Dr Magge walked in and was really immediately impressed at how well Alice looked. He needed to be reminded of how she looked before surgery because he said from looking at her straight on he really couldn't tell she ever had Craniosynostosis. I pulled up some pictures on my cell phone...and then he pulled out his digital camera so he could take comparison pictures of her journey. I told him about my fears of more surgeries and about stories I have come across online. I really needed him to ease my fears....and he did. He looked at me and smiled and said "I'm really optimistic"...for a second time he had said that! That made me feel great. I asked him if the amount of time he originally said for helmet therapy still stands and he said that we should just count on her being in the helmet up to 18 months, which would take her almost to her 2nd birthday, he said if it's less than that then it is but for us just to count on that. The main reason has to do with the type of Craniosynostosis that she had...with Unicoronal Craniosynostosis, one side of the head grows outward when the other side is fused...and since Alice's surgery was done at a later age, she would need more time for the other side of her skull to catch up. The helmet puts pressure on one side while allowing the side that was fused to catch up and even out. As she continues to grow and her brain pushes her skull outward things will just continue to improve...but for complete transformation it may take quite some time. Her brow bone on the affected side is going to be the last part that comes forward...and hopefully it will. This would be one reason for another surgery...but unless it is drastic, I will not be putting my daughter through anything more than what is necessary. So our prayers were answered and our fears were eased...we follow up with him again in 3 months. Alice is being scanned for her second helmet tomorrow...she should be receiving that in a few days. Her first one is really getting tight on her...so it is definitely time! Thanks again for everyone's support! Alice says Thank You :)
If you haven't checked out Alice's You Tube video here is the link
http://www.youtube.com/watch?v=k6e-4k18zLc
HEY! Not sure if you remember me from the cranio kids website. (GraceA there) I wanted to ask you some questions because it seems our docs say slightly different things. We went with Dr. Jimenez. We are 3 months into helmet therapy. Actually, what they tell me is 2nd surgeries are far less likely with the endo approach. They also say the brow bone is impossible to fix with helmet use and that corrects around age 10 when sinuses come in and force the brow out. Dr. J says he can put bone cement to round it our at that time if needed but no one has ever opted for that at their office. We just got helmet #2 this past Tuesday. I finally feel like we made some progress! Colton's head looks great and has really improved over the last month. So glad Alice is doing well! It is a tough road but I feel confident in the decision we made! Think of you often! Love coming here to see updates on little Alice:) Here is a newer publication from Dr. Jimenez. Thought you might like to see it if you haven't already. Interesting how the kids even look better after the helmet therapy is discontinued! http://thejns.org/doi/pdf/10.3171/2013.4.PEDS11191
ReplyDeleteGod Bless you!!