Shriner's Story

Here is the beautiful girl with her beautiful Aunt Alie. You can see she is sporting her new splints. Grandma Shafer made her the pink covers to go over them so that she wouldn't scratch herself. I also had to include a pic from Eli's recent fireman 3rd birthday party! It was so fun! The kids all enjoyed climbing on the fire truck and looking around the fire station. Eli's P-pa was our tour guide and host. Thanks Tulsa Fire Department Station 9!

I wanted to share a story about our last visit to Shriner's hospital in Shreveport. I meant to include it in the first post, but it was already so long just getting the basic information out there. As I expressed before we were stunned by the sudden news that Emmarie most likely had a genetic condition. It was my worst fear all along. After our brief visit with Dr. Chen we had to wait awhile before the OT/PT department was ready for her to make the new hand splints. I had not been able to stop crying since we got the news, and rather than sit in the waiting room and make everyone uncomfortable, I decided to take Em on a walk around the building. As we were walking we passed a young boy, maybe around 10 or so, walking with a walker. He looked at me and asked "what's wrong with your baby?" Kids have a way of expressing such innocent honesty. I mean of course there must be something wrong with my baby, why else would we be there? I thought briefly about what to say and decided to go with "she's just perfect." He seemed a bit confused, as he could tell I had been crying, so he replied with "do you have allergies or something?" That immediately made me laugh! Here was this precious boy, obviously struggling with something most 10 year olds don't have to face, and he was happy and worried about my possible allergy problems. I wanted to reach out and hug him, but I didn't. Kids are so resilient and don't waste time feeling sorry for themselves. He really inspired me to stop feeling sorry for myself and get tough. I stopped the doomsday dialogue in my head right then and there. There are so many kids out there dealing with things far worse than Emmarie will ever face, and most of them are smiling and happy anyway. What a lesson for all of us!

On another note, Emmarie's physical therapist came today and looked her over more closely, since we now know there are other possible issues besides just her hand deformities. I have always known that she had very narrow shoulders and have been concerned about that. She discovered that Emmarie is very weak in her shoulders, especially on the left side. We now have new exercises to do with her to try and strengthen those muscles. We have an appointment with Dr. Keyser, a geneticist here in town, for next tuesday. We are hoping to get some more answers then and to get the genetic testing underway. I will update again after the appointment. Happy Easter to everyone! I know this year I will be celebrating the miracle of the Risen Christ even more than before. God Bless!