final appt with the doctor

We had out final appointment with Dr. Wirrell today. Unfortunately it wasn't quite the results we were hoping for. Jacob's MRI yesterday showed a small progression in the white brain matter and a slight change in brain size (smaller). This is how it works - there are cells in the brain and each cell is connected by a wire. The white brain matter insulates those wires to protect them from damage. When there is a white brain matter abnormality (like Jacob) the matter is deteriorating, or disappearing, and not protecting the wire. So the decreasing white matter causes the brain to shrink. Jacob's head circumference is normal, so the shrinkage has been very minimal, but enough to "cause concern", as the radiologist said. The spinal tap, CBC, liver panel and a bunch of other blood tests were normal. What this means is that it opens back up the possibility of him falling into that first category I posted about the other day... the Progressive Leukodystrophy. Jacob had another blood draw today. She is now testing for Krabbe's and Metachromatic Leukodystrophy. Don't look it up online. I just did and I had to close it before I even opened the first page. These are the two big diseases that need to be ruled out. She's also running an enzyme analysis. All these labs, in addition to the bigger ones from yesterday, will take 3-4 weeks to come back. So even though we've gotten some additional information here at Mayo, we do not have a diagnosis yet. It's frustrating, but I know we are getting closer. She wants us to do a few follow up tests when we get back home and those will rule out a few more things. Jacob has really been a trooper through this whole thing. All he wants to do is go swimming in the pool!

Jon and I are doing good. Just trying to make sense of all the information. It's hard leaving here and still not sure what's going on, but we know we're getting closer. We'll be heading out first thing tomorrow and will hit up the Mall of America, then on to the airport for our flight around 7:00.

Megan, Ryan and Dylan are now with my mom and dad. They are doing great. We got to video chat with them last night and this morning through Skype. It was so neat to see them, they felt so far away!

Jon, Jacob and I just want to say thank you to all our family and friends out there. We have felt your love, support and prayers all week and it truly has helped us get through this tough week. We are so blessed to be surrounding by such loving and caring people!

Ok, here come the tears again... I'm going to close this up and meet up with Jon and Jacob at the pool! I promised Jacob I'd go down the dolphin slide with him again before we left. I'll post a follow-up once we're back home on Sunday.