I will never forget Grayson’s Paed telling me the best tool in helping a disabled child is the parents, lets be honest as parents we understand our children different to anyone else and when you have a child with no communication it becomes an even greater sixth sense.
Over the years I have learnt Grayson’s signs, especially when he is unwell or in pain. Grayson’s brain does not send messages of pain like other people, he only cries really from shock or being over tired, it is hard for people to understand but his team of proffesionals get that, well most of them that is. One in particualr failed Grayson a few years ago and has now done it again.
Grayson’s fall is still not fully explained, there are several theories, but I guess the main one is it is a combination of things, one being a new type of seizure, so we are off to see a new Neuro specialist in Epilespy, because as always Grayson’s has a very rare form, combined with Grayson still having severe muscle weakness, although he looks very strong to the outside world this isn’t really the case. But lastly it is due to his legs being in pain.
3 months ago I asked his Physio to look at Grayson as I was sure he was in pain, maybe his hips are getting worse again, she told me he was fine, then after his fall I called her again as he now wants to walk on his tiptoes and his ankles look damaged – she finally agreed that he was flat footed and needed insoles.
She was wrong, I knew in my heart she was, yesterday we saw a top physio who confirmed Grayson is in a great deal of pain with his legs, probably a combination of things, but flat footed, legs twisted, calf muscles too short, hip issues and he now needs to see his surgeon asap, as well having AFOs made for night time use. I just hope we can get him sorted as I really hate to think of him suffering and walking is his new favourite thing to do.
My poor boy lost some weight too, I am not surprised he is looking so thin and his Neuro was shocked by how thin, he was pleased we have now agreed for the feeding tube, although they all agree now that his base line is the problem and it is unlikely he will start to gain weight, it is now a case of trying to delay organ failure.
Yes you read right. I have no idea how to feel, when I say it I feel sick to my stomach, but then logically my brain says but they have no idea, this is all best guess-work. I know that he is malnourished and I know that there is only so much a body can take, but then I also know he defies odds every day.
I am frightened for our future and how many medical problems it shall bring and the thought of the pain he may endure, he doesn’t deserve this, but I have to push that away, you can’t focus on the future as we are not there yet.
My little Unique Superhero has his notes sent all over Europe to top doctors in his field and as with the UK’s they to believe he is Unique, very interesting, he is to start some new genetic studies, which they are sure will show us the root cause of his problems, but it is unlikely to help in any way – I think at least we may help someone else in the future.
All I know after yesterday is that I am one of only 2 people in the world who really understands my son and I never must doubt my sixth sense when I feel he needs help, I must never again feel belittled by somebody to his pain and I know more than ever I need to make his everyday as special as I can because in all honesty we have no idea how many lives he has left.
Time for a big Superhero Ball I think ? I have been wanting to do this for some time, but delaying it is not a option, next year I will throw a HUGE ball for all, now to start working on it. Any help would be greatly appreciated.