CT Scan photos

I started this blog for myself to keep track of all that was going on, and to also keep family and friends updated on Gabrielle. Now my main focus is to help other families dealing with craniosynostosis. Over the past few years I have been contacted by several other mothers who have children with craniosynostosis. When I hear from them I want to reach through the screen and give them a big hug! I met a wonderful mother through Gabby's journey who took me under her wing and provided me with all the information and support I needed to get through the trying times (thanks Cindy!). I strongly believe that once you go through something like this and experience those wonderful people out there, it is then your turn to give back. I hope that this blog can help provide information and an honest view of one little girl's journey through craniosynostosis and be helpful to those looking for information.

I was debating about ordering Gabby's CT Scans to post some pictures. I didn't know if it would be to graphic for some, but my purpose is to educate so I am going for it. I requested the CT scans and they arrived in my mailbox yesterday. Now I can share what her skull looked like one year out, and more currently, just as it appeared three days ago at her 2 year check up. Remember that a skull of a child this age should not have any open areas anymore. Those that Gabby has were created from expanding her skull during her surgery.

I am amazed by what our bodies can do. I hope you are too!

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The first photo is from a year ago. When you look on the second one you can see all the screw holes have healed and the opening on the front of her skull is definitely getting smaller. You can see that the area on the top of her head on the left is healing well too.

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This is the large area on the right hand side of her head where Dr. Jensen moved her skull out the most. The smaller areas are filling in, but the large one has a ways to go. Dr. Jensen said that the brain has to continue to grow to better fill in the space that was created. He believes it is the outermost layer of the brain, the dura, that helps contribute to the bone growth (if I understood him correctly).

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Also healing nicely!

If you are a family going through craniosynostosis and would like to chat, please feel free to email me at jodi.danen@yahoo.com.

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".