Hi Friends (:
Well we made an appointment with a neurosurgeon for April 29th at the beginning of this past week... but I was secretly hoping we could get it moved earlier so I had yet to blog it and make it official... but it's official. We will be seeing Dr. Puccioni, who is supposed to be a rockin neurosurgeon, so we are happy about that. John has actually heard of him around the OR at UNMC, so that is probably a good sign.
The results of Evie's MRI are kind of up in the air. On the CT that she had in the hospital in February it looked as if her sutures were wide open. On the MRI last week it looked like they were completely closed! Unfortunately with hypophosphatasia, Evie's bones are so demineralized it's hard to tell the difference between what is bone and what is cartilage. There is another fancy CT scan that makes a 3 dimensional view of the skull... and that may be our next step. I am going to try to push and have that done before our neurosurgery appointment... so I can take the original CT, the MRI, and the new 3D CT, and hopefully by putting the three of them together we can have a better idea of what we're looking at.
I am also trying to find some other parents whose kids have had craniosynostosis surgery to see how the experience was for them. If you or anyone you know has done the surgery, I would love to chat with you. I would love to find someone who has had hypophosphatasia AND the craniosynostosis, but with the disease being so rare, it's been a challenge!!!
On a lighter more wonderful note, we had an awesome Sunday, with a great message at church this morning, and fun afternoon at Bible Study. I hope I never take for granted the blessing of being part of God's family, and being loved by His people. I am so thankful for the trials of this past year and my deepened appreciation for the love of God.
We have an easy week, just PT on Wednesday and a pulmonology appointment Thursday morning, so I am planning on spending a lot of time outside in this beautiful weather!
Love you friends! Will update soon (: