Today is going to be different. Normally we celebratemy father's birthday today. He wasn't big on presents so if we were near each other we would play golf, if we were not, he would play golf. My father was not happy about thekids having dystona and stressed about it. I know if he has a say from above that he has it cured.
Tyler was sick yesterday so he didn't go to school. He is feeling better this morning so I ams ure he wil go. Ty does not like to miss school. It is very difficult for him to get caught back up. Tyler's left hand has improved. His fingers stay straight now where before they would curl backwards and show more seperation. He goes to programming every six weeks now instead of four weeks. Sometime during the fifth week his dystonia starts to get worse so it makes it easier to see the programming when he goes to the office on the sixth week. His tube has been itching him. It is time to replace it but noone like to do it so he puts it off.
Samantha gets her brace on Friday and she is excited because we are hoping it wil help her foot and maybe her walking. It is like a Forrest Gump/Michael J. Fox brace that she can wear in her shoes. We started her an Baclofen yesterday and will steadily increase it to see if it will help. She writes less because her shoulders raise and it is difficult. Sammy's ankles are tighter and the botox was not as effective last time she got it. They will try a higher dose next time she gets the shots but they are watching her to make sure that she doesn't get contractures. There has been some talk about Deep Brain Stimulation but we feel it is better to wait until she is a little older.
Luke wants to play soccer and basketball. I am reluctant to expose him to team sports too much in case he gets Dystonia. We will let him make that decision and see how it goes.