Sunday, July 17, 2011

Short version of a long story & our lives changing directions--yet again!

I have soooo very much information to share after our recent trip and going to the ULF conference. I will have to wait until we are home and I have more time to give the whole story. But for now...a few quick updates--We've met new amazing friends and supporters, lots of doctors and have a whole lot more information and opportunities for Ryder!!!!!

Some very recent discoveries and changes in short version---
1. I am concerned about Noah being affected as well. It may not be the case--but learned that his skin coloring may be a sign. We've always called him our beach baby and he gets so many compliments on his skin tone---well of course---he is so gorgeous!!!!! It may be a sign of Addison's disease. The whole family needs to be tested.

2. I have a lot of symptoms as a possible carrier.....fatigue, bladder issues, migraines, okay--I'm always tripping and stubbing my toes--so a little clumsy!!I get dizzy and have blurred vision and lower back pain often. It could be the many other diagnoses I have--or from stress--but further evaluation will be done. Symptoms often appear in a woman's 30's....hmmm

3. Ryder has pulled out his NG tube and it is really irritating his skin and obviously uncomfortable for him. We will be getting a G-tube or Mic-key tube (don't know the difference yet?) when we get home...which means back to the hospital for us---uugh. NG tubes are meant for short term. In reality, Ry will not regain swallowing skills and will always need asistance.

4. I will not be attending nursing school as planned. My kids need me now and that's more important. I will go back to school---even if I'm 80--to be a nurse:) I guess sometimes you have to put your own dreams on the back burner when you are a mama! This choice is partly for Ry and his medical needs and because I just learned both boys got excepted into Eduprize (charter school w/very long waiting list---w/focus on science/hands on curriculum---just awesome all around!!!!) They start this Thursday--if we get home in time from our trip!!! We are supposed to get home on Wednesday, but flying stand-by. Hail damaged some Frontier plans (which we are flying) and they canceled many flights. The school will accommodate us since we had a 4 day notice of acceptance!

5. I'd like to speak with my side of the family more about medical history (so expect a call or visit;) Al ports syndrome sounds a lot like advancement of a leukodystrophy--without cerebral disease (which happens) Kidney issues (overall organ functioning is affected in leuko) hearing, vision, walking and so on. It might not be anything--but interesting to learn more about.

6. I need help finding a pro bono lawyer, starting fundraisers (will be going to Kennedy Krieger or Mayo Clinic often) and referrals for endocrinologist (understanding leukodystrophy) and physiologist.

I think those are the top updates for now---if this is the short version-- the whole story may be a novel (haha)

****ironic observation--when I run spell check leukodystrophy comes up as catastrophy (that it sure is!!!!)