Jack is sick with a cold once again. His sleeping for whatever of the many reasons has been poor. His spirit as always is high!
We went last week for the swallow study. At least that is what it was suppose to be. They ended up only evaluating him. He didn't even see a doctor. They watched him eat and then the therapist went and talked with the doctor. Then she came back and said when he is having a really bad day because it was a average day, call and they would fit him in and do the actual study. What a waist of time! Yes it is so easy to call and just get fitted in. I do work ,from home or not I work. My husband has to sleep once in a while, but whatever. Bottom line he appeared OK so they were busy and were not going to take the time to do the actual study.
We went to the pulmonary doctor yesterday and that was a much better visit. He couldn't believe they didn't do the swallow study. He said who cares if they actually saw him choking or aspirating, during the test there is so much they could see. Anyway he saw enough on his own. He said Jacks throat is burned. Not red due to a cold, not a strep looking throat, but burned. The doctor was probably in his early 60's and said it is a burned throat very different from the other types. He cant believe none of these other physicians haven't picked up on it. He suspect a severe case of reflux since birth. It is different then a adult in that the symptoms can be very different. It can cause choking, gaging, upset stomach, sleeping problems, prolonged sickness leading to pneumonia and bronchitis. This could be due to the stomach muscles not working correctly due to the mitochondrial disease. It can also be hereditary and Jacks brother is having issues and his father has massive esophageal reflux. Jacks father was told his type can lead to esophagus cancer.
The pulmonary doctor is starting Jack on meds for reflux. He is referring him for testing to a pediatric gastro doctor. We will go back to see him in 2 months and see more about the respiratory problems and asthma. He wants to see if any of the issues clear up or get better once the reflux is treated. He does think he has asthma but due to the reflux, he isn't sure of the degree. So I can use his nebulizer as needed.
Jack is having a good attitude. It is ours that gets negative at times. I feel bad he has to go through these things. Just keep praying for him and his upcoming surgery in April. Thanks to all of you that keep our family in your prayers.
Friday, March 23, 2007
Tuesday, March 6, 2007
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.
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.
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