Our appointment with the neurologist was the same day so we didn't have to wait that long for the result. While waiting in the room, the nurse came in and told us that the doctor was in the NICU so our appointment would be delayed. Another reminder that we are so incredibly blessed! I think I stopped breathing when the doctor came into the room. I didn't want to miss anything he had to say. He told us that the MRI looked exactly the same as it had before, which is good and bad news. He still has hydrocephalus but it is not bad enough to treat at this time. No surgery is needed! He was very happy to hear that Shane was not having any issues eating and that even though he is still behind physically, he is improving. Because hydrocephalus can injure the brain, thought and behavior may be adversely affected. So even though I am thrilled that he does not require surgery right now, I know that this is going to be a life long issue that we will have to keep an eye on. We go back for a check up in 3 months and possibly another MRI in 6 months.
Last Friday, Shane had his sleep study done. A sleep study measures quantity, quality, and breathing during sleep. Calling it a sleep study is very misleading since there was very little sleep involved. You have to arrive by 7:30pm and he usually goes to bed around 7pm. Strike 1. By the time we got ready him with all the wires, fed and changed it was almost 8:30pm. Strike 2. Sensors and belts were attached to his head, nose, mouth, chest, abdomen, fingers and legs. So pretty much, they were everywhere! The worst part was the nasal cannula. He did not like having it in his nose and every time he moved, it had to be repositioned which was about every 30-60 minutes. Then is would a little bit to get him to settle down and go back to sleep. It was exhausting! The study was over at 6am and it is something I hope to never do again. It will take about 3-4 weeks to get the results.
We have been through a lot this year and I am eternally grateful for all your prayers. Every night as I put him down for bed, I kiss his head and thank God for His faithfulness and mercy. I am so blessed to be this little boy's mommy.
I can do all things through Christ which strengtheneth me.