Have just come back from last minute weeks holiday at friend's holiday cottage, got permission to take girls out of school and have spent week on beach, on river and eating cake - heaven - but exhausting, ds is hard work away from home, and was very unsettled and clingy, plus he and girls slept badly, throw in ds's 5 am starts and dh and I need a holiday we are so tired!
Hello Hayley, the Mail article was very interesting, it is so true how hard it is for others to understand when there is no diagnosis. The other day a very close friend, kept saying, 'but ds will catch up, I mean it's not as though he is actually disabled...', I know she is trying to be positive, but it seems to minimise the experiences we are going through - 4 hospital appointments in 2 weeks, having to decide whether ds is fed through a tube in his stomach, an inability to chew and swallow food properly, piedro boots to try and stop his feet clenching into balls and speech still at the level of a 6 month old. If ds had a diagnosis then at least we would have a hook to hang all these issues on - but if I say something like this, people say we are being negative and trying to 'label' ds.
Hanbee, I felt so positive at ds's first TAC meeting, all those professionals there to help ds, and a real plan of what therapies would be in place and what tests were needed. The trouble is over the course of the year, ds's needs have changed and it feels as though all the support has fallen away. I think part of the problem was that his lead professional was picked for us and she has been appalling at keeping in touch, and chasing up the things we needed chasing, leaving me to try and work everything out. I have asked for another TAC to be called next month, to try and bring everything back together, and update where ds is now. I feel as though this time round I will be a bit more kick-ass about the whole thing. On the positive side it is really good to get all the details of all the professionals involved, and get a chance to co-ordinate the care.
The report came back about ds's feeding, and the feeding SALT recommends a gastrostomy, as does his consultant. Ds's SALT has given us some advice on ways to try and minimise the aspiration and has advised upping the amount of exercise (swimming 3 times a week, lots of soft play etc) to try and improve his muscle tone, also to find out about chest massage. But she said that probably one more bad chest infection will tip the balance to getting a tube.
Our genetics appointment has finally come through for Fri 13th April (repeats -I am NOT superstitious!), it is in Oxford and in school holiday time so we now have to find someone to look after the girls between 8am and 2pm -aaaargh!
Hope everyone is ok, sorry that was such an enormous post!