We all had a fun time at the NICU reunion at Medical City. Here is Dr. Treen, our neonatal doctor that didn't give up on finding a diagnosis for the babies.
Dorian flashing smiles while on my lap
The babies getting ready at the outpatient surgery center to get their tubes put in. Aren't they cute in their hospital gowns?
Ben and Alex in their Summer or Bust mobil. They had fun with it for about 2 days then just destroyed it flat so I'm glad I took a picture of it.
We had a good time and busy schedules in the month of June. Chris was busy going back and forth up north on business and to visit family/friends, Ben and Alex did swim classes, and Dorian and Wynn went to tons of doctor visits.
Wynn has discovered how fun it is to yank his hearing aids out, so we're working on that. Both babies had tubes put into their ears. Both babies, but especially Dorian, have very narrow ear canals and they both had a ton of fluid built up in their inner ear. They were champs in the outpatient surgery center that whole morning, they were great.
We met with our new pulmonary doctor, Dr. Galfand. Our visit with him was incredibly helpful. He doesn't look much older than Chris but he has actually had much experience working with children with lysosomal diseases, so he knows exactly the things we should be vigilant about in the coming years and explained to us many of the tough decisions we'll be faced with moving forward. It all boils down to how much invasive intervention we'll do once their airways begin to constrict. We realize they'll need help in the breathing department sooner or later but we're thankful it's not needed now. But this doctor also gave us many other valuable resources we'll need to consider in the future so it was comforting to know he has other patients who have gone through very similar progressions.
We went to Scottish Rite again to have the babies' overall ortho doc take a look at them, last time we saw him was a few months ago. The only thing he did say that was new is that Dorian's curved leg bones are quite severe and if they don't get better within the time a "normal" child would begin to walk then we'll need to surgically straighten the bone. No braces since that would not help at this stage. A bone so curved would not be able to sustain weight properly, so he would have a very difficult time learning how to walk.
Yesterday the babies saw Dr. Shiffman, our metabolic disease specialist. Nothing really new with this visit, just a standard update-the-doc visit. Interestingly he told us he discussed the babies with a renowned genetic expert that did much of the early groundbreaking studies on ML II in St. Louis recently, so it's good to know he keeps very current with anything that could be happening in the research field of this disorder.
Ben and Alex spent a few days in Nebraska with Chris's sister and parents last month. They had alot of fun visiting places, playing and hanging out. It was too quiet for me while they were gone. I think even the babies missed them and all their noise!
Our start of July has been great with a fun neighborhood 4th of July Festival... Ben and Alex had a blast playing with their friends at the lake and Dorian and Wynn were sweet as can be and lasted all the way til the last firework (nearly 3 hours! we were pleasantly surprised since they get so sweaty and uncomfortable outdoors normally. Yay!!).
Wishing you a fun July!!
