July 2, 2009

We have so much going on and yet not much new. If that makes any sense. Since my last post Connor has seen the new neurologist, had an MRI, had some genetic testing, we have had appointments at the school he will be going to in the fall because he ages out of early intervention on his birthday. I will try to do this chronologically.

Our appointment with the new Nero dr didn't go as well as we had hoped. He won't take Connor's case. He says it is too complicated. That he would refer us to CHOP. He did order blood work for some genetic testing, an MRI and some special hearing tests. Connor has had the MRI done and that showed the "foci's" or spots on his brain are stable. They haven't gotten worse. What he didn't tell me until I got the report myself is that there is a problem showing with the blood vessels in his brain. He has a hypoplastic vertebral artery. Which mean that the artery running up along the spine of his neck to the brain has no give to it. It is stiff. (very basically put). The basilar artery is ectatic which means the artery being fed by the vertebral artery is slightly bulging. I looked this stuff up on my own and then called the dr because they both can lead to a stroke. I was told that it had nothing to do with what is going on with him now and he hasn't had a stroke yet. DUH! I knew he didn't have a stroke but what about what may happen in the future? So it has now been decided that we need a consult with a Neurosurgeon. We haven't got the genetic testing back yet. Hopefully next week. We are holding off on the hearing test because he would have to be put to sleep for it and no one told us that when we went to do the MRI or we would have done them at the same time. Now I don't want him sedated until he is checked out by the neurosurgeon.

We need to go to a whole bunch of different dr's and so far I haven't made any of the appointments. The neurosurgeon and the cardiologist have to come first. Connor needs a cardiologist now because he now has a heart murmur. We need to get him to a gastro dr because of the chronic diarrhea and the choking. The school is insisting this all be done before he starts at the end of September. He will need a barium swallow test so that they can see the structures of this throat while drinking something to try and determine why he is choking so much. We have seen a developmental eye dr because his occupational therapist thought there may be some processing problems but that turned out ok for now. He has to go back in 6 months. Our pediatrician wants him to be seen by the metabolic team at chop also. I honestly don't remember what the reason was for that one.

We had Connor's 6 month meeting for Early Intervention. He is now getting 14 hrs of therapy/ week. They upped his OT to 5hrs/week and his speech went up to 2hrs/week. We also had our meeting with the school case manager and the school. I am so not ready to be sending my almost 3yr old to school. None of my kids went to preschool or daycare and here I have one that has the most trouble and I have to send him out of the house sooner than all the others. The big debate is if he should go into the disabled preschool which is 2 1/2hrs/day or the autistic class which is 6hrs/day. My first reaction was no way was he going for 6hrs. He was going to the preschool program. But, after meeting both teacher and hearing about the programs and the teacher to student ratio I really like the autistic class. I am still not happy about how long it is and we are real worried about how he will do away from me for that long. But, the teacher is great and he really liked her. Connor will make the 6th student in the class and there is a teacher and 4 aides along with all the therapists that are in and out of there. I am just not sure what the right thing to do for him is.

Connor is doing better in some areas like his speech is getting better. Still not any where near what it should be but better. He is not so rigid with that he will touch or not touch. His balance is kind of status-quo. He is still having some major risk taking behavior because he doesn't understand that things are dangerous. He will only talk to his 2 cousins. Other that that if any other kids comes near him he goes into his own world and acts like they aren't there. He is having some problems with his temperature. If it is hot outside, if he is tired, if he gets anxious then he starts to run a fever. As soon as the problem (what ever it happens to be at the time) is fixed or goes away then so does his fever. Our dr said that there isn't anything we can really do for it but try to treat it at the time. I can see this having some big problems with the school. I have started to give Connor Melatonin at night before bed to try and help with his sleep issues. Things are at least 90% better than they were. He used to go to sleep @ 9-10 (started trying by 7) then he would wake up around 12-1 and be up until sometimes 5 in the morning then he would be up for the day by 6-7. I was a walking zombie. Now for the most part he is down by 8 and up by 7 with maybe one wake up in the middle of the night but not for too long. Much better!!! We are also in the process of trying to get SSI for Connor. There are so many things he needs and some much our insurance won't cover. I am keeping my fingers crossed. Hopefully if we get it we can get him into a Defeat Autism Now dr.

I will try to post again next week when we get the genetic testing back. I keep hoping that they will find SOMETHING. I need some answers soon or I am going to go crazy.