Baltimore Results

Bryce and I have arrived home! John and the kids picked us up at the airport last night. We stopped at Ihop for some dinner and made it home by about 8:30. Everyone was asleep in the car by the time we got home. It's good to be home, but wow, I forgot how crazy life is here. Hopefully a good sleep will mellow everyone out a bit!

We had a good trip to Baltimore. On Wednesday, we met with Dr. Raymond (pediatric neurologist and research specialist), Dr. Barananok (pediatric neurologist and studying geneticist), a visiting doctor from India, and 2 student doctors. They were amazing. Very kind and very thorough! They had done their homework and had gone through all of Bryce's records that they had received. Unfortunately, the MRI images had not yet arrived. This was probably the most important information they could have used, since so far, that is the only test that has come back abnormal! Anyway, they did what they could with the information that they had and I will have to work to get the MRI disks to them ASAP.

Dr. Raymond said that he is not yet willing to rule out some form of Leukodystrophy because Bryce's symptoms are very similar to those of the Leukodystrophies, although there are some pretty major differences as well. He said that there are two new disorders whose genes have been discovered recently, like in the last few months, that he wants to test Bryce for. That is what is nice about having the chance to come to a research hospital. They know of the latest information.

After the appointment, we went and had some blood and urine taken from Bryce to complete these tests as well as some others that he feels may give us some useful information. We had to go back on Thursday to finish up the testing. We should have results of these tests in 3-4 weeks. So, although we don't have any definite answers yet, I feel the trip was a useful one. The doctors here will now keep in touch with our neurologist in Arizona and hopefully together we will find answers if and when they become available.

Thank you all for your prayers, well wishes, and help with our other children so that this trip could be possible. We are so thankful for all the support we receive from our friends and family. It's what keeps us going!