Wednesday, November 16, 2011

Perfect Peace

Believe it or not, there were benefits to Ramsey's hospitalization. One of those was making new friends. Liz is one of those special friends. Today, Liz wrote a verse on her blog (A Very Special Case), "I will keep in perfect peace he who trusts in me. Isaiah 26:3".

Yesterday, I was not in perfect peace. Today, I am working on it. Ramsey had a recent checkup with CHP regarding his torticollis (the stiffness in his neck that caused the flat head and necessitated the helmet). His head is rounding out well in the back, but it is now a bit "long". A CT scan was ordered to rule out that "one percent" chance that something was causing the lengthening of his head. Yesterday, we got the results. His brain looks good! There is a cyst but it is benign! They didn't find anything they were looking for, but they found something else. 

Ramsey has a spinal anomaly. His skull is fused to the C1 vertebra (the top of his spine). Also, the C1 is smaller than it should be.  I was referred to Neurosurgery where I set up the first available appointment on December 7. I asked for someone to talk to, someone who could explain what this might mean for Ramsey. I was told I could talk to someone but they wouldn't be able to answer any questions until our appointment. I was left to make the only illogical decision we all make- googling. I found some scary info which, in hindsight was probably a worst-case scenario or perhaps an unreliable source. After panicking, I googled again. I found people who discovered a skull/C1 fusion decades into their life, after headaches began.  I found lists of other symptoms that, although undesirable, are less worrisome than what I originally thought.

I was advised to remove the helmet and to stop doing any types of therapy on his neck. They feel his head will naturally continue to round out on its own. As far as the length of his head, that's still unresolved. We are having another scan to take the current measurements. I believe that's just how his head was meant to be shaped. Our family has long heads. His head wasn't meant to be round.

Today, I talked to our awesome pediatrician who always knows just what to say. I asked her about the fusion. She said Ramsey might face limited mobility or headaches. If he needs surgery, she said it would be a mild surgery to release any impingement. This is just her observation based on my information, but at least it's something. 

It's ironic that they even found this issue so I am thankful that they did. I will pray that if he needs surgery, that it is an easy surgery. To me neurosurgery doesn't sound like it would ever be easy (guess that's why I sit behind a desk all day). 


Tyler Update

Baby Tyler had his surgery yesterday and he is doing great! We're praying for a quick recovery.

Sunday, November 13, 2011

Is CDH Genetic? Pray for Tyler!

Today I have a prayer request for my second cousin's son, Tyler. Tyler was born almost a month ago and was admitted to Children's yesterday where they determined he has CDH. Apparently, the defect is a small one which allowed him to do OK until now when part of his intestines herniated. Please pray for Tyler and his family. Surgery is expected this week. I am hopeful that he will have a quick recovery and will be home in the arms of his loving family asap. But for now, I know he is in good hands.

Of course, I can't help but wonder if there is a connection to our son's diagnosis. If there is a genetic link, I hope that families like ours might be able to help to researchers determine that link.