Max had a check up with the neurologist a week past last Thursday and we got the amazing news that they no longer believe him to have evolving cerebral palsy. Simon and I doubted he had it given his range and flow of movements although we did still keep a closer eye on his development. I thought it might show itself more as he started to walk but it looks like we no longer need to worry about that now :) It was amazing to be told by the Dr as now we can put it out of our minds completely. I can't say i'm not still annoyed/angry at how we were told in June last year - it seemed a very quick assumption (it was never officially 'diagnosed') and the heartache we went through and our immediate family went through was unnecessary - it was a complete bombshell at the time given what we'd just come through with Max already. Overall, the treatment Max has had has been second to none, the nurses and in particular his surgeon have given him amazing care so it was only 1 bad experience.
Max starting walking with his walker last Friday - he just took off and even managed to steer it rather than just crash into walls! I was so amazed as he'd never even attempted to walk with it before, although he won't perform when we want him to - I guess that would be too easy!
We have two appointments at the hospital next week, 1 with the respiratory Dr to check all is well with his breathing, lung development etc and the other with a speech therapist and occupational therapist to re-assess his eating (or lack of it). He has had some good 'tasting days' where he licked his daddy's homemade lasagne and some tikka masala sauce followed by butterscotch angel delight (without retching) but in the main although interested in watching people eat he likes to keep to his distance.
Our main concern just now is the amount of retching Max continues to do. We were told it may get better as he gets older but so far this is not the case, which is very disappointing. Its very hard to watch him look so distressed and do nothing about it. We may look into trying some new medicines to see if this will calm it, something we will discuss with his surgeon.
Max has been ill again for over a week but he seems to be getting a little better and with the weather getting much nicer hopefully he'll get a good spell of feeling well. We are off to Spain in August for 2 weeks so that will do us all the world of good to get a break - after the burst pipes in November we are only just getting the kitchen re-fitted so things still feel quite hectic at home.
Hopefully my next post will say that Max is walking!
Kxxx
