Today

Today I feel angry at the world.
 I want to shout and throw my toys out of the pram and scream ''Its not fair!'
I know it wont help.I know its incredibly immature, but I want to do it anyway.
Think this has been brewing for a while..

Today has not been a good day for Seraphina. She had been up since 2am...but didnt seem to be anything particularly wrong..she was a bit wriggly but nothing more.
At 8 am however when I lifted her and put her down to change her she wouldnt put her legs down..they were curled up to her tummy and she was clearly uncomfortable. I passed it off as wind or something.
By 11 am she was in agony, I flushed her TPN of and tried to get her to stand on the floor as she loves being out..she was doubled over and holding her tummy with a pathetic desperate look on her face.
I wondered if it could possibly be a urine infection and took her temp...it was elevated.
I put a U-bag on her and phoned the Community nurses just to let them know what was happening.

Suddenly the pain got worse...a lot worse.I gave her morphine but that didnt seem to cut it. I phoned the Nurses again and explained that she was gasping for breath and in a lot of pain...also that I had dipped her urine and it had tested negative for infection. She told me to go to hospital to get checked out and she would phone on ahead to let them know we were coming.

When we got there a nurse assessed her and could see she was very uncomfortable and offered us more pain relief for her which we had and then bless her, she fell asleep. she was utterly exhausted.
We then waited 2 hours to see a Dr who prodded her tummy said..hmm shes uncomfortable but not in too much pain now, take her home till the morphine wears off and then bring her back when the pain gets really bad.


Needless to say her community nurses were not impressed.

So here we are at home waiting...shes clearly starting to get rather uncomfortable again so I dont know what tonight will hold...but no one has a clue whats wrong.



A couple of weeks ago we went to Great Ormand street Hospital, Sheffield had sent her there to see if they could suggest some treatment.
We had been waiting 12 months for an appointment and hopes were high.
When we got to see them the consultant said Seraphina was exactly like another little girl with Rett Syndrome that they had treated. They want to admitt Seraphina for a series of tests on her bowel before they definitely decide on a plan of treatment but suggested (as Sheffield have) that a colectomy and stoma may be the best course of treatment.
When they said they had dealt with another little girl I said 'Oh great so its fixable then!' to which they replied..'no, we didnt manage to fix the other little girl' she has had a stoma but she is still TPN fed.

At that point I felt like my world had crashed in again ( the first time being when she was diagnosed with Rett syndrome)...I hadnt even realised myself how much I had pinned my hopes on GOSH having some miraculous 'cure' that would 'fix' the horrible pain and issues my little darling is going through.
Still I triend to make positive 'oohs' and 'ahhs' when they explained the various tests they wanted to do including mannometry and full thickness biopsy to see if Rett had distroyed the nerve endings in hr bowel... all the time thinking  'I dont want her to have to go through any of this ' and fighing the urge to just pick her up and run...as if running away would somehow make it better.


Why???....

I dont understand any of this right now.

I know God exists

I know God loves her, so much more than me...


But...

I know that some people believe that if I had a strong Faith I should 'have it all together' all the time..

But...


 I dont...and right now I am struggling with all of this. I realise that some will probably judge me as lacking by saying this, Im not going to lie.

I know God could heal her. Ive been told many times by well meaning Christian friends...ones who I consider ''bigger Christians'' by far than me, that He will heal her...

But He hasn't yet.


Yes we have had improvements..she walks and that IS miraculous.particularly the way it happened.
We have had imrovements in her bowel...tantilising days even weeks where it all seemed to be going SO well...she even astounded her consultant..

and then it all comes crashing down and the pain, the sweating, the screaming and the bleeding re-occur.

I think the worst thing in the world has to be watching your beloved child suffer and being able to do nothing about it.

I have spent sleepless nights wondering if its my fault she hasnt been healed...if I could only have a little more faith...if its somehow a fault on my part for not ''believing' enough.

I dont know.

Maybe it is...

I dont get it..I seriously dont.

All I know is tonight my heart hurts SO much for my littlest daughter, my brave little warrior with a passion for Tinkerbell and Heidi Baker (  what a combination!,even typing that makes me smile ) and I wish I could make it better.She IS a miracle who desperately needs a miracle

So I'm spilling my heart on this page, I'm trusting that my heavenly Father is big enough to handle my struggle, my doubts and Im hanging on...

...I cant stop hoping


Blessed be the name of the Lord. I dont understand, but I love you and I will continue to trust you.

.

New strategies, new thinking & new wisdom

We had a pretty uneventful Summer holiday overall. Seraphina had a hospital admission in June/July with a line infection which involved her going to Theatre to have her Port a cath removed and a different type of I.V line (a broviac) put in. She was extremely sick at the time and it gave us a bit of a wake up call on how lethal Sepsis can be.
However she recovered and was home just in time for the school Summer holidays. Mostly we just enjoyed being together as a family but the highlight by far was spending a long weekend in August at Donna's Dream house in Blackpool.
The Dream House is a holiday home for life limited/terminally ill Children and it was totally a dream come true for all of us. There was a hot tub, Sauna, huge playroom, Teens chill out room and even its own Cinema complete with popcorn and sweets!! we also got given free tickets to Madam Tussauds (which Seraphina thought was extremely funny!?!), the Zoo and the Cafe on the corner for our evening meals. The kitchen was also well stocked with yummy food which we were free to use.
The only complaint that we had was that it went far too quickly!! :), it did us all good to just kick back and 'chillax' for the weekend...huge thanks goes to the wonderful Hanna McKearnen for nominating us and of course to the Dream house owner Len, who allowed us to visit!

Life with the Broviac has not been simple purely and simply for the reason that Seraphina will not leave it alone, at every opportunity she rips the dressing off it...the infection risk with her pulling it off every day is huge, and cleaning down an IV trolley and scrubbing up at 2 am is no laughing matter either!
Besides the day to day challenge of keeping Seraphina infection free we have had some added complications..strange and increased allergic reactions to things...from nappies ( again), to lots (and I mean lots) of different line dressings. she has come up in horrible blisters which hae broken down and started weeping and raw patches of skin. then to top it all off she came out in hives all over which didnt respond to antihistamines, she ended up on steroids in hospital to bring them down, which we then continued at home, but as soon as they stopped, althoguh the hives didnt return, this itching did...she scratched and scratched until she bled. After the Nurses saw how bad she was they spoke to Sheffield Childrens who put her on a high dose of IV Piriton twice a day which she is to stay on until she sees an immunologist to try and get to the bottom of the itching and reactions.
Seraph is also having bloating and bleeding in her bowel on and off, Sheffield have now made the decision that they cannot do anything more for her and referred her to Great Ormond Street Hospital in London for a second opinion. This is sad in one respect because it really does hammer home that she is really sick now but on the other hand we have heard so many good reports we are hopeful that the Consultant she has been referred to will have some good ideas/strategies for treatment of Seraphinas intestinal failure.

It is very easy to let all the 'horribleness' of Rett syndrome get me down..and yes it has and does from time to time,particularly when I am sleep deprived and grumpy...But then I look at Seraphina... she her bravery, her love of life.. see her as God sees her...perfect and beautiful and someone who God loves so much more than I do. Then I know that I cant 'give up', I just need to change my thinking.
I want to be a woman who sees beyond my natural situation regardless of how hopeless or desperate it may seem and looks into the supernatural realm with the eyes of Gods spirit.
There I see a God who loves and cares and heals. I see as a whole rather than focusing on this one.

                        '' For I know the plans I have for you '' declares the Lord ''plans to prosper
                          you and not to harm you,plans to give you a hope and a future '' Jeremiah 29:11

No matter how bad things look I know Gods plans are for good. My prayers for healing  for my little girl are what God wants too. How and what form that healing will take I dont know, whether it will be a new wisdom from the Drs point of view to see what the root of her gastro problems are whether it will be ''THE CURE'' for Rett that I and many other parents are hoping for or whether it will be a supernatural moving of the Holy Spirit which will miraculously heal her I dont know...ALL are equally possible with my God in control,with God you have to think outside of the box. Honestly  I'm not sure what the future will hold.

One thing I do know though... I have HOPE.

After 3 months,home at last

As the title suggests we are home after 3 months in hospital. Seraphina is now totally TPN fed ( for those who dont know what this is it is being fed through an artery into the heart ). Its a love- hate relationship as yes, she is 5 kilos heavier than she was when she was admitted BUT it puts a strain on her liver and will eventually damage it. At the moment though it is a neccessary evil as Seraphinas gut is now so fragile that she cannot even tolerate 5mls per hour of weak feed without it causing her extreme pain and diahorrea/ bleeding.
It was a tough three months for both of us Seraphina coped so so well with everything overall but thee were times when there were no smiles and her eyes told me the depth of her pain and tiredness.It was hard seeing her like this and being able to do nothing to help her. Sending her off to Theatre and sitting waiting doesnt get any easier.
Thankfully now she is home and although fragile and still needing pain relief to cope with the medicines going into her gut she is smiley and giggly again which is a real blessing.

And I have joined the exclusive 'TPN club' alongside other DIY nurses who manage I.V's, blood sugars,take bloods from lines etc etc.All those things that as a parent you never want to know how to do...I am SO thankful for two people who have helped me taking the first tentative steps into the realms of TPN and yet, who I have never met...Kim Hughes and Stephanie Nimmo (please see her inspiring blog www.suburbansuperwoman.blogspot.co.uk ).Both ladies are superwomen in my eyes and I really really hope one day to have the pleasure of meeting them.They have both been there to answer questions and Kim inparticular 'checks in' regularly to see how things are.If my arms could stretch through the computer screen I would hug you both...THANK YOU!

We have also had wonderful support from Postpals (www.postpals.co.uk ) who have been amazing in the lots and lots of ways they have cheered up Seraphina and her brothers and sisters and me too with such luxuries as furry blankets and chocolate.

Our Church has been wonderful, settingup a cooking rota and making sure my husband and children were fed twice a week to save David cooking. I had several visits from people from my Church including one lovely couple who I shared a DIY communion with in our hospital room - the best!

Another 'happening' and life changing moment for me was,just before we were discharged from hospital, the death of my father quite unexpectedly. Thanks to a couple from Church I was able to travel one evening from Sheffield to the hospitalwhere he was and back again ( it was a long night) to see him  and say goodbye. I played Matt Redman ''The Fathers Song'' to him from my Ipod and told him that God loved him and was waiting for him along with my Sister Catherine and my little angel boy Jesse.I prayed his heart accepted Jesus at the end, my spirit feels at peace about it, the God I know would have run to meet him broken as he was. He passed away within a minute or two of me leaving the ward, the Nurses phoned for me to come back but by the time I got back to his bedside it was too late.He died on 25th April. Thank you to Madeline and Dave for looking after Seraphina and doing the late night taxiing so that I could be there at the last.

I can honestly say I have felt Gods presence with me throughout this hospital stay,even when I didn't understand what was going on.I felt he was there with me.
One day inparticular when things werent looking good at all for Seraphina I cried out to God and said ''I know you are listening but today I need that extra reassurance....If you are with me and hearing me then show me.,prove it...give me something i can hold in my hands''

Later that morning the Chaplain called..his greeting to me was ''I was just passing and you both had been on my mind and so thought I would pop by and give you this..'' He placed a card in my hands and at the time I didnt pay much attention, we chatted and he left and then I looked at the card.. on the front it simply said ''I AM with you'' and inside a verse about God hearing our prayers...

God gave me something I could hold in my hands.

This has been a real comfort to me throughout everything that followed including my Dads death.
Little did I know when I left home back at the start of February that I wouldnt hear or see my Dad awake again. Already memories fade...I try and hear my Dads voice in my head, to recall the sound but I cant...strangely my Heavenly Fathers voice is much much clearer than my earthly one now..in some respects it has been for a while. How things change.

So another chapter is begining all round, Im praying we get to stay home for a while now, Seraphina is due to have her beloved Cherub, a Rag doll kitten, at the end of this month. we have had some fun buying bits and pieces to prepare for his arrival..its amazing how excited one can get about a cat litter lol
David and I are both signed off our TPN training and I can do bloods and access her port/put up extra IV fluids/blood sugars etc etc.Still havent got my Nursey certificate :0) but I guess its in the post.

Thanks to everyone who has texted/emailed loved and supported us through the last three months

                        ((((((((((((( HUG )))))))))))) 

Starting week 6

Thought I would do a little update as its been a while and so much has happened.
We are about to enter week 6 in 'the big brother house' called Sheffield Children's Hospital.
We have been to theatre twice, had numerous tests,bloods and drugs ranging from IV steroids to antibiotics.
So, where are we now?
Well,Seraphinas bowel has healed somewhat but is so fragile baggy and dismotile that it cannot tolerate full enteral feed again. the plan is to go home on home TPN ( Being fed via an artery into the heart) but ( if she can tolerate it ) a little weak enteral feed to try and protect her liver from the damaging side effects of TPN.
Seraphinas bowel has only two settings, STOP and GO. last time anything was put into her jejunostomy her bowel was in 'go' mode and subsequently what was put in came out pretty rapidly creating an impressive number of nappies and a lot of leaky mess.
now it seems it's set to 'STOP' .over the last 24 hours she has been fed very weak elemental feed at a mind blowing 5 mls an hour!! And nothing has come out of the other end....including the wireless capsule which was placed a week ago and should have passed through recording the inside of Seraphinas intestines for the consultant to see.Instead....it's looking increasingly likely that it spent 8 hours recording the same little piece of intestine in which it was placed ( so much for that brilliant idea then lol )

We are getting to that point in the stay where the Gastro team seem to drop to their hands and knees and crawl past Seraphinas cubicle window hoping the mad mother with a lot of questions ( namely how are you going to fix my daughter and have you got PCT funding for home PN yet ) doesn't poke her head round the door and spot them.One poor SHO was sent in yesterday ( he'd obviously drawn the short straw) and asked how she was and if she'd 'passed the capsule yet?' in a hopeful voice. When I replied no, I saw his downcast expression and felt so sorry for him I almost offered to make him a cup of tea!

so we begin week 6 hopeful of small steps forward.her discharge planning meeting is set for the 12th April so I'm homing that it won't be too many weeks after then that we are home.

I have been astounded by the love and support my family have received while We are away. my Church family cooking meals for my husband and children twice a week and the wonderful Postpals charity for their lovely postcards, letters and gifts for Seraphina and me which included a lovely furry blanket to snuggle under instead of the static clingy hospital ones :)

The other big news is that we have managed to find Seraphina a kitten for when she comes home.... A beautiful Ragdoll boy :) This is proving to be a source of excitement for all concerned and something I am also hanging on to...something wonderful to look forward to and aim for. Seraphina has been watching the video today that the breeder kindly sent of the litter....SO cute.

All in all we are doing ok. It's a hard road and one where I have had some really dark days but thanks to the prayers and love and support of those around us we are getting through it.I do feel so much for my other children and feel like I am making such a mess of being their mother,not being there when they need me and not being able to 'make it better ' for them. I can't clone myself though and Seraphina needs me...so I pray that they understand and know how much I love them all.I thank God for the support of our Church family.

I thank you ALL for your support....it's really left me speechless at times exactly how many people care about us both in 'real life' and online.

I hope this has updated you as where we are at now.will update again as and when.
Once again...THANK YOU xx

Sunday 11th March

God my Rock, my strength,my all
Will you catch me when I fall
I had not planned to take this trip
Steady me when I start to slip.

May I always treat others with love
and patience from you Father above.
No matter how dog tired I get
Remind me you've not failed me yet.

With your Holy Spirit I stand
Side by side and hand in hand.
She looks and feels a breeze, a dove
Assuring her she's wrapped in a circle of love.

Day 8 in the big brother house

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

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.