Tuesday, June 4, 2013

Tuesday, June 4th

We had a busy weekend at home with Theo.  Busy, of course, means we had a picnic in the park....

cut Theo's hair...

welcomed Grandma into town for a couple of nights, went on walks, and just loved being a family.

Team Super Theo!
In San Francisco, a group of family and friends participated in the Kidney Walk, and, thanks to the incredible generosity of a lot of you, raised almost $10,000 for kidney awareness and research.  We feel honored that they would walk in Theo's honor, and that many of you would give in Theo's honor.  Thank you, from the bottom of our hearts.

Away from the weekend, things have been a little bit crazy.
- We are still waiting for Dubya to wake up.  Theo went in for dialysis on Monday, and his labs were slightly encouraging.  We pray for continued (and significant) progress.   He has labs again tomorrow morning.
- We are doing our best to control Theo's withdrawal symptoms.  Withdrawal is a tough thing to watch; we are taking the wean more slowly than expected in order to minimize his pain, tremors, and fevers.
- Yesterday, Theo's GJ-tube came out.  If it were just a g-tube, we could replace it ourselves.  But, the GJ-tube has to be placed by a radiologist (since a portion extends into his small intestine), so we spent several hours yesterday in the Emergency room before Theo was admitted back to the hospital ("homespital") for the night. ("Worst night ever," in Nick's words.  The withdrawal medications were all late, which left us with a possessed child.) Theo's GJ-tube was replaced this morning, and we were home by noon. Unfortunately, we think the tube may have an issue, so may have to take him back in tomorrow for it to be examined.

Furniture cruising with Dad
In positive news, Theo has made great strides in getting back his strength in the last week.  He can sit on his own (when we put him in a sitting position), and he'll stand up and hold onto furniture.

Now, we are eager for a stretch of great progress (without any more complications) on the medical front.  The last couple of days have been a bit frustrating.  Theo is sick of the hospital, and we hope that he can avoid spending much more time there.

As always, THANK YOU for your prayers.  Have a wonderful day!

1 comment:

  1. Hi guys- its Dr JZ :) Everyone misses sweet Theo, but we're glad he's finally home. I'm so happy y'all have a blog so I can keep up with how he's doing even from Boston. Even though I was only his doctor a couple of days, I grew so attached to him (we all did!). You have such a special little man. I'm praying for him and his recovery and for Dubya to get it together. :)