Gabby's Journey Through Craniosynostosis

Friday, April 1, 2011

Two Year Anniversary!!



My beautiful daughter is celebrating her two year anniversary of her surgery to correct her coronal synostosis today! She is the bravest little girl I know. Gabby has the most spunky personality and always keeps us on our toes! She was born with this personality for a reason I believe, to help her have the drive to heal and never let anything get in her way.

What is coronal synostosis you ask? Here is a definition:

The coronal sutures begin at the ear and continue superiorly to the top of the skull to meet the sagittal suture. When one suture is fused, the forehead on that side is flattened and swept back with the eye in its socket. The surgical correction depends on whether one or both sutures are involved. When one suture is fused, it is removed and the forehead and brow reshaped and brought forward to match the other side. In addition, the cheek is also brought forward to reposition the eye socket.



We had Gabby's two year appointment at Children's Hospital of Wisconsin yesterday. She had to have another CT scan done and a visit with Dr. Jensen. I tried to prepare her to lay still for the scan, but that only resulted in tears. Once there, the nurses also tried to get her to lay still, but there was no chance of that. They tried Versed, a drug to help relax her. This resulted in a child that acted a bit like she was drunk. Not a great way to see your child. We tried the scan again, but by the time they had her strapped in and ready to go, she realized what was going on and she wasn't going to let that happen. So the needle had to come out and they gave her an IV to put her out. She fought that tooth and nail as well. They had to give her three doses of the meds before she gave in. Poor baby. After waking up from all this we had one horribly crabby child on our hands. I guess the Versed is to blame for that. Gabby certainly has her moments, but I have never seen her like this! She was throwing toys, scratching, and even biting her brother. She was a little devil! She somehow was ok for at least the first part of our visit with Dr. Jensen so he could do his measurements.

The results from the CT scan were good. It is amazing to see all the repair that is occurring on her skull. We got to see the scans from last year compared to this year. Most all of the screw holes are now filled in and a bunch of the open areas on the top of her skull and the left side are filling in a bit. The large area on the right side did not have as much growth, but I guess it is not something to be concerned about right now. Good news! Even better news is that next year she doesn't have to have a CT scan done! She will just have to go back for a visit with Dr. Jensen. He did say that she has had a bit of retrusion of her forehead where the correction was made, but said that in person it looks better than on the scan. I guess this is to be expected, but it should not get any worse. I pray that she never has to have anything else done and that she continues to grow properly!



With that behind us, Gabby is looking forward to her 3rd birthday coming in June. She has been talking about her birthday for months now, and I think it is mainly because she gets a cake. She is talking up a storm and has the attitude of a 13 year old. She now knows about her surgery and uses it to her advantage constantly these days. If you touch her the wrong way she will not hesitate to inform you to watch out- she had surgery on her head! She has no clue what that means, but that doesn't matter to her.

Here in Wisconsin, spring has not come yet. Hopefully now that it is April it will arrive soon!


Splashing in the mud in Michigan with Nora


Making snowmen. Gabby insisted on her "little tiny snowman".

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