Thursday, August 25, 2011
And I am so glad we didn't. We fell in love with her long before we knew that her intense hyperactivity, her obsessive compulsive tendencies, her unquenchable need for attention was clear to us. Maybe we would have pushed that button and ran if we had known!
And I think we may have found the syndrome that would explains most all of Maisy's medical complications...we have it narrowed down to two--either FG syndrome or Opitz GBBB. We are working on getting her out to Salt Lake City to be seen by the Dr. who indentified these syndromes and helped develop the genetic testing that helps to confirm the diagnosis. I have been able to correspond with Dr. Opitz after seeing a description of the symptoms of these syndromes. Although her case is quite severe, her symptoms fit the syndrome as if it were called "Maisy Syndrome." --Right down to her outgoing personality, willingness to please, obsessiveness and extreme need for attention!
And by the look on Maisy's face in that first picture, she looks loke she would have pushed that button if she could have..
at 9:19 AM
Before we began having some concern about the GVHD issues, Elijah received the OK to take a ride in the wagon out in the hall...after 39 days inside of the same 4 walls (besides a difficult attempt at a CT scan), this was an exciting day! First, we tried walking, but he very wretching and nauseous and so back we went. Later in the afternoon, when Mark and the kids arrived, we tried again...this time in style..a wagon that fit that both he and Maisy could ride in.
We are waiting to hear what that Doctors think today regarding the GVHD, but tomorrow he was already scheduled for a bone marrow biopsy and I think that that should tell us more. He will go down stairs (yeh!!! Elevators!!) to the Operating Room for the biopsy. This should also tell us whose cells are growing...the donors or his own. We will know the staus of engraftment more clearly after the results come back in a few days. It is a quick procedure and one that he has had a dozen or more times in his life. He can have some pain afterwards in his hip bone where they take the marrow from.
We are so at peace about it all....we have every reason to be...because there is NOTHING that can seperate us from the love of God. He has been so faithful to us through it all--in our struggles, our grief and our triumph---he will not stop now...I have decided not to rent space in my heart for fear to set up camp...it may stop by to visit every now and then...but my desire is that there be no room in my heart for fear because it will be so filled up with confidence in the Lord...God will do what is best for Elijah..and for us.
at 8:26 AM