Carson.....

On Friday, September 26, we took a scheduled trip to Children's Mercy for a skin biopsy. This skin biopsy will be sent to Dr. Kaler in Maryland for research. Carson did not feel a thing during the procedure, but he sure did feel the shot of Novocaine before hand. Dr Graf, Carson's Neurologist took the biopsy. During this appointment, Dr Graf also got the chance to see Carson eat his lunch. Dr Graf thinks he might be micro-aspirating (inhaling his food into his lungs) as you can imagine, this is not a good thing. There are some tests we could do to check, but the majority of them would be inconclusive. The best thing we can do is watch for signs...the main one is infection like pneumonia. To help Carson drink easier, Dr Graf suggested adding Thick-It to his milk. This makes the milk thicker, making it easier to swallow and less likely to go into his lungs. We started this immediately and has helped Carson drink easier. Dr Graf is also changing up his medicine. Carson's body tone is always very tight, Dr Graf explained this to us, his brain just does not have the function that tells his muscles to relax. In order to help Carson relax his muscles, we are going up increase his Clonazepam (muscle relaxant and anti-anxiety). Dr Graf said we will really like this drug as it will help with seizure control and his tone. We are also going to decrease his Phenobarbital. We continue to pray that these changes will make Carson more comfortable and give him more seizure control. Please continue to pray with us.

We are still struggling through teething. Carson has two teeth in plain sight and a third the is just poking threw and working on a few more. His gums are so swollen and bleed when the tooth starts poking threw. As you can imagine, he is crying a lot. We are doing all we can to keep him comfortable...Tylenol, frozen wash clothes and pacifiers, and oral-gel. I just keep telling myself, it is a good thing he will not remember this when he grows up.

We have seen an increase in play from Carson. He has a light box (just that, a light box that we put transparencies on, colors and patterns) he also has a Big Mac, a button that plugs into the light box that he can push to turn on his lights. He has been pushing this button with his hand and/or foot to see his lights. It is great to see! He has also been playing in his 'play box', he has found his bag of jingle bells again and likes to hit them to hear the sounds. Also in his 'play box' he talks to his toys. He has such a sweet voice, I can not hear it enough. We will work very hard to get this on video and add it to the web site.

I think that is all for now...will let you know when videos are up.
Sarah