1/6/09

It has been a long time since I have updated everyone. So much has gone on. Sorry for the long delay. Connor was doing really well for awhile after his IVIG therapy. Unfortunately his neurologist feels that his progress was just a coincidence and not the IVIG therapy that did it. She is the only one that feels that way. All of his therapists, other doctors, family & friends saw a big change in him and it was too soon after the therapy and too drastic after almost 1yr of regression and delays to be anything but the therapy. His walking had gotten better. Not up to what a "normal" 2yr old would be walking and doing things but definatly better than he was. His words and developmental age were getting better. Again not where he should be but much better than where he was.

A month or so ago we realized that he was having an increase in sensory problems. He was starting to have more falls. He knows when he is having a real bad day and uses his walker on his own. But, he doesn't show fear after a fall like a typical kid. He also doesn't seem to feel pain like a normal kid. If he cries after a fall then you can be sure he really got hurt. Around Christmas he started to have a lot more falls. He ended up with a fat & split lip with a blood blister on it plus a few bruises on his forehead all for his Christmas pictures.

Since the last posting his therapies have been increased. We had a Occupational therapy eval for all his sensory problems and his fine motor skills. They have said that he has alot of problems and needs to start therapy ASAP. They are trying to push that paper work through. That will be a minimum of 2 hrs/week. He has PT 1hr/week, developmental intervention 6hrs/week & speech 1hr/week. He is up to 10 hrs/week of therapy. Yet he is still a year behind in just about everything.

We are still trying to get in to the developmental pediatrician for the evaluation for autism. That needs to be either ruled in or out. He has alot of autistic traits but at the same time he has other things going on that have nothing to do with autism. His neuro dr seems to think that is what is going on now. Mind you she hasn't seen him since October. She only talked to me on the phone yesterday for 10 min and decided that the fact that he is getting worse and his walking is getting bad again is not ataxia or neuro problems but autism. We do have an appointment with the developmental dr but not until September 14, 2009. Our pediatrician called this dr and told him Connor's history and the developmental dr said he will see us before February and that Connor can not wait until September to be seen. Thank God for that. I don't know that I can wait that long to have this done.

We are in a holding pattern now and while we are playing this waiting game with the dr's Connor is slowly getting worse again. His speech is still better than we were but he is repeating things over and over again. They call that echolalia and it can be a symptom of alot of things. There has been a lot of upheaval in the house lately from some so called "friends" which I am sure has not helped Connor or his progress any. We are trying to overcome any damage caused by that. The holidays seemed to have also kind of upset the balance of things with Connor. I am hoping now that things are getting back to normal we may see some improvement with him again. I will post as soon as I have something new to tell. Hopefully we will get the developmental dr eval done soon. It would be real nice to have a diagnosis for him. Without that we don't have any idea of what kind of prognosis we are looking at. Keep Connor in your prayers please. He still needs all he can get.