What Day Is It?

I was walking over to a funeral dinner this morning with one of my co-workers and we were talking and I looked at him and said...what day are we on? That's what I feel like...that I'm just brain dead!

Yesterday was a busy day for Mr. Christopher. We had heard on Friday that we had been approved for our genetic testing and I was excited. I felt like a dork because when the lady told us it had been ok'd, I started crying. We've been wating since DECEMBER!!! We had the lab drawn and he had a skeletal survey which was over 20 xrays of him form his head to toe. This will look to see if his bones are aging faster than normal or not.

On Friday, I also spoke with the Nebraska epilepsy foundation and ironically enough, the wonderful person I spoke to is an O'Neill native. We talked about what I see Chris do and what we are doing with his meds and what we haven't done and the things that could happen and resources to look in to. It was an overwhelming conversation. There was so much information and most of it confirmed what I have been thinking. Their suggestion was to see a specialist...one called an epileptologist.

We had PT yesterday and Stacey was pleased with his movements forward, but stated that we won't see huge changes until our seizures under control. Since I am seeing 3-4 every day, which usually means there are more you don't see, I have no hope for that to happen soon. She could feel my frustration and agreed that the specialist sounds like a good idea. She was happy with the little improvements he has made.

We saw Dr. Prestridge and she was concerned by our aspiration coming back and our stools and doesn't understand why. Jen (speech therapist) and I had been talking about placing a feeding tube to help him get over the sick humps which we are learning we have severe troubles with. She is still very reluctant to put a button in him and I am happy about that, but it's still frustrating that his lungs will not clear up. She agreed that his lungs sounded horrible. She requested that we go back to Dr. Murphy, the pulmonologist and he will have the final say. he will be able to tell us if it is a concern or not.

So the plan is now to head back to Omaha in a couple weeks for our pulmonology appointment. Then call later this week to make an appointment with the specialist.