Well, a few months has passed since my last blog and during that time Sophie has been a very busy young lady.
Sophie's health has been stable over the past few months. She had another cold but her fighting spirit helped her to sail through it again. She continues to amaze us with how strong she can be. She needed a minor op last week to replace her Peg (feeding tube that goes directly into her tummy) with a shiny new button. We were in and out of hospital in one day and though it took a lot out of her and a week to recover the button is a big improvement. Sophie has also been taking a new vitamin, called Riboflavin (vitamin B2) for the past couple of months as there was a possibility that it could have helped her muscle strength, unfortunately though, there appear to have been any improvement.
Neil went to see Sophie’s metabolic consultant at Great Ormond Street again and following the their advice he spoke to a dietician and we are going to start Sophie on a low fat, low protein, high carbohydrate diet to see if it will increase her energy levels. Genetic tests to determine a diagnosis for Sophie’s disease are still ongoing but as more results keep coming back normal, we are all starting to think that she either has a new presentation of a known disease or a completely new disease. This is making it very hard for Sophie’s Doctor’s to make a genetic diagnosis. From our perspective, it’s scary enough to have a poorly child but even more scary to not know what’s wrong with them. We have realised that medical science just isn’t that advanced which was a shock because at the start of Sophie’s story we assumed, like most people, that Doctors knew the answers to everything medical.
Since getting our wheelchair accessible car Sophie’s life has changed for the better. She is so much more mobile and we are able to take her out so much more easily. It has made me realise just how difficult it used to be getting her in and out of the car seat with another person needed to hold the ventilator. Now we just wheel her on and strap her in! She loves travelling in the car mainly because she is at window height so she can do her favourite thing; nose at everything going on! We have been able to take her out lots and we now venture out nearly every day. We go out for walks, to feed the ducks, to visit family, to the shops and we have even been kite-flying and to Birdworld (where Sophie looked totally amazed by the flamingos and penguins!) Sophie really loves getting out seeing the world and we are pleased that she can now do this, a year ago we never dreamt she’d be able to do so much. We are determined to make sure she does and sees as much as she can!
CHASE have continued to provide invaluable support to us. Sophie has had quite a few music therapy sessions there now which she really loves. She spent the first few sessions being distracted being nosy looking round the room but in the last few sessions has started to take a real interest in the instruments and loves running her hands through the chimes most of all. It’s so nice for her to be able to make some noise and as she progresses we hope she’ll have more control over the noise she makes. Sophie still goes to Little Chasers where she always enjoys the stories and activities. We have also spent a couple of respite weekends at CHASE where she has had great fun on the wheelchair adapted swing in the garden and also a go at lying on the trampoline. She definitely loves the swing best, we get smiles and ‘yes’ signs every time she gets on it!
Sophie still signs ‘yes’ at everything and nods her head as well. There isn’t much that she doesn’t say ‘yes’ too! She still wriggles in excitement lots and of course gives her little smiles when she is really happy. She absolutely loves Balamory now and if we let her, she will happily watch DVD after DVD with such concentration! She still lets us know she isn’t happy by avoiding eye contact, blinking lots and shaking her head. Over time we have learnt to read her little ways.
We have now been back at home over a year and in that time Sophie has come so far, we are very proud of everything she has achieved. When we bought her home last April nobody expected her to still be here now. She has defied all expectations. We are so thankful for the time we have been able to spend with her and we hope and pray that she will have the strength to keep fighting her disease...she has lots to look forward to, she will be turning 2 next month and we have been looking at schools for her and hope that she can start going for a few hours a week at the end of this year or early next year.
A year on, we just wanted to say a BIG thank to our family, friends and all the professionals who support us, we couldn’t do this on our own and we really do appreciate everyone's help.
Sophie 1 year on! |