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). 



  1. Hey Lisa, I am so glad to be your special friend. I pray fpr and think of you often. You are a terrific mom and our boys will always be okay. I hope this new road with a new issue will be a smooth one. I pray that even on the most challenging days, You will find His perfect peace.:) Love you!

  2. Lisa and Dennis....Hey kids , God got us through the hard part, and you know he will get us through this.. with all the faith we all have, and all the love we have for our Savior, we will again come out with our Miracle Baby on top again. Love you all.

  3. "For I know the plans I have for you," delares the Lord,"plans to prosper you and not harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you." We will continue to pray for you all...

  4. Lisa, I am sorry you've hit another bump in the road with Ramsey. Please update when you finally get to talk to someone about the spinal cord issue.

    And bless you for seeking peace. So much harder some days than others. But so much more satisfying than the alternative(s). :)

    Corinne, Samuel's mama

  5. Special prayers for you Ramsey at this time.
    Love and Hugs,
    Grandma Razza