I will start with our last trip to see the geneticist. We just discussed Jack in general and how he is getting on. We were discussing with him the fact that we have found children with similar to Jack after him saying that he hadn't really read about any cases like Jacks and he explained something which we hadn't understood when he first discussed the diagnosis with us.
Jack actually has three different types of cell. He has the one that has every perfect copy of each chromosome, then the copy that has only one copy of chromosome 21 and then he has a further type of cell which has one perfect copy of chromosome 21 and one that has a deletion in it. Therefore making him really quite unique. I know its ever so confusing and difficult to understand. I would love to know that Jack has a very bright and relatively 'normal' future but at the same time I wouldn't change him for all the tea in China. He really is so so special. I do have to admit to finding it very interesting. He is amazing.
We had an appointment with a podiatrist and finally we have found what has been going on with his legs and feet, I knew something wasn't right there. He has hypermobility in his knees and feet. His knees bend quite far backwards when he is stood and it has therefore made the tendon very tight. The podiatrist also described Jacks feet as strange haha. He said to look at them you wouldn't think that there was anything wrong but when you watch him walking they just do their own thing completely, they are all over the place. The muscles are working over time with each step he takes. He said when we have done a long walk or climb and we get up the next day and our legs are stiff and sore, that is what it must be like for Jack every day. With regards to the falling he said his legs probably just stop working at times because they are working so hard and he then crumples (the best way I can describe hoe he falls) to the floor. I hate to think that because he has gone so long getting up in the morning and having pain in his legs, that he is now just used to it as he never complains anymore. He is more of a trooper than I can explain. He is never a moment of trouble really considering everything he has to deal with. The podiatrist found him such a character that he said "I think we may need to review you once a week Jack just for entertainment purposes". It makes me feel truly blessed when others around him get as much joy from him as we do.
His speech is still coming on. He will have a go at saying anything now and even though there is alot that we still cant understand there is so much that we can and more importantly that others can understand.
He is still loving school and likes to tell us about what he has done with his friends each day, especially liking to tell us when someone has been naughty! He absolutely adores his taxi driver and escort, we were so happy when we found out that he was having the same ones again as he has a really strong bond with them and we also feel so comfortable with them. Its awful having to put him in a taxi to go to school so its really important to feel that trust. He did cry the other morning which was very out of character for him, very upsetting for me to see him off like that. When he got home I asked him why he had cried and he said "my want mine mummy" Que huge lump in throat.
I think that's about everything for now. I promise to keep this updated now with all his Christmas activities and also just interesting things we have done together as we aren't your average family!
Me and my boy.
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