August 2010

Summer flew by in a flash... can't believe Ben and Alex are already in their 2nd week of 1st grade, our swimming pool is finally done (kinda), and the babies will be turning 2 just around the corner! (Oct. 27th)

Ben and Alex are once again enjoying football, Chris is the head coach. The Colts are thus far 2-0, and we have some really fast kids on the team who do a pretty good job of listening so we may have a good chance of going far in the play-offs this year. The big boys are in play-date heaven... now that our pool is in we randomly bring home at least 1-2 kids with us everyday after school to swim. We never keep the home phone outside so if you need to get a hold of us, send over one of those message planes cuz now we basically live outside. Even the babies like hanging out there now.

The babies will be getting new tubes in their ears sometime this fall, we first need to clear it with our cardiologist to make sure they are OK for undergoing surgery. Our cardiologist, Dr. Wright, retired last month :( so we are now moved over to another cardiologist who took over her patient load. We might also get adjustments made to Wynn's hearing aids once he's under for his tubes procedure. Our pulmonologist also needs to chime in about this because since their airways are restricted, we will eventually run into the problem of not being able to intubate them during anesthesia.

Next month the babies will be wearing braces on their legs to help their muscles retain the position they are supposed to be in (not little ballerinas like they like to do now), and to help them gain stability when practicing standing. The next goal after wearing braces for 6-8 hours a day for months is eventually get them into standers (a thing that straps them in by the chest, waist and legs) so they can get used to bearing weight and gaining balance in the standing position. That'll help them in many ways.

First day of School--- 1st Grade!!

Our speech therapist informed me she was going to put in a request for an assisted communication device for the babies. She feels their fine motor skills may not catch up to allow them to do sign language, but she wants to wait til January to see if their work in occupational therapy helps improve those hand movements. If not, she is confident that their cognitive responses have proven that they can learn very well how to use an assisted communication device. She has worked on them for weeks doing "tests" with picture flashcards of our family... she says "where is mommy?" or "where is Ben?" and the babies these past couple of weeks have scored 100% every time she tests them (they'll reach over to the answer in Wynn's case, or stare at the correct flashcard in Dori's case), so she concludes that cognitively they are doing great... well enough to express choices so she says they are ready for this next step. I was so excited when she explained it to me that I started crying! It's a neat little machine with buttons on it that they can press when they want to express something like a bottle, a diaper, a sad face, a toy, etc. Here is a picture of one I found when I googled...

Assisted Communication Device: This one would be for someone older, I don't think the babies would be asking for a cup of Joe, or a boom box. Or maybe they would (?) I guess we've never asked them

Wynn has been having a little hard time breating (he sounds like Darth Vader), so we're taking him into the pulmonologist tomorrow to see what's up. Other than that, we're all enjoying the slightly cooler weather (cooler is mid-lower 90's for us), the fun pool to splash around in, and the new friends the boys are making. Stay tuned, we'll look forward to posting pics once the babies get their leg braces.