Friday, June 29, 2012

Gastroschisis Awareness Day

Just Around the Corner... With Gastroschisis Awareness Day a little over a month away, please take the time to watch our video. You may come away with it with a better understanding of this birth defect and hopefully a blessing of encouragement. If these kids have taught us anything, it's to keep a strong faith in God and an unstoppable determination. May we all have the GUTS that these kids have!

Saturday, June 16, 2012

Battling Summer with One Tube Behind His Back!

So far this summer Joshua has done remarkably well. I'm amazed at how his little body is copy through heat and humidity. In years past I've dreaded June. It never failed to bring with it dehydration and all expense paid stays at the local children's hospital! But, we've been to the beach, swam in the pool and played outside without any repercussions. THIS IS HUGE! I keep saying that, but I'm not sure just how many people "get it." THIS IS HUGE. August will make one whole year that Joshua has been off of tpn. If you'll remember he had a booger of a line infection that wouldn't clear and the docs had to pull the line. We experimented with him being off that support and sure enough, he did great! We've continued to supplement his electrolytes four times a day (which certainly does help tremendously) however, I'm wondering if the steroid shots we started Joshua on in May are playing any part in this? Whatever it is, I'm seeing a whole new boy and he won't be stopped! Watch out world! Praying that we will ride this wave through August!

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!