Sorry for the delay in updating. I went to make some decisions about the new house while Grandma Cheryl and Grandma Kathi sat with Charlie. I hadn’t seen the house other than pictures in 2 weeks and I am so amazed at how great it looks. Jared has been dealing with all of the organization of sub-contractors and fixing all the problems (ask him about his horrible day), John and crew are almost done painting the “Rainbow of Colors” (sorry John), and Chadski has almost completed the audio hookups. The carpet looks awesome thanks to Kerry and Dennis who drove 4 hours to put it in. I am so grateful for everyone’s willingness to help. I will never be able to express how much it means to us. Thank you again. It feels like a real home.
This morning I spoke to Dr. Osguthorpe regarding the blood test for Coop’s immune system. There were a few slightly low results but all in all he felt like he has a healthy immune system. Good news! It doesn’t explain why Charlie’s body wasn’t able to fight it but at least it won’t be a future concern. The serotype test to see what strain his bacterium was is not back yet.
Neurosurgery- afternoon (as reported to Kathi and Cheryl). Shunt placement was checked with x-rays and everything looks to be in the right place. There is a little confusion as to what the brain CT showed so I will verify this information with Syd tomorrow. Kathi thought she said the ventricles were larger than the last CT (on the 13th) but Syd (Neurosurgeon Nurse Practitioner) was NOT concerned at all. However, I am very uncomfortable with this finding. I am thinking that it was a miscommunication because the ventricles should be getting smaller with a drain/shunt.
Throughout the day Charlie has had quite a few storms but they seem to be getting a little less severe as we move further away from surgery. While Troy was visiting tonight, Charlie had his eyes open and was not storming. That almost never happens. I noticed that his right eye seemed to deviate to the right so I have asked he nurse to report that to the doctor. He did another session in the gym with physical therapy. I hear he didn’t like the swing this time but he did like the vibration of an instrument. We still haven’t heard from the audiologist about hearing results and haven’t seen a consult regarding cochlear implants. Charlie’s Dad should be back in the morning so the blog entries will get entertaining again.