"For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.

My frame was not hidden from you when I was made

in the secret place, when I was woven together

in the depths of the earth. Your eyes saw my

unformed body; all the days ordained for me

were written in your book

before one of them came to be."

Psalm 139: 13-16

Friday, December 7, 2012


What a week! Miss Meghan has officially earned her flying wings, and she did fantastic. Our trip Philadelphia went about as well as we could have hoped, so THANK YOU to everyone who was praying for us while we were there.

We learned a lot about her anatomy: specifically that the two hemivertebrae that are in her cervical spine (neck) are on the same side.The surgeon described it as a stack of blocks, with two wedges inserted in between entire blocks, causing the stack to tilt. Here is a picture to help you understand:

The second vertebrae did not form correctly on one side, and the joint, and possibly the ligament, on that side that holds the first and the second together is not present. That is the part that puts her neck in the category of “unstable”, meaning that abnormal motion in the spine could occur and injure her spinal cord. We learned that she will definitely need surgery to 1) fuse the bones to stabilize her neck and 2) correct the tilt caused by the hemivertebrae. The surgeon said that it is important to correct the tilt as it causes problems in how the brain relates to the world when the eyes are always interpreting the information from a tilted position. Unfortunately, the fusion will significantly restrict the range of motion in her neck. He said it will be a fine balance between her function, and her fusion. This will take place at some point between the ages of 2-3, when her bones are more completely formed, and able to handle the hardware. In the meantime, she may need to wear a brace. We also discussed the hemivertebrae in her thoracic spine (chest). The good news is that the two bones are on opposite sides (like in the first image above). This means that the two wedges may just cancel each other out, and the scoliosis won’t become too severe (which would mean no surgery in her chest!). We will follow this with X rays every few months to monitor the curve. 

Today rounded out our crazy week with her regular pediatrician appointment, and another visit to radiology. She has gained a little weight on her new diet, so we are pretty happy about that! Next was the Upper GI series which was a special XRay with dye of her esophagus and stomach to check for abnormal connections. It wasn't too traumatic, and Praise God, it was NORMAL.  Ah, reliefJ

Our neurosurgeon called this evening to talk about Philadelphia and another expert opinion she was able to get (side note: seriously, this doctor is amazing- she is fighting for Meg as hard as we are), and we were able to come up with a plan. Meghan has another MRI scheduled in February to look at her brain, and entire spine/cord again. We will make a decision at that point as to whether or not she needs to wear a neck brace until she can have surgery, monitor her Chiari Malformation, and also to see if she needs surgery to correct the tethered spinal cord. It’s our “next step” in what we are told is going to be a long road ahead.  

I can see there is a road ahead, but right now the details are fuzzy and in order to travel it I have to focus on the car in front of us. One. Day. At . A. Time. Meghan has a pituitary stimulation test next week that is not going to be particularly pleasant for her, and another eye exam the week after to monitor her strabismus. In the meantime, we are cleared to resume a modified PT/OT routine which means we are getting back to therapy! I am really glad to get back so that we can help Meghan meet her goals, but it definitely adds the stress of more appointments again. With the holidays approaching, it all feels a bit overwhelming (ok, it’s a lot overwhelming….), but  I firmly believe that God created days in 24 hour increments on purpose, and that is all I am meant to handle at one time. (He also gave us Google Calender, and Starbucks for the days when we need a little extra help). SO, at the end of the day, I am rejoicing at all the positive news we got this week, and trusting Him with the plan for the future. After all, He is the one driving the car, keeping my path straight, and providing a priceless insurance policyJ  

Ready for takeoff!

When in Philly, get a cheesesteak....

Playing with Daddy:)

I tried to convince her that it was really "vacation". We went to the pool:)

CHOP has hospital gowns in her color!


  1. Sarah, Thanks for the update and the pictures. She is so beautiful, and has the cutest smiles. Keeping you all in our thoughts and prayers.

  2. Great post! And so happy for all the positive news and a plan. I love the picture of her kicking/grabbing her feet. You can certainly see her personality coming right through the lens!! Love the purple gown too - CHOA has those as well! Gotta keep our girls fashionable :) Prayers for a continued smooth path with the therapy picking back up and for the plan to become more clear as time goes on!!! :)

  3. I just love your little family! And even though we don't see you all that often, I do keep up on your posts on FB and pray for you when God brings you to my mind. Wishing you all a very Merry Christmas and many more blessings and positives in the new year!