Tuesday, July 30, 2013

Post Op-timism

Since we had to go back to Maryland for Alice's appointment we wanted to make a mini vacation out of it and decided to go to Baltimore and check out the Inner Harbor and the Aquarium. It had been years since Jason and I had been there and my mom came with us too! Cassidy and Trevor loved the aquarium, especially the dolphins. The rain forest area and the dolphins also caught Alice's eye. She fell asleep through most of it though. It was nice to do something as a family and have some fun after all the stress and worry we have been through. We have been completely consumed since getting Alice's diagnosis and we haven't been able to do much with the two older kids on their summer vacation. So we really enjoyed having some quality time with them. It's hard to believe that Alice is officially 6 months old now, my how the time has flown by!!

Alice sleeping through some of the aquarium

Alice wide awake at the dolphin show

By the water at the Inner Harbor

Aquarium photo

I am so glad that my mom was with us when we went to the post op and she was able to meet Dr Magge. My mom and dad were unable to be there for Alice's surgery since they were caring for our other two children but we were so grateful that my mother in law and her friend were able to be there for Alice's surgery. They traveled from NY to be there for us.

 Dr Suresh Magge - Alice's 2 week post op visit

Dr Magge came in and took measurements of her head and checked to make sure her helmet was fitting correctly. He said it needed to be adjusted so that there was a little more contact on the right side of her head, to essentially hold that side back and allow the other side to even out. (we had her helmet adjusted today) He thought she looked pretty good and also noticed that her facial structure had improved. With Unicoronal Craniosynostosis the face often deforms since one side of the skull cannot grow outward it affects the eye, nose, mouth, forehead and even the ear on the affected side...and it would have only gotten worse over the next few months if we would have had to wait for the larger more invasive surgery. We knew going into this endoscopic surgery that there was a higher possibility of Alice needing to have another surgery, which would be a very large ear to ear incision. By her having the endoscopic surgery at a later age than most babies, her odds of another surgery only increased. So I asked Dr Magge...if she needed another surgery, at what age would that be. He said that he feels optimistic that she may not need another surgery, he feels her results will be good since she was a mild case to begin with. Praise the lord! That is the best news I have heard in a long time.

Alice's new decals on her helmet

As we were leaving the office I patted myself on the back...I have never felt more proud of myself. I refused to accept that we had missed the window for the endoscopic surgery and I fought for her. I would have gone all the way to Texas to get the surgery if that's what we had to do but thankfully we found Dr Magge. All of the phone calls, emails, research and hard work finally paid off. I know it is not a guaranteed thing and that there is still a possibility of another surgery but hearing that Dr Magge is optimistic makes me feel great.  I sure hope he is right and that the helmet does what it needs to do and that we are on the other side of this Cranio-land journey!! I can't thank each of you enough for your prayers, it means the world to us. 

If you would please add my Grandmother to your prayer list I would appreciate it very much. She is in need of ongoing prayers....and my mom could use some prayers for her surgery tomorrow too. Thanks so much.