Friday, July 1, 2011

friday in cleveland

Today we saw about 12 different drs. None of them had answers. They all wanted more tests. They want more information on Justin. He is showing little pieces of lots of different diseases....but none of the dots are connecting right now.

Here are some things we heard today:
Mixed Connective Tissue Disease
Steroid Myopathy any of those sound nice to you?
Not to me.
Still no clear diagnosis.

The CT scan did come back and did not show any progression in his fibrosis. Praise God for that. They will continue to keep an eye on that. His heart is GOOD.

They talked about getting another muscle biopsy. An EMG (i dont know what that is...but they said it will hurt) and they will also probably do his chemo while he is here. Hopefully all of this will take place tomorrow...we thought it would happen today.

This place is so busy...all day doctors walking around...nurses...people everywhere.
Last night I walked back to the hotel and everything was empty. This busy city within a city was completely quiet. They have this creepy arabic disney sounding music that plays down the hallways. I am not sure that I have ever felt that alone in my life. Three different people have asked me if I was here to see my mom or dad. Nope. I am here with my 28 year old husband.

I am thankful for this sweet time with Justin though. I cannot think of any other reason we could get this much quality time. We are making the best of it...thats for sure. He is lucky he is so cute. I love this man so so so much. If you are wondering if he is still being high maintenance with his eating..the answer is YES! Whew! He wears me out!! He eats CONSTANTLY! Thank goodness Melissa told me about the yummy restaurant downstairs.

We are anxious and a little frustrated tonight. Where is the info on the 16 vials of blood they took yesterday? Why have they not redone his biopsy? Yuck...I just dont want him to have to have that done at all. Why does his roommate make such weird noises? Is God teaching us patience? I thought we had that lesson when we had our 3rd kid :)

I miss my little boys.
Bryce and Justin have done their devotional over the phone all 3 days that we have been here. Bryce had too much fun at the river...shooting at deer with a bb gun...collecting tadpoles...kayaking and swimming in the river...teaching his little baby brothers all about the river life!!
I miss Bryce's questions....Brody's giggle and Braxton's chubby smile...BUT I cannot think of anywhere else I would rather be than right here with the love of my life.

A shout out to all of our praying friends. You guys are pretty crazy awesome.
We love all of your guts.
Can't wait to share some good news...I just know it is coming.

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