This week 3/5/07

Jack is having a OK week so far. He is finally over his last cold, and seems to be feeling better. The tremors today were more frequent. He did have PT and Speech this morning which tires him easily. When fatigued he tremors more so I am praying that is all it is.

He finally finished up with the evaluators for his services with the school district. He has to change at three from early intervention to the school district. All the change has to do with is funding and who is responsible to pay. (besides our insurance) Unfortunately his service providers change, but we have his current ones till August.

The evaluations were very frustrating. The night the PT evaluator came he was having a fairly good night. The day for the speech he wouldn't cooperate due to just having speech and PT that morning and being fatigued. The OT evaluation went well. She was the most knowledgeable and caring. The school teacher, and sociologist were helpful also. They understood about his disease the best. He doesn't qualify for teacher because cognitively and developmentally he is average to above. She did say how ever she would say in her report that he would benefit from a program due to his safety, and poor self help skills. His self help skills are poor due to his muscle problems. Now they get all there reports together and we will meet probably April or May (it must happen before his third birthday) for the CPSI meeting. All of his current therapists will go. That will hopefully help in explaining Jacks good days and bad days. I want them to understand his disease, I am bringing Doctor reports along with information about his disease.

We plan on sending Jack to pre school in the fall regardless. We are hoping he qualifies for a program based pre school.
He will qualify for services, we will see about program. What that means is his services in the home will definitely continue. We would put him in preschool our selves like two days a week. What we are hoping for is program. What that means is he will go to a program based preschool which has a nurse on hand, all teachers have a masters in special education , and he would see a speech therapist, occupational therapist, and physical therapist during preschool hours. He would get his services right at school and there is much better equipment that is available. We are concerned sending him to just any preschool due to SAFETY, and he has poor self help skills. He fatigues easily and are not sure how he will due. So many things act up when he is fatigued. So having a nurse on hand and teachers who will understand his condition sounds great. These are regular preschool that anyone can send there child too. They have a 10 to 5 ratio. 10 "average" children, to 5 with some type of" special needs". Jack could benefit in so many ways by receiving program. Our fears with program our how much can he take. It would be 4 to 5 half days a week. We had only planned on putting him in preschool 2 days a week. We will see I will not know until the meeting. If he gets denied program (which his therapist thinks he will not) then I will put him in one of these program based preschools anyway a few days a week, and then he will get his therapy's at home. For his safety a preschool that has program is better. So we are just praying we get the program. I am a little apprehensive, but I have to try not to worry and do what is best for Jack. It is so hard to always know what is best for him due to his disease and the in consistences we see and deal with . I just pray God helps us in making all decisions with Jack. If program is the best way to go we hope he gets it.