhere with speech and Language got the feeling they just dont want to know.Got fed up of leaving messages now.All I have heard back is to contact them when she can eat orally!...oh well thats fine then isnt it forget the fact that she cant communicate grrrr!

other appointments we have lined up is ....clinical genetics,ENT,sleep study,Opthalmology and surgeon...busy busy busy :-)

Time flies

2009-01-28T12:07:00.000-08:00

I really must get better at updating this blog,life seems to be a bit of a whirlwind at the moment with so much going on.

First Seri, well she has now finally been seen by the 0-3 service (portage) after being on the waiting list for months.They have come out and done a full assessment basically physically she is at about 8-9 months and mentally about 3 months with hearing and understanding being of biggest concern.They gave me a copy of the assessment to take to my next Neuro appt as there are concerns that she has 'another learning disability such as autism'....well no surprise there then lol!...will wait and see what happens with that one.She has also had her EEG done at birmingham,dont know the full results yet but they have now started her on Diazepam twice daily to try and control the muscle spasms that she is still having despite being on the maximum dose of baclofen.I was concerned in case it made her zombie like or tired all the time......I neednt have been as it doesnt at all.I give her the last dose at 5pm and then she has baclofen at 8pm.Two nights in and she has slept throughboth nights! never ever has she slept through the night so I wonder now whether her restlesness was more to do with spasms....let the sleep continue!!!!! :-)

Samuel meanwhile has been put on Montelukast (singulair) to try and control his gut symptoms as his last test results showed that he is still anaemic and STILL testing positive for blood in his stools :-(.It has improved things re his runny poo and bad excema but he hardly eats anything at the moment and doesnt want to drink his milk either so i can see a downward trend in weight again,his ribs are showing and he seems very pale.School whacks him out and he falls asleep in his buggy most days on the way home.Dont have any magic answers,just carrying on till next appt in Feb.

Will end this post here as kids are mucking about upstairs instead of going to sleep...will leave with a lovely pic I took of Seri today...oh and the smudges on her face are wispa bar...she pinched mine and smeared it on her face,she didnt realise it was food...and yes I did pinch it back!! :-)

Just stuff really..

2009-01-10T12:23:00.000-08:00

This week has gone in a bit of a blur....I've spent hours on google trying to find a 'cure' for Cerebral palsy...with no success obviously.I've read and read until I couldnt read any more about CP and still feel none the wiser.Ive even dreamt bout Cerebral palsy and physio appointments etc.
Sad I know but just wanted to find 'something' that would make it all better.I dont know how i feel right now.....alone,confused,grieving for the loss of hope for a 'normal child' one day.Trying to get my head around the fact that this is for life,its not a condition that will go away.

Also remembering too...something which made me feel a little better in some way.I had always wondered whether her horrible experience in Leicester had led to CP (she had some really close calls whilst on the vent...we are talking sats dropping to 19%!) I KNOW that she came out of that experience a different baby...something of her mentally was lost at that point but I also remember in special care being concerned and asking the doctors why she couldnt straighten her legs....you notice this king of thing when you are holding her legs for a nappy change.Anyway the Doc really didnt have any answers and dismissed my concerns saying that it was probably because she'd been curled up in the womb....she was 4 months old at this point.Plus she always faced tha same was and didnt turn her head to the other side at all and had a right side/hand preference,she can=me off CPAP and breathed with her tongue hanging limp out of her mouth......NOW I see that my concerns were real and showed signs even then of her CP .I just didnt know what it was,just that something 'wasnt right'.
I have videos of her and now,looking at them it seems so obvious.....isnt hindsight a great thing.
Anyway at least I feel reassured that it didnt happen in Leicester although it probably didnt do her any good.

Yesterday i got my carers allowance and I have blown most of it on buying her some clothes which fit lol.... age 3-4yrs (big girly) and today some toys which i hope will stimulate cause and effect.
I got an Early learning centre drum which when you tap it makes a noise and light up different colours, a train which has balls in it which popp about when she pushes it and a spinning top which has coloured balls in it when the top is pushed down and plays a tune....she hasnt got the strength/co-ordination in her arms to push it down though so that isnt so good at the moment as I have to do it for her.maybe in time she will do it.
Finally our birth to 3 service (portage equivalent) has picked up her caseload and will come out for the first time on Wednesday.Im so so pleased this is happening as she is really behind now....well I know that she is likely to always be 'retarded' according to her diagnosis but all the same it bothers me how uncommunicative she is etc...............this is probably going to sound overly dramatic but i just have this feeling something else is going on....like an autistic spectrum disorder,there I've said it.This has been on my mind for months.....I KNOW there is something else happeing with her....its not just that she doesnt communicate,its that she has no desire to,she hates being touched and will pull away from you if you touch her hand,she avoids eye contact,she gets ...like sensory overload.she has never wanted to be hugged or kissed.None of this is normal baby behaviour is it.
maybe these questions will be answered when we see the paed in March....maybe its just nomal for cerebral palsy children??who knows.
It would be so nice to be able to sit down with someone who has a child with Cerebral palsy and chat through some of these things...and how they coped with their child diagnosis too.I know a lovely couple who have a little boy who is 6 with CP,they are SO together though about the whole thing,they know what he is entitled to and fight for it accordingly and just generally seem to be doing so much better than me with everything,where as me...well i just want to cry and feel so overwhelmed and alone at the moment. DH seems pretty ok with it after the initial freak out,but I feel guilty about it and a thousand other emotions in between.
Im going to end here before I end up crying again.

A full diagnosis

2009-01-08T10:00:00.000-08:00

apologies for not updating sooner...we were struck down by this awful flu bug and so wiped out for Christmas and only just feeling 'back to normal'

Anyway we saw Seraphinas new Neurologist at Birmingham Childrens hospital on Monday to get a more in depth diagnosis etc rather than the 'we think she has cerebral palsy'.Was really hoping that they were wrong to be honest. Anyway,Neuro was lovely and took lots of time to examine her and then called in another consultant (so we knew then news wasnt good) anyway to cut a long story short she has been formally diagnosed with Spastic diplegic Cerebral palsy with left Hemiparesis and severe progressive microcephaly. from what I can understand from that her legs are worse than her arms (although her arms are affected) and her left side is worse than her right,also her head growth is next to nothing (1cm in the last 12 months) which is suggestive (their words not mine) of severe mental retardation. We are going to be admitted for overnight EEG as he suspects that some of her sleep problems are due to seizure activity and she will also have a normal awake EEG.oh, also got to have urgent hearing test and speech and language input as she is communicating very little so he is concerned about that.She also needs to have botox in the back of her legs. He doesnt think she can hear properly and we already know her sight is poor.He didnt think another MRI pr CT was worth it as its already known she has enlarged cystic right ventricle and PVL,siad it would be putting her through another GA for nothing really.anyway,I kinda feel like I've been hit round the head with a breeze block to be totally honest I feel a bit down about all this as he said he was sure she will never be very mentally aware! ..

last few days have passed in a bit of a blur,tried researching food/suppliments that might 'cure' her or stimulate brain growth, contacted Face to face.....to find they dont support my area,neither do Contact a family so that blew that one out of the water lol.Would just be nice to sit down and have a chat with someone who has a child like Seraphina.......theres always quetions you think of asking after youve seen the docs and some of them could probably be answered by a parent of a similar child.
This cold snap has really upset Seri,the spasms in her hands have been really bad...yesterday she couldnt move her arms at one point,they just 'locked' at the elbows and her legs went at the same time poor love screamed and screamed.I gave her baclofen and calpol but it took sooooooo long to work.There must be something better to use for there kind of emergencies,seems so cruel to just leave her.Should have asked Neurologist but you always think of these things afterwards and I dont know if I dare phone and leave a message for him :-s,not due to see him again till March.

Pets......

2008-12-01T09:31:00.001-08:00

Lydia with Toffee,our ancient Rabbit....who thinks he;s a dog! and Harvey..our yellow Labrador Puppy who we collect on 13th Dec.Pic shows him at 5 weeks old aaaahhhh!

Sheffield update from 27th November

2008-12-01T09:09:00.000-08:00

right we spent all of yesterday in Sheffield....I have to say I went with really high hopes of having a diagnosis for Samuel and good chat with Gastro. alas this was not to be because unfortunately the gastro Samuel has been referred to was unavailable to speak to us even though he was in clinic.I did find this a bit disappointing as although Sam has been in clinic twice and also been admitted we have not seen our gastro once! Apparently Samuels colonoscopy and endoscopy showed inflamation,nodules and ulceration which would be in line with an allergic condition such as an eosinophillic condition BUT his biopsies apparently came back normal .She registrar said this could be because he was having more neocate and less foods that he was allergic to at the time of the surgery so doesnt prove anything either way which is frustrating to say the least.PH test result he said 'showed just acid all the time' but he said the probe was too far down....I then corrected him by saying that it was pulled back to the correct place and then re-xrayed but because that wasnt documented in the notes they are more or less disregarding the test.I said i found that frustrating and he said 'well hes on omeprazole and so theres nothing we would do' As the clinic was over running and we had an appt downstairs with the surgeon we were told to go and see the surgeon and then come back up,by which time the reg would have discussed Samuel with the Gastro con and dietician and then formulated a plan. So we went down to see surgeon and came back.....to find they had all left clinic and gone .All I had was the receptionist hand me a bundle of forms for stool samples,FISH genetics test (whatever that is...all it said was ?autistic spectrum disorder ??) and RAST test??? for milk protein,wheat,and some others which I cant remember. we got back from Sheffield at 5.20pm....to an answerphone message from our local Dietician to say she had a phonecall from Sheffield and if we got back before 5pm then to phone her straight away if not them she wasnt back till next Tuesday afternoon. so what we gained from that visit was absolutely nothing and I still have a child who is now so poorly that school is out of the question...........they even saw him have an attack of the runs while he was there,screaming,crying and walking like he had been riding a horse all day,legs apart as he had poo running down his leg.I find it unbelievable to say the least! Problem was that the reg himself admitted that Samuel and seri were way beyond his expertise but Gastro just want available to speak to us.Registrar said that he would speak to gastro and that Gastro would probably come and speak to us....but he didnt. Seri was pretty short and sweet.Apparently Gastrostomy feeding is out of the question at the moment as she is still not back up to correct weight and has been too poorly of late.Surgeon seemed to think that there was a good chance that her stomach wont work well enough to ever accept stomach feeding.A skin and muscle biopsy was also suggested to us as a good idea now as she is having so many problems. Thats about it.Im feeling totally frustrated and fed up._________________

Apart from the frustration Seraphina had her 2nd Birthday.We got a banner from Birthdays and decorated her wheelchair both sides with happy Birthday.Bless her she thought it was great fun trying to rip it off as it made a nice crinkly sound when she touched it as it was made out of metallic paper.She had a Pepper Pig Birthday cake (though we had to pretend with the candles unlit because of her oxygen) and we also took a cake to Church on the Sunday to share with everyone,so many people have been praying for her over this last 12 months we wanted to share her birthay with them all.

she had some ovely presents including the most gorgeous T-shirt with a ballerina on from my friend Hazel which matched the skirt and ballerina tights we had bought her perfectly!

Will have to get round to posting a few more pictures on here so you can see the Birthday Girl

Sam and Seraphina op pictures

2008-12-01T09:07:00.000-08:00

Samuel on just neocate and no food....and Samuel immediately post op...not impressed.Look how much better he looked when not eating!really stuck me seeing these posts side by side hmmm... alas the healthy look didnt last longer than a couple of weeks,as soon as he starts to eat a little food we are back to losing weight and looking more like the post op pic :-(

Seraphina in PICU after 3rd Fundo 1st pic shows lovely arterial line in neck ugh!

oh boy what a day!

2008-11-26T09:18:00.001-08:00

Spent the morning in hospital this morning with Ser,having her eyes checked and (so i thought) being fitted for her glasses.
Well she had all her checks done and those nasty stingy drops put in her eyes and then went to see the big cheese consultant.She was lovely it has to be said and apologised that it wasnt better news....apparently Seri has a problem with the shape of her eyes and also the development at the back of the left eye.She HAS lost some of her left field of vision (as we had been told previoulsy) and her sight isnt brilliant..she explained it like this (showing me one of those eye test charts you normally see in thenopticians with the letters on) Seri's sight is like she can read only the top two lines on the chart.
HOWEVER,she is also showing signs that suggest that neurologically she hasnt the potential for better eye sight because of damamge sustained to the visual centre of the brain,in which case glasses would do nothing.So she is sending her to Birmingham Childrens hospital (was going to be Moorfields in London but she said Birmingham have started doing the same test) for electrodiagnostic testing which will basically look at the brains visual response and see what state its in.When we get those results ,which will be about 2-3 months,then she said we will have a better idea.she said that if she's proved wrong and she does have potential for better vision then they will '' pull the stops out'' and see what surgical options there are and what can be done with glasses.

came out feeling a bit crushed to be honest,always seems to be bad news. Arrived home to find a big envelope from the EPICURE study Seri was registered on...they are researching outcomes of extremely premature babies born in 2006.Seri's 'lovely'(in the same way a severe gastric bug is lovely) neonatologist was taking part on the study team.They sent a huge questionaire to fill in with such things like ticking all the different words she could say....hmmm that wouldnt take long and how well she's walking etc etc and then were 'inviting' her for a full medical and assessment which would be videoed...................................needless to say I phoned them up and very politely declined this amazing opportunity (Im sure you can detect the sarcasm lol!)

well tomorrow is my princess's birthday and we are in Sheffield Childrens hospital all day for the latest on Seri and also Samuels biopsy results.Lets hope theres SOME good news tomorrow!!!

Had to post this

2008-11-18T08:21:00.000-08:00

I am the Child

I am the Child who cannot talk.
You often pity me,I see it in your eyes.
You wonder how much I am aware of - I see that as well,
I am aware of much - whether you are happy,sad or fearful,
patient or unpatient,full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration,knowing mine to be far greater,
for I cannot express myself or my needs as you do.

You cannot conceive my isolation,so complete it is at times.
I do not gift you with clever conversation,
cute remarks to be laughed over and repeated.
I do not giveyou answers to your everyday questions,responses over my well-being,sharing
my needs or comments about the world about me.
I do not give you rewards as defined by the worlds standards -
great strides in development that you can credit yourself.
I do not give understanding as you know it.

What I give you is so much more valuable - I give you instead opportunities.
Opportunities to discover the depth of your character,not mine;
the depth of your love,your commitment,your patience,your abilities;
the opportunity to explore your spirit more deeply that you imagined possible.
I drive you further than you would ever go on your own,
working harder,seeking answers to your many questions with no answers.
I am the child who cannot talk.

I am the child who cannot walk
The world seems to pass me by.
You see the longing in my eyes to get out of this chair,
to run and play like other children.
There is much you take for granted.
I want the toys on the shelf,I need to go to the bathroom,oh,Ive dropped my fork again.
I am dependant on you in these ways.
My gift to you is to make you aware of your great fortune,
Your healthy back and legs,your ability to do for yourself.
Sometimes people appear not to notice me;I always notice them.
I feel not so much envy as desire,desire to stand upright,
to put one foot in front of the other,to be independant.
I give you awareness.
I am the child who cannot walk.

I am the child who is mentally impared
I dont learn easily,If you judge me by the worlds measuring stick.
What I do know is infinite joy in simple things.
I am not burdened as you are with thestrifes and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean,
to give you love.
I give you the gift of simplicity.
I am the child who is mentally impared.

I am the disabled child.
I am your Teacher
If you will allow me,I will teach you what is really important in life.
I will give you and teach you unconditional love.
I give you with my innocent trust,my dependancy upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.

someone posted this through my letterbox and I had to share it with you as meant a lot to me.It is so true,how a disabled child completely re-defines your life and who you are.having a disabled child is such hard work and at the same time such a rich and beautiful blessing.

forgot to say...

2008-11-08T10:48:00.000-08:00

........Seraphina is next in Sheffield to see the surgeon and Gastro on 27th November along with samuel who gets the results of his biopsies...its her birthday,what a way to spend it.Cant believe our little cherub will be 2!!
We are going to try and transfer some of her care nearer to home now as it takes us 2-3 hours to get to sheffield from the midlands depending on traffic.Neurology is being transferred to Birmingham Childrens as thats the nearest tertiary centre to us.Hope they are good there as I havent had much experience with Birmingham and wouldnt touch Leicester Royal or their PICU with a barge pole!(makes me shudder to think of it after Seri's disgusting experience there when he was 4 months old - I still think they are to blame for some of Seri's neuro damage!)

Anyway the next appt is in University Hospital Coventry to be fitted for glasses on the 26th........hope they do pink ones :-D

where we are now

2008-11-08T02:04:00.000-08:00

Just realised its been a few weeks since I updated Seri's blog....so much has happened.

Ok firstly she had her 3rd Fundoplication.Heres an 'update post' from another site that I posted when she came out

Seraphinas surgery took longer this time than expected because her liver and stomach were stuck together and the surgeon had to separate them so what I was told would only take 3 hours actually took 5...I was getting quite worried in the end wondering what had happened. Anyway she went to PICU (paediatric intensive care unit) in the end with arterial line,cannula,jugular line and picc line plus ordinary cannula in her foot want realy prepared for all those needles but fine when they explained them.It was hard going back to a picu after the time when she was so poorly and ventliated and I must admit it did freak me out, walking in there bought it al back. They were brilliant in there though and really looked after her.She had to have a catheter fitted as she wasnt weeing but they said that could be down to the anaesthetic and morphine drip.She needed morphine for 4 days in the end ,along with diclofenac,paracetamol and diazepam as she was really feeling the pain this time round but is now just having paracetamol. We are on antibiotics for a staph aureus infection in her Gastrostomy and one of her incision sites opened up again but they seem to be doing the trick..they gave them IV first to get them into her system. To start with she wouldnt tolerate her feed and so they rested her ut for 3 day in the end but shes now on 45 mls per hour so only another 20mls to go to get to her usual 65mls per hour. The only other hiccup was one day when she decided she just didnt want to breathe she kept having apnoeas and her respiration rate was 10 ...so they wanted to take her back to PICU to keep an eye on her as she was doing this even on 1.5 litres of oxygen.Thankfully by the afternoon whatever it was had passed and she was breathing better. she did have some fun whilst being in there though....as shes lost weight and also grown taller and stretched out her splints dont fit any more so the man came to re-plaster her legs for new ones.....and Seraphina tried to 'help' him ROFL..by the end of the procedure there was plaster of paris everywhere!!! even her feeding tubes were plastered lol.Dont think hed been helped that way before...good job he was fairly easy going,the room looked like a bomb site! They will be ready to pick up on 27th October when Sam has his surgery so we will get them then...they are bright yellow this time and going to try and get some stickers to go on them. I will take a pic when she has them Anyway thats about it, shes home (still refluxes but minimal) and just got to build her up a bit now and get rid of her infection .

Then unfortunately she came down with a gastro bug which really knocked her back.Poor sausage.meanwhile Samuel (her 4yr ols brother and felow refluxer lol) went in hospital to have colonoscopy,endoscopy and PH run done.Got back from that and poor Seri had come down with a pneumonia so ended up last Saturday morning taking her to the hospital.They put her on two different lots of antibiotics which shenhas just finished.Still not back to her old self though.

She got weighed yesterday.....and has lost 10lb in weight!!!!(12lb in total if you count the but she lost before fundo).Was quite shocked...so was the dietician.Sheffield have been informed and the dietician phoned me and we are to feed her continuously now over 24 hours and hopefully she will maintain her weight(or even better put weight on!).The only concern they said is that feeding continuously has an effect on liver function ,but they are going to look into it and let me know next week what the effects are likely to be.

the other thing that has been mentioned by nurses/dietician etc is Seri going into a hospice now for weekends :-(.I know its probably the wrong impression but I associate hospices with dying kids and it just made me shiver at the thought.I have told them i wouldnt consider it at the moment. I KNOW we are knackered...exhausted even (this is the 5th week sleeping on the floor downstairs) but at the end of the day its not Seri's fault shes disabled and requires so much care so why should she be sent away.The nurse has also asked if we know of anyone medically trained who could give us a couple of hours respite in the home every now and again....I dont know of anyone though.Might ask at Church but dont think there are any nurses and thats who it would have to be because of her feeding tubes and suction machine etc.

Well better go and run my sweetheart a bath...have been to lush and bought her some 'ickle baby angel' bath ballistics so she can have a lovely lavender bath as Daddy is home so we can bath her between us and then be moisturised with Lush dream cream.Sure she'll enjoy that!

Heres a pic of her in her wheelchair before she got poorly

well its time..

2008-10-08T09:14:00.000-07:00

have just started packing ready to leave for Sheffield tomorrow morning...my little sweetheart is on the afternoon list for surgery.They are going to re-do her fundoplication for the third time in 12 months.
Its funny,this will be her 8th surgery in total and it doesnt get any easier at all,Im more aprehensive this time I guess because so much hangs in the balance,I know that its more risky this time round because she has scar tissue from the previous ops but also, shes been through so much already and she NEVER reacts well to surgery,it always knocks her back a lot.They've not siad how long she'll be in for this time...dont think they dare as the last time was meant to be a couple of days and instead turned into 4 weeks!
If anyone does read this,I just want you to know how wonderful and brave my little fighter is,how she overcomes every obsticle thats put in her way,how truly amazing she is....
......... Seraphina,my darling,I hope one day you will read this and know how much your Mummy loves you and how damn proud she is of you,you are truly my little miracle xxx

well I better get on with packing our stuff up ready to go as we have an early start...I hope my next post will say what a success the Op has been this time.

stop the world!!

2008-10-03T04:06:00.000-07:00

Just had a phonecall from the community nurse.Shes trying to get things organised.Because Seraphina has so many professionals involved shes trying to get her a key worker.She said that Seraphina may not do as well as we hope and we need to be prepared for that,then was talking about another OT referral,IDS etc etc....BUT I DONT FEEL READY FOR THIS!!!.I DONT WANT TO THINK ABOUT HER NOT DOING WELL!!!
I came off the phone shaking and just wanted to cry.I just want all of this to be a bad dream.

so many mixed feelings

2008-09-29T10:08:00.000-07:00

Its been a tough day today,didnt start out well I suppose because I was up from 1am...for a change it wasnt with Seraphina.On the contrary it was me...horrible vivid flashbacks of her traumatic birth,then the ventilation at 4 months,seeing her turn deep blue and rescusitating her...just loads of images that wouldnt go away,like I was replaying it all in my mind all over again. Made me feel so totally sick.I know why this has started again...its aways the same before she has surgery...Im not as bad as I used to be though,it used to be that every time I heard a siren and saw an ambulance with lights flashing I would just go cold and want to cry.Now its not so much.

Anyway then out of the blue I had a phonecall from the neurology specialist who has agreed to take over as Seri's local consultant.She had her notes in front of her and we had a long chat about the fact that I had a long list of symptoms but no diagnosis for Seri.She then went on to explain (very nicely) that Seraphina had Cerebral Palsy but generally neurologists dont like using that term as its so broad and so instead just deal with the separate conditions such as stiffness, developmental delay etc etc.
I have to say that during this conversation I felt physically faint,like I was going to pass out.I think it was just that on the one hand you have your suspicions but when someone actually confirms them then it suddenly seems so 'real' in a wierd kind of way.
Literally 5 mins after that conversation the speech and Language therapist and the Community Nurse turned up.........that was the most surreal thing,just having these appointments and chatting about possible extensions to the house to accomodate a downstairs bedroom and bathroom and that Seri may need a hoist eventually.I could hear myself speaking but as if from a distance,like an onlooker instead of a participant.freaky.

I still dont think its sunk in,I know it hasnt I suddenly have a thousand questions.....WILL she walk,talk even eat like other people?.Will she be able to look after herself? Ultimately only time will tell I guess but i so feel the need to know NOW, at least that she'll do ok.

and ultimately WHAT IF Id managed to keep her inside a little longer?,what if my body had done what it was supposed to?...................................I feel I have let her down.

A light at the end of the tunnel!

2008-09-24T10:09:00.000-07:00

Well Seraphina has lost another half kilo and Phoned Sheffield to let them know...later that day I had a phone call to say her Op had been moved onto the emergency list and was going to be on the 9th October!!! so only two weeks to wait :-).Im counting down the days now as its all turning into a bit of a slog.David (bless him) slept downstairs with her last night as she was REALLY unsettled and to be honest al shes done today is cry again :-( cant be much fun for her and she sounds like her throat is getting really sore again.
I so hope that the Op works this time,Im not even letting myself think about the possibility that it doesnt.
So a good positive step forward,now all we have to do is hope she doesnt lose too much weight in the meantime and keep her away from any bugs.

Yawn!

2008-09-22T08:55:00.000-07:00

Another night with only 2 hours sleep....am starting to need shares in Red bull!!
Last nights entertainment was provided by Seraphina-no sleep and Samuel who is intollerant to dairy and wheat and was found with his head in a box of Weeto's this equalled lots of tummy ache and runny nappies of the sort that require a plastic carrier bag to stop them dripping on the stairs on the way down.....sorry if TMI just needed you to feel ma' pain LOL!

Phoned Sheffiled today as requested and let them know she'd lost another half kilo this week :-( Nurses said if she keeps this up she'll classify as failure to thrive!).
No-ones phoned back yet today but i guess the surgeon could have been in clinic /surgery all day,who knows.
I REALLY hope someone moves her date for surgery forward soon as I dont know how much more of this I can take.............sooooooo tired

Time is running out..

2008-09-19T02:05:00.001-07:00

5pm

Its been a stressful afternoon.The dieticians are not happy with Seraphina and told me to phone Sheffield before they did.Seraphina should be having as a minimum 1200 kcal per day but at the moment she is only able to tolerate 700.She should also be having her feed pump running at 65ml per hour.....shes only managing 50mls over 18 hours and is still being sick and dumping.I have lost count of the amount of nappies she has had today...she has just started back on 5 antibiotics too and so there is poo everywhere (well it feels like it!).So its highly likely that she will still be losing weight and if this continues she will get dehydrated fairly quickly.

I have phoned Sheffield,whose Theatre lists are jam packed apart from a possible space on the 9th October (but the parents havent decided aboout whether to proceed with surgery or not yet).The sec told me that Mr Marven is aware of how Seri is and will try and move it forward.She also told me that she wants a recent weight of Seri....shes lost 1.5kilos so far and she was last weighed 2 weeks ago.If she has lost weight again....which is quite likely,then the Secretary thinks they will probably end up taking her in and doing the fundo as an emergency.

What a horrible situation to be in :-( I just hope they manage to get her in soon BEFORE she gets too poorly...I dont want her to have to have a femoral line in again just to hydrate her.
I just feel like the clock is ticking and if something doesnt happen soon then she is going to be one poorly girl.

Hmmmm

2008-09-19T02:05:00.000-07:00

Well,have just had a phonecall from RMS who are ordering her 'New Bug' wheelchair system.They gave me the quotation for total cost and asked for 50% deposit.I paid them and then said i qwould give them the date that I needed the buggy for (next trip to Sheffield)....is actually the 26th but I didnt want to leave it too late so said 24th October.The Rep had previously said that it wouldnt be a problem......well apparently this lady has just told me that they come from Italy and are taking a good 8 weeks to arrive!!!!!grrrrrrr!
I did politely explain that a condition of the sale WAS that i get it by 24th which is why I had checked and double checked.Anyway we left it that she would do her best to get it quickly and if there was going to be any delay then she would let us know.
I really hope they can get it to us in time....I REALLY dont want her to be having her fundo done again and then have to slump in the curent pushchair as its going to be SOOOO painful for her,she needs the support and I dont want her to be in any more unneccesary pain.

Have just had our feeding supplies delivered and once again we have no correct Jejunostomy button.....well no button at all although the delivery note says it should be there!Can you tell im not surprised....we seem to be having so many problems with these buttons and the delivery people at the moment its untrue.
Well I suppose I ought to make a start on the mammoth ironing pile which seems to have bred overnight....Seraphina is asleep,she seems to have developed a habit of thinking that 5.30am is time to get up which,after being up in the night as well means she needs a nap by 9am.Wish i could join her :-)

2008-09-18T11:22:00.000-07:00

My Sweetie pie

Just after Theatre

Her two new tubes

The femoral line which she had the late night dash to Theatre for...

and little minkey with two boxing gloves on to stop her puling the line out! :-)

2008-09-18T11:17:00.000-07:00

well the date for Seraphinas surgery is provisionally 19th November but the surgeon (and us would like to get it done sooner and so is going to try and re-jig his lists and call us in when he can.

Good news and bad news

2008-09-18T11:14:00.000-07:00

mixed day today really.....first the good news, after what seems like forever we have now,through people raising money for us,got the £2300 needed to fund Seraphinas wheelchair....we had a recommendation for it from the regional posture and mobility centre who asessed her and saw that she still cant sit on her own and what they discribe as 'low tone', but the Local wheelchair clinic wouldnt pay for it!. Anyway the Rep came out today and it is ordered!!!!! so should be with us in 4 weeks and on the more worrying side.... Seraphina has been developing more and more of a squint over the last 6-12 months and went for a review today at hospital.Apparently her test results show that its likely she has damage to the right visual side of the brain and has lost some of her left field of vision.They also think she is extremely short sighted and commented that she seems to hold her head to one side when looking at something...apparently this can be a way of them compensating for loss of vision field PLUS they think there might be some damage left over from when she had retinopathy . They want her to see a consultant and go to London (somewhere called Moorlands) for an EDT.....apparently it measures the brains response to visual stimulus.They said it would fit in with a diagnosis of Cerebral palsy (the whole Hemi thing again)....they want this to happene next 4 weeks they said 'in order to try and preserve as much of her vision as possible!!!!!' .NOT at all what I was expecting to happen today so it looks like we have another hurdle to overcome now.

2008-09-18T11:12:00.000-07:00

yay yay and double yay!!!!!!! the money for Seraphinas wheelchair has all been raised!!!!!! £2300 ready for her.Have contacted the sales rep at RMS and he is coming out on Wednesday :-)
cant believe we've finally got there

2008-09-18T10:45:00.000-07:00

Well I have finally got round to posting on a proper 'Blog' for Seraphina.I have transferred all her old diary posts her and hope to keep up a regular record,both for darling Seri to look back on and also for all those people who have followed her story from the begining,supported us along the way eg Claires and her friends on Eurobabes (no I havent forgotten your kindness),march club girls,sweet Hazel (love ya!),Vickie,all on LWR,my lifeline!,Penny and Nicci and my friends at MCBC and more recently Ailbhe and Rob.

We have finally come home again after another lengthier than expected stay...Seri had 3 of her salivery glands clipped off and her Jejunostomy tube replaced for a jej button.She is still 100% pump fed as she cannot swallow properly and unfortunately despite 2 fundoplications is STILL sick and aspirates.

After a lengthy chat with her surgeon it has been decided not to go for the Oesogastric separation op yet but instead do the fundoplication again for a 3rd time.we know that this is not without its risks but we feel we owe it to little Seri to give her another chance...it might work this time,who knows.

She has been wearing splints and Gaiters on her legs to try and get her to stand properly with her heels on the floor but its not having too much success at the moment.her spasms however are pretty well controlled with Baclofen (a muscle relaxant).The next step is a stander and gait trainer to try and help her balance.

2008-09-18T10:43:00.000-07:00

22 December 2007
Just had to add this one final picture for now.Its of my litte sweetie as an angel and done by a company called www.enhance-me.com.Brilliant!

2008-09-18T10:42:00.000-07:00

22 December 2007
and one of you in your special sleepform bed

2008-09-18T10:40:00.000-07:00

22 December 2007
So...the latest on you is that you are on4 medications to control your reflux,one for gut motility,you wear patches of medicine behind you ears which need changing every 3 days...this reduces the saliva production as you aspirate and choke on your own saliva and you have been started on a muscle relaxant to stop your muscles going into spasm.You have something called Hemisyndrome and the Neurology team say you will go on to get label of full Cerebral palsy and not just hemiplegia.You also have started to have fits.The doctors dont fully understand why you are so oxygen dependant although your EEG shows abnormalities between the left and right side of the brain. Clinical Genetics think you may have some sort of rare syndrome and we have to go back to get the results of this after christmas.You do have your special chair now and so you can finally sit up and play.Unfortunately they have said they can fund you special pushchair which is SOOOO disappointing as you have most of your life threatening events whist in there as you cant sit up.We are fighting to try and raise the £3000 neede to get it for you.I pray that we will manage to do it before too long.This is you in your special chair...sorry its sideways LOL

2008-09-18T10:39:00.001-07:00

22 December 2007
You have had 2 surgeries up in Sheffield Childrens to try and cure your nasty reflux..they were called fundoplications and they basically wrap the stomach around itself and create an artificial oesphageal spyncter ....you had one on the 13th Sept and you ended up in ICU after this one and one on the 19th Sept as it had not worked.In total 9.5 hours of surgery....and the result,it failed too :-(.You still have awful reflux and you are still having life threatening events where you choke and stop breathing.This is you after your first Op

2008-09-18T09:39:00.050-07:00

22 December 2007
Havent looked at this diary for sometime as my little Seraph has been in and out of hospitals ..as far away as Sheffield,which is now where we have to travel to on a regular basis to get her treatment done and see the many specialists involved in hr care...Looking back over this diary I can see how far you have come and also where there are gaps in entries because things were so traumatic at the time.Like back in March when you came out of special care....I had you home just 3 days before you stopped breathing for the first time and then another 2 weeks before that dreadful morning when you stopped 3 times in my arms one after another which lead to you boing taken first to our local hospital ,then university hospital by ambulance transfer and then I watched as you needed repeated rescusitation until they finally decided that you would be better off on a ventilator.My heart nearly broke but I knew I had to keep it together for you and so I asked not to be separated from you and they let me gown up and go down to theatre whilst they intubated you.It wasnt a nice thing to watch....they have to give you drugs to paralysed you and sedate you and so when they got to that point they asked me whether I wanted to give you a kiss goodbye before they did it and I looked into your eyes and wondered at that point if I would ever see you awake again.I told you that I loved you and wouldnt leave you whatever happened and you seemed to understand,then they gave you the drugs and put the tube down.Then you were transferred by patient recovery unit to Leicester Royal Infirmary intensivecare unit.Here you are in ICU

2008-09-18T09:39:00.049-07:00

21 November 2007
Pic taken at Babyworld meet today of my little sweetheart Seri xx almost 1 now hunny :-)

2008-09-18T09:39:00.048-07:00

22 July 2007
What do I say at the moment? That my heart breaks for you,that I cant bear the thought of ever being in this life without you?or that your little smile is the only thing that keeps me going...WHY cant the doctors give me some proper answers?The thought that you may not make it to your first birthday fills me with dreadand I think thats beyond anything I can bear!I HATE all these stupid tubes but know thats whats keeping you alive.How i wish that you could feed from a bottle and breathe without oxygen and all the paraphanalia that comes with it.I just want my little Seri to be 'normal',want to be able to pick you up and walk around with you,put you in your sling without worrying about where your connectors will go or how much oxygen is in your cylinders!We named a star after you today..Seraphina star is in the constalation of Pegasus (front left foot LOL!),got the location and everything so I can see your star shining on me every night :-).Your dedication is provisionally booked for the 26th August,just hoping you are not in hospital again,but thats impossible to predict I know.You dont know how much I wish i had been able to keep you in for longer and how much I blame myself for all this suffering you are going through.All I can say is Im so SO sorry darling and if there was anything i could do to alter this then I would.I just feel so helpless ....I dont think I can go on living if you arent there with me ,hang on sweetheart.I pray the doctors will have some briliant idea about how to put you right.I love you SOOOO much darling one.Mummy

2008-09-18T09:39:00.047-07:00

17 July 2007
Tonight I just want to say I love you sweetheart.I love the way you fight when things are tough.I love the way that even when you are poorly in hospital.you always have a smile for me.Keep fighting darling.

2008-09-18T09:39:00.046-07:00

5 June 2007
well we are heading for another two hospital stays now.Walsgrave this week and Birmingham childrens next week.Things arent looking so good at the moment and now you have pulled out your Nasojujenal tube things are even more complicated!You are trialing NG feeds at the moment and its so hard to see you struggling and in pain.I do so hope that these new doctors can sort you out..or even just make you more comfortable.

2008-09-18T09:39:00.045-07:00

29 May 2007
Just wanted to say how much I love my little cherub.You are 6 months old now (exact day was Sunday...Pentecost)Went to Church on Sunday and prayed that God would bless you especailly this Pentecost and that he would stay as close to you as He has done so far,bringing you through this last 6 months.I still wish that you could see me but that along with everything else is in Gods hands.I just feel so blessed to have you and love just holding you and snuggling you close.

2008-09-18T09:39:00.044-07:00

22 May 2007
...and one of you with your littlest 'big'brother Samuel :-)

2008-09-18T09:39:00.043-07:00

22 May 2007
Heres one of you wearing a dress for the first time,yesterday!

2008-09-18T09:39:00.042-07:00

22 May 2007
Heres a picture of you in your crib on your first night home again

2008-09-18T09:39:00.041-07:00

22 May 2007
thought Id add some pictures of my little cherub now shes home with us again.Cant believe how much she has gone through already.Well sweetie ,you are now NJ fed through a pump 22 hours a day and have your medicines through an NG tube.Its quite a full time job,but you are so worth it.You have just started smiling and it is the most gorgeous smile that makes my heart melt.You cannot really see much,only light and dark ,but you love hearing the sound of your mummy's voice xxx.At the moment you have so many problems and the doctors think that maybe your brain isnt working like it should so you need to go to a special hospital so they can try and find out what exactly is wrong and help you,dont worry though as Mummy will be with you all the time.well here is a picture of all your equipment that you have by your little crib

2008-09-18T09:39:00.040-07:00

6 May 2007
heres another picture of you with a special teddy that Carla sent you.You werent very happy yesterday as when we aspirated your NG tube you had lots of blood there.They have increased your Omeprazole and hopefully that should make things better your PH was 1.5 which is very low so it looks like the acid had made your tummy bleed.

2008-09-18T09:39:00.039-07:00

6 May 2007
cant believe how much has happened recently.We so very nearly lost you due to bad reflux causing chest infections,bradycardia and apnoeas.Lost count how many times you were rescusitated.In the end you had to be intubated and spent 8 days on a ventilator and other things as your kidneys stopped working properly and you were all swollen up with fluid.You are now breathing on your own but your EEG results say your brain isnt working properly so you have had more bloods taken and we have to wait up to 4 weeks for the results!.Mummy and Daddy have been learning how to NJ feed you with a feed pump.YOu also have an NG tube for medicines as you cant have anything orally now as its too dangerous.I wish you were home with me...I miss you so much and I miss you looking 'normal'without all the tubes.We only get to see your little face properly when we change the tapes,its sad

2008-09-18T09:39:00.038-07:00

5 April 2007
Finally another picture of my little cherub at home.She has had a rough few days which ended up with me taking her to the doctors this afternoon.He has prescribed suppositories for her as she wasnt going poo even with lactulose.We are trying a hypoallergenic formula too to see if that settles her down as she is really colicky,constipated and reflux is bad...photo taken just after she filled her nappy....is that a smile of relief LOLOL!

2008-09-18T09:39:00.037-07:00

14 March 2007
O my,Dh has just come back from special care and LOOK!!!!!!!.I cant believe it....NO TUBES!!!! I jsut cant believe it.I didnt expect to see this for a while yet...they were saying she was going to come home on Oxygen!...WOW!.Hope she manages to stay like this but Oh isnt she GORGEOUS!!!!!!!!!

2008-09-18T09:39:00.036-07:00

14 March 2007
Well so far so good.She is back on nasal cannulas now and seems to be coping.She has also been moved out of intensive care YAY!.Saw the speech and lang therapist yeaterday who confirmed basically what I knew already... that she has a weak suck and hasnt got a good suck breathe swallow reflex at all ,hense her aspirating on feeds etc.She also saw her desat continually after to feed which she also attributed to reflux.Apparently the on duty consultant is going to speak to Seris consultant about starting her on Domperidone and ranitidine for the reflux.They also talked to me about her coming home on Oxygen as this is looking more and more likely now.ROP wise she is still grade 2,so no worse there.As for me,well after spending 3 days on absolute agony with a headache which turned into a migraine I went back to the GP today and he has stopped the Maxalon tablets (headache now gone!) and started me on Domperidone to try and increase my milk supply.I took the first one this morning and at lunchtime I expressed 30mls!!! a big improvement to the 2.5mls-10mls I was getting :-) fel quite happy about that.Doc has given me a 2 weeks supply and said that if they work he is quite happy to give me more.Heres hoping the increase continues as I would really like to keep my milk going a bit longer.Have been really stressed about Vaccinations after I found out what was in them.DH and I are going to have a chat tonight about what to do.Its so hard to know what to do for the best as I dont thing either choice is great.At the moment my instinct is to wait now until she is 4 months corrected age before giving her the last set.Def woulsnt give them in 2 weeks time which is when she is due.The life of a parent is not an easy one!Well I better go....its really sunny outside and my Ellas house pink girly hemp nappies have come and time to hang them out on the line!! hee hee.I really must get a life...fancy being cheered by the sight of freshly washed nappies blowing in the breeze LOL!

2008-09-18T09:39:00.035-07:00

10 March 2007
Well the last few days have been hell on earth quite honestly.Seraphina deteriorated fast with this nasty MRSA bug and then it was found that she also had bronchiolitis and pneumonia bug.It was so horrible watching her struggling to breathe and coughing so much she was completely winded and went blue,desatting down to 19%.she then started having bad apnoeas and when the Consultant cme to see her he said that she needed to be re ventilated and to withdraw feedings and give TPN as whatever she was being given she was vomiting back.She was requiring suctioning out as well which the poor darling didnt like but she was producing SOOO much mucus it was unbelievable.When she breathed she sounded (and still does) like a bowl of rice crispies as she was crackling and wheezing so much.she sat on my lap for a cuddle and then just turned puce and her little eyes were bulging as she couldnt clear her airways.I have virtually lived at the hospital not daring to move as they werent sure that she would pull through this time as she had so many bugs to fight AND unfortunately she had been given her second lot of imms literally just before she came down with this bug.Today was the first day that they could say to me she had 'officially' been recognised as stable, on CPAP thankfully now.she is still looking very poorly and washed out and I know that we are by no means out of the woods yet,but we have cause to hope...something which we didnt have a couple of days ago.she is also tolerating very small amounts of feeds every 2 hours.I have also started expressing milk for her again after a 2 week break..this was becaue even though she hadnt had anything but bottles for quite some time now (albeit with EBM in)when she had her last cuddle before being reventilated,she tried to latch on to my T-shirt!.The nurse asked if I would like to put her next to my bare breast for comfort and she actually did try and latch on to me and suck,bless her! That told me that she when she was so poorly she wanted to comfort of being close to her mummy and she was trying SOO hard to look at me,like she was trying to tell me that thats what she wanted.Well after that I started leaking bits of milk again and started to express again today...only getting v.small amounts but every little helps and I am taking Fenugreek capsules and fennel tea to try and build up my supply again (if anyone out there knows of any other tips I am open to any info I can get LOL!).I guess at the end of the day I felt a bit pushed into giving up any way and it just goes against all my natural instincts as a parent.As long as there is milk there she can have it.Well its little Seris due date today...we had a little Party for her and took in biscuits for the staff.They were really nice and congratulated me and her for getting to her due date :-)....15 weeks old and just reaching her due date LOL! sounds really odd...and WHAT a 15 weeks!!.Think the staff are all amazed that she has survived so far as she has had an absolute hellish ride.They were contemplating yesterday ligating her PDA and ASD anyway but didnt think she could withstand the Op thankfully she has stabilised without them doing that so far but they have said she now has 'loud abnormal heart sounds' whatever that means...cant really think too far ahead now as I'll drive myself mad with worry.Just taking one day at a time and praying that she will grow stronger.Thanks to everyones good wishes and especial thanks to sweet Vickimother off my antenatal club for keeping everyone informed for me xxx

2008-09-18T09:39:00.034-07:00

9 March 2007
1amJust phoned the hospital and they have done bloods and put in a cannula.They are also reducing fluids as she is puffing up and they think she her heart may be failing due to the holes she has in her heart.They said they will get the blood results in an hour or so and take it from there.

2008-09-18T09:39:00.033-07:00

9 March 2007
Dont really know what to say,its 12.45am and I have just come back from the hospital where I have been all day.Have had to come back for a break and to keep going for the others but I feel wide awake.Seraphina is SOOO poorly.When I left she had just had another chest xray and she was just about to have bloods done.She just keeps desatting down to 30-40% and even as low as 19%,several times a minute.At the moment they dont know whats causing it and she has this horrendous cough as well.She hasnt been able to sleep all day as she cant get comfortable and even when she does close her eyes she starts another bad coughing episode which wakes her up again.She looks totally fed up and worn out and with each hour that passes she is getting visibly weaker.I feel so helpless tonight.She has fought so hard for so long,please God dont let her go now.

2008-09-18T09:39:00.032-07:00

7 March 2007
Yesterday was Seraphinas 100th day birthday at SCBU.She had a 'birthday' card and a Certificate from the staff andwe bought her a big heart shaped helium balloon with 100 days written on it and also a pink sash with princess written on in gold which she had on her cot.Unfortunately she got ver poorly VERY quickly yesterday and we had a phonecall from scbu to say that she had had to go back in an incubator as she was struggling to breathe...I thought it might be bronchiolitis and asked them but they took swabs and it came back as MRSA :-(I have just been in this afternoon and she has been taken back into intensive care as she is very unstable.When i had just arrived she desatted down to 19%!!!I thoughtshe was going to die as she lay there all grey and looked like a dead baby,no colour ,no movement no nothing *sob*.I will be going in this evening to sit with her as will DH.My poor baby seems to go from one crisis to the next and I wonder if I will ever get her home

2008-09-18T09:39:00.031-07:00

2 March 2007
Seraphina having her first bath!

2008-09-18T09:39:00.030-07:00

28 February 2007
Well this morning was really good (despite me stressing all night and feeling sick at the thought of this meeting LOL!).Glad that I had Helen Pope as the Nurse in the meeting as she is much more organised than some of the others and gets things noted down etc.Basically the plan now is to introduce Nutriprem 2 to her feeds,so one EBM and one Nutriprem until my stocks run out.then she will be formula fed.They are FINALLY going to get a barium swallow done YAY!!! so mylittle sweetheart can have her reflux treated.The plan is to do the barium and then start her on Domperidone and Ranitidine (phew! what a relief that will be!).I will be glad when thats done as i was so scared of having to go through what I did with Samuel all over again...desats,mouth to mouth etc*shudder*.ROP seems no real change so they are going to keep reviewing every week.Heart...well the plan is to sit on it and see what happens.They can operate if they need to but TBH she isnt too bad at the moment.I think her main problem is the reflux.They are going to try and wean her off the oxygen now but are aware that a) it might not work and so she would need to come home on oxygen and B)she would still need oxygen for feeds.Just a case of waiting and seeing on that one.They have also decided to get the speech and language therapist to come in (Jane Sudden)as she has a very unco-ordinated suck/swallow/breathe reflex so that is not helping her feed.Last night she desatted down to 20%!!.On a good note they have said that she can have a bath!!! so they want to arrange a time with David and myself to come in and bath her :-)one to film I think!!shes going to ahve her next lot of imms either this week or next too,cant believe shes 3 months old already!Oh and she is now relatively non puffy and weighs 6lb 1.5oz!!!! what a whopper.She is starting to look more and more like little Eve now,think shes probably going to have the same attitude LOL!Brain scans have also shown nothing of real concern,there is no guarantee as she is still at risk at 25 weeks of Cerabal palsy learning difficulties etc so once again just wait and see.Helen also got me a print out of what she has written from this meeting with the consultant so that I can refer to it.All in all pretty good and feel much more aware of whats going on and cvlear what the next steps are.Keep fighting my little angel...mummy is SO proud of you!!

2008-09-18T09:39:00.029-07:00

27 February 2007
Well you are 3 moths old today and still no nearer to coming home.Milk has now dried up after 3 months,you didnt manage to breastfeed and are having difficulty sucking from a bottle.I miss you so much it hurts and I wish you were home with me now,its been too long already.

2008-09-18T09:39:00.028-07:00

19 February 2007
more recent picture of my little cherub!

2008-09-18T09:39:00.027-07:00

19 February 2007
Heres a picture of my darling babys crib.It has her name embriodered on the covers.you'll have to excuse the half decorated bedroon though LOL!