This morning I was jerked from sleep by my phone ringing. It was the pediatric office calling us with the results of AJ's latest lab work. Her second set came back normal, so the results from last Thursday that were off were due to a lab error. Since the values really had us scratching our heads, we're relieved.
We also got our appointment with the pediatric neurosurgeon. We will make the 6 hour journey next Wednesday. I've already started my list of questions, and I think of more every 5 minutes it seems like. Her appointment is, thankfully, in a place where we will have some family to lean on. We are already thankful for their offer of a place to stay, no matter how long we will need it. The last thing we want to do when facing this is sit in a cold hotel room by ourselves.
Today was better. We feel better knowing that it won't be long before we have some answers. We were dreading a long wait before the appointment. We're armed with information, and feel like we have a pretty good grasp on what we are facing. We've began exploring our options on our own, and have already prepared on where we will go for a second opinion, if necessary.
One of the places I've found for information and guidance is www.cappskids.org, which is an excellent source of information and support from families who have already experienced the diagnosis, treatments, and endless appointments for follow up, as well as those who have just been given the diagnosis. It helps to read about their experiences, and see how their children are thriving after treatment.
To everyone who has sent up prayers and offered words of support and encouragement...thank you. Words can not express how much the support of our family and friends means to us right now. We KNOW this is going to be a difficult journey.
I had a cute, fun post planned before we were introduced to the world of craniosynostosis. I will finish it and have it posted soon!
Wednesday, June 23, 2010
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