Tuesday, 23 June 2009

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.......


Emma said...

Biggest Hugs Caroline x

Tia said...

Sorry the NHS in your part of the world doesn't fund this as it certainly does in other places - one of the less well publicised postcode lotteries I guess.

I hope you have the perfect chair for her soon.