Wednesday, February 1, 2012

Five Steps Forward.... and Only One Back!

That's the silver lining our GI doc gave us today.

Hey...I'll take it! For so long we've done the one step forward and two steps back dance and quite frankly, I just don't dance! Progress is slow, but progress none the least. To date Joshua has gone FIVE months without a central line! No TPN. No supplemental IV fluids. No line infections.

A few weeks ago he did test positive for C diff. The dreaded bug of all Short Gut kiddos.
He may fight off this bacteria for months or years. We're praying it clears quickly cause it's a booger for anyone, much less one with chronic diarrhea as it is.

On top of this, he's still showing evidence of very poor motility, bacterial overgrowth and malabsorption. What's new? BUT.....

GI is happy with his labs and overall health. Absolutely NO signs of dehydration! Woo Hoo! What a wonderful thing this is! Hydration has been the center of our world for almost 6 years. His body, even though technically it's not doing what it should be doing in the GI tract, has figured out a way to maintain it's electrolyte levels!!! Praise God!

We do supplement electrolytes through the g-button, but not nearly as much as it appears he loses. He's always been this tricky chemistry set. But little by little, things are balancing out.

Now, on to weight gain...
We'll be meeting with endocrinology first of March and I'm praying we'll start growth hormone therapy soon. It means a long series of daily shots, but this is our window of opportunity to do something about his size while we still can. Joshua has to undergo a few tests to show that the hormones will in fact benefit him. We'll know in a month or so.

All in all, a great report from clinic!


  1. oh dana, i'm so thrilled to read this! and i can't believe he's six years old. where has the time gone!?

    glad i get to see you once a month now....and i look forward to hearing about all the good news yet to come.

    you're an awesome mommy!

  2. Congratz! Joshua! Way to go! So proud of you. I have been hearing things about you and know you are a fighter. My prayers go to you that you continue doing well. I have know your Dad since he was about 6yrs old. He has always been my friend. I know you will continue to show everyone that you can do it. So hang in there! I love you and your family! <3 Granmajo