James still has his feeding tube, but we are not using it. He was upgraded to a minced diet at his last swallow assessment. He is drinking thickened liquid, and boost. He has a pretty good appetite now too! He enjoys muffins and soft cookies as well . I am mixing his meds with chocolate pudding and he just takes that by mouth. We are flushing some water through the tube to keep it healthy and patent, and I am hoping it will be removed this summer. He has been able to eat kinder surprise eggs over this Easter weekend, which he has greatly enjoyed!
He has made quite a breakthrough with his walking lately too. We have put the walker aside for the moment and he is walking with me on his left elbow and a cane in his right hand. His major problem with walking right now is that he relies very heavily on his left hand to "save him ". When he using his left hand for anything it sends signals that overdo it. And it makes it difficult for him to get his weight over his right leg to move his left foot. His physiotherapist made some changes to his wheelchair that made a big difference to James being able to get his weight shifted to the right. It is amazing what a few simple changes can do! He put a wedge under the left side of his seat cushion to shift his weight over to the right hip when he is sitting and took out the left arm rest so he isn't leaning on it.
Speech therapy is going really well too. James is saying " hey mom" to get my attention now. He said " happy" and his therapist said " birthday" To me on my birthday! He now sees the speech therapist once a week. He said "stop" quite clearly last week, so we are trying to work that into daily use too.
He is going into the bathroom with his chair and getting changed independently now. He also gets in and out of bed himself now too. He has taken on getting one of us to help him with his morning exercises. No more reminding him to do them, he reminds us!
We have a couple of big appointments coming up. The physiatrist in Nanaimo is going to give James a Botox injection in his right shoulder at the of April. I am hoping that this will make it easier and less painful for him to use his right hand and arm. In mid May we are going over to Vancouver to see a physiatrist from GF strong ( Neuro rehabilitation center). I am hoping that he will be accepted to have some either in or out patient services there over the summer.
Here are a few words from James about his progress this month!
Thanks for the update, Dawn. And great to see James's own thoughts on his progress. Sorry it took us a month to find it... now we are curious about an end-of-April update??
ReplyDeleteKen & Anne