Monday, October 12, 2009

Short and Not So Sweet

First, I want to ask everybody for prayers for the family of Chris Klicka. Mr. K was a devout Christian, and wonderful Father, and a friend and defender of thousands of families in the homeschooling community. He worked for the Home School Legal Defense Association, and was always available for advice. He was called home tonight from complications of MS. Please keep his family in your prayers.

Second, we are heading out to Wisconsin again tonight (about 3 a.m.). This is another one of those big appointments. I am pretty sure that nothing is going to be decided today. We are seing a new neurologist that specializes in Muscular Distrophy, Mitochondrial disease, adn Metabolic disorders. We think we have narrowed things down to one of these areas - problem is, there are over 200 MD types to test for alone. Hopefully, he can narrow things down more.

Lil Man also has a lung CT to see exactly what kind of damage we are looking at, and lots of bloodwork to follow-up from the immune appointment. This is to check to see how his immune system reacted to a vaccination.

I am going to take a nap. I'll post more when we get home. I have more appointments from last week to tell you about.



Blogger Heather said...

Checking in on your little guy and praying for you as you head out.Thanks for the post on all the H1N1 stuff.Zoey of course will be getting it,as she is far enogh out from chemo to hold benefits.The rest of the crew will get it as well..I hadn't heard about using Tamiflu through spring though.I think I'll mention that to my doctor.A large percentage of his practice is special needs kids so I trust him like no other.Safe travels.Hoping you'll find answers and direction.

October 13, 2009 at 12:16 AM  
Blogger Beverly said...

praying all is well!

October 13, 2009 at 9:19 AM  
Blogger Lacey said...

Oh man, you put some major miles on your car for appointments, don't you:) Get some good sleep.

I think the first week of Jax trach will be my breakdown time. Then when we get home and he adjusts, life will go back to normal. I just hate to see him in pain, he doesn't understand. And I'll feel like I put him in pain.

October 13, 2009 at 10:00 AM  
Blogger sturpin said...

just got caught up with your blog - one good thing about hospital stays the blog caught up time. Your sweet little man has given you quite the medical education! Thanks for sharing so much. Thinking of y'all

October 25, 2009 at 9:06 PM  

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