We made a couple trips back to the hospital recently. It feels like it's been a long time. We have been having some trouble with Julia's nightly cecostomy flushes not working. After her urology appointment and several calls to her GI nurse, Dr. Fortunato's office called and said he wanted to see us as soon as possible. I wasn't really sure what his possible solutions might be and decided not to think about it.
Julia had such a treat when we arrived at the hospital. We stopped in to see Ms. Betsey and Julia had the art table all to herself. Ms. Betsey and Ms. Stacy, AND art- what could be better? It was great to catch up and hang out with two of our favorite people.
Julia made this really amazing fish with foil, sharpies, watercolors, salt, and water...
After lunch, we headed to the peds clinic. Dr. Fortunato had good news. He said he is not overly concerned by this setback. It happens. Overall he is pleased that she is adjusting so well to this new life. He said his 5 and 6 year old girls are his best cecostomy patients right now. He is going to keep her on the doubled dose for the next six months. If we start to have more than one night a week that the procedure fails, then we will switch to a different solution- Golytely.
He was very excited that she has been potty trained over the summer and was happy with how far she has come in the past year. We paused to celebrate progress. Still not where we hope to be, but progress.
We also had another Lego Therapy Night at the hospital. This has become something we all look forward to every month. It is so much fun and a great opportunity to connect with our friends- old and new.
Carter and Vinny were completely in their element- legos, Star Wars, and friends. They arranged to wear their new matching shirts to the event...
Julia's creation- a swimming pool and fountain...
It's great to see everyone get in on the fun- adults and kids alike.
And when the one of the Master Builders is a college age guy, there will be light saber duels. He built one for both the boys. Let the battles begin!
It was a great night with some fun and sweet fellowship.
Julia had such a treat when we arrived at the hospital. We stopped in to see Ms. Betsey and Julia had the art table all to herself. Ms. Betsey and Ms. Stacy, AND art- what could be better? It was great to catch up and hang out with two of our favorite people.
We also had another Lego Therapy Night at the hospital. This has become something we all look forward to every month. It is so much fun and a great opportunity to connect with our friends- old and new.
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