Saturday, June 19, 2010

SERVE week

Before I talk about SERVE, our doctor emailed last weekend to say that the protocol is going well. It has been returned for revisions which was expected. The revisions have been made, and it is going back for review. Our transplant doctor realistically thinks it will be September before we can begin the procedure. This is OK. It gives them more time to find a real match for the girls. I've been asked many times if a donor has been found. No. This is still the hope. In the event that a donor match isn't found, 4 cord bloods have been located at present. They cannot be purchased until we are ready to use them, so then it becomes a question of whether they will still be available. So that is still a very ongoing prayer: that the timing of the match, whether cord or donor, be available when it is time. Another prayer is that the girls' health hold out until that time. We are not worried or anxious, and still trust that He who knows us and our needs will fulfil them in His perfect timing. Karly's health held out very well over the SERVE week. She had an awesome time and loved "her" girls. She is able to run a bit, go up stairs, and she is just so cute. I love being able to chase her down the hallway, and she playfully runs away. Good therapy! We leave for NIH on Monday night; the schedule is set. We are looking for good numbers in blood and on the scale. We are looking for answers about her food allergies, her hearing loss, and her vision. Kelsey will be a patient for Dermatology Grand Rounds where doctors from around the world attend, discuss, and learn. I don't know if this will help us, but hopefully it will help others. As always, we thank everyone for their prayers, support, and love.