Thursday, 11 November 2010

Song for Seraphina

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...

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 :) 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 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!!

Friday, 1 October 2010

Blog stats..WOW

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

Thursday, 30 September 2010

Seraphinas dream wish....saga

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 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.

Wednesday, 29 September 2010

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


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

Thursday, 16 September 2010

Its been a bit full on..

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 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 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.

Sunday, 12 September 2010

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

Wednesday, 8 September 2010

Results day

Today I came home to find a letter on my 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 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.

Sunday, 25 July 2010

Its been a year..

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 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 world.