The journey of life is filled with curves, bumps, and straight roads. Our journey has been interesting and for the last five years, our road has been filled with surprises and challenges. Please join us on this journey.

Friday, April 20, 2007

How many?


It just seems that Javad can't get a break. Over a week ago he had been showing signs that he may be getting sick. He was running a fever, was pale, and having a difficult time breathing. I had to go to school and pcik him up early, he scared them so much. I took Javad to the doctor on friday, we took a sputum sample and adjusted his vent settings. On Monday, he stll wasn't looking very well and we thought we may have to admit him. The sputum sample revealed that Javad had strep and a heavy growth of pseudomonas. We began treating wiht Cipro and tobramycin. Needless to say, almost a week later, he is not really better. Well, if we want to look at the little things, he is better. He is still having issues with running a fever, is on the vent all the time, but not on oxygen. He is pretty crabby and doesn't want anyone to touch him. Yesterday I took him in again and Dr. McQuestin says he probably has a virus on top of it all. Can the kids get a break?

Friday, April 06, 2007

The Journey to Boston


So, here we are in Boston. If you haven't been keeping up, go to my blog at (Driving on the highway.) I have come to Boston to attend The Joshua Frase Foundation Muscle Dream Team Gala. It has been an incredible event! Here's what I have learned:

1. The Joshua Frase Foundation has raised millions of dollars for research for Congenital Myopathies (of which Myotubular Myopathy is one!)

2. The other families that I met here (Connie Guinn, Benjamin's mom, Pat and Sarah Foye, Adam's parents, Scott and Betsy Grant, Kyle's parents, Maria Beasley, Logan's mom, Paul and Alison Frase, Joshua's parents, and many others) are fiercely committed to finding a cure for these myopathies.

3. Dr. Alan Beggs (see photo of lab above!) and his group of researchers are incredibly committed to the research they are doing. I have never met a finer group of scientists who are personally invested in finding a cure. Amazing since their interaction with these boys is only through photos, etc. They expressed frustration that science is not moving fast enough for them! Amazing!

4. The response I felt for the Buddy program and the other things I am doing with Javad's Place was incredible and affirming! I believe that the program is going to do great things!

It has been an amazing experience so far! I am already planning for next year, where I will have to suffer through being treated like a queen for a weekend...it's hard having doors opened for you and being called Ms. Guinn all weekend (that's another story all together!) Oh yeah..and sleeing on a cloud-like bed that has been turned down for you! Yep...need maids at home. That's on my new list of to-do!

Sunday, April 01, 2007

Vacation

We have returned from our family vacation...for a total update, fly on over to my blog (www.drivingonthehighway.blogspot.com.) You'll have all the scoop and all the flavor! :)

Javad