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 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.

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!!!

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!

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

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

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....

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..