Tuesday, September 24, 2013

Alice is 2 months Post Op!

Alice had her 2 month post op in Maryland yesterday. Of course since we had to travel we made a couple of stops while we were up that way. We took the kids to the Air and Space Museum and the Natural History Museum in Washington DC, which is only about 20 minutes from the office in Rockville, MD. It was a beautiful day and we had a great time.

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

Friday, September 6, 2013

Life in a Helmet

So...the first few weeks in the helmet were a little rough for Alice and a little hard for me as well. She had a hard time sleeping...I had a hard time adjusting. I would plan her hour out of the helmet around our outings, sometimes pushing that hour to two hours...which was only hurting her in the fact that she will be in the helmet for a longer time period. I had children ask me "what's wrong with her"...and grown ups ask me what the helmet was for...others come up to me telling me that their child had to wear a helmet too (but for different reasons, for positioning/flattening) and even ran into someone who's child has Craniosynostosis. I ordered decals for her helmet and starting using her helmet as a billboard to educate others. The majority of people are too scared to ask and will just tell us how cute she is but just don't know how to ask why she is wearing the helmet. So I figured by putting the blog info and a facebook Alice in Cranioland logo on there, people in this day in age could just pull it up and find out. Lately I have just been telling people as soon as they approach us, which is pretty often when we are out. I have enjoyed educating people and giving them a summary of what Craniosynostosis is and the options available for treatment and how we had to push for her endoscopic surgery. The reaction to what I tell them is heart warming...it restores my faith in humanity...seeing their genuine concern and how happy they are that she was able to get the less invasive surgery. I see pregnant women look at her and her helmet and hope that it educates them so they will look at their child's head and not be naive as I was, thinking it was from childbirth. If I had only known, Alice could have been helped sooner, which wouldn't have affected her facial structure very much and we wouldn't have had to "fight" for the endoscopic surgery since she missed the typical window for that, which is 3 months old or younger. I am so grateful and hopeful that she is on the other side of this. At Alice's last helmet adjustment the doctor thought she looked great already and felt that in his opinion she may not be in the helmet as long as originally stated by the neuro doctor. Overall, Alice has adapted amazingly well to the helmet. It seems like I was worried for no reason. We will see what he says in a couple weeks when we head back to Maryland for another post op. Thanks so much for all of your support for Alice...it really means alot to us. We will update the blog after we see Dr Magge.

Almost 7 weeks into helmet therapy