We are here at the NIH and doing ok. We are all very tired but doing good. Collin is being such a trooper. The first couple of days were very hard for him but he did better today. He is averaging around four doctors appointments a day as well as tests that have been ordered. Our day starts at the hospital at 9am and today we did not get back to the children's Inn (it is like a Ronald MC Donald house) until 4:30. We are getting good news and not so good news. I will update more about that latter. Regan is having a blast playing with Aunt Nancy while we are at the hospital. Today they went to the zoo. We have had chances to go into DC and have a little fun as well. Please continue to keep our little man in your prayers. I am constantly amazed at his strength and forgiveness. After going through so many things he will still blow them kisses while we are walking out the door. He truly has the love of Christ in his heart. He does not understand why these things are being done to him yet he can forgive them anyways. I hope that some day I can be as incredibly strong, loving, and forgiving as my sweet baby boy.
We are VERY excited that tomorrow we will be able to meet another family that has a child with TTD!!!!!!!!!!!! We have not EVER met anyone or seen anyone else with this illness since it is so rare. So, this opportunity is just indescribable!!!!
Thank you all for your support we feel it!!
Nancy, I don't know when or if you will read this but THANK YOU!! Thank you from the bottom of my heart for all that you are doing out here to help us. You dropped your work, husband, and kids (wink) to be with us. I can not even begin to describe in words how comforting it is to know that I don't have to worry about Regan while we are taking Care of Collin. I feel so lucky to have such an amazing and supportive sister!!! I LOVE YOU!!! Thank you!!!!!