After a long week of specialists appointments for Isabelle in Phoenix, we're back home. We crammed in 8 appointments in 4 days and a whole lot of driving. Isabelle is pretty exhausted and so am I and I'm grateful for Eli's cousin Hannah, who keep him occupied while I spend the day driving to appointments. I think the biggest disappointment of the trip was discovering that moving all of her specialists to Tucson really isn't an option. What the doctors explained to me is since Phoenix has 2 major Children's Hospitals in the area, there is a huge selection of pediatric specialists working there and available - people come from all over the state to go to these children's hospital, so pediatric specialists who go there know that they will have a large client base. There is no children's hospital in Tuscon and so there isn't as many pediatric specialists willing to go there. The few that are in Tucson are either completely booked and scheduling out as far as Dec. of 2012 (yes, I had 1 secretary tell me should could see Isabelle Dec. of 2012) or they aren't taking new patients are are referring people to Phoenix. Moral of the story, it looks like we're driving to Mesa (3 hours 1 way) for all of her specialist appointments and Tucson (1 1/2 hours 1 way) 1-3 times a week for all of her therapy. I feel like the theme song of my life should be "On the Road Again". Most of the lyrics don't actually apply, just the one phrase - on the road again.
The good news is that the majority of her specialists are really pleased with how she is doing and are ready to move her to biannual visits and just keep monitoring her, which is wonderful. Opthamology was the only one who needed to see her earlier, which I already expected. We'll be going back in Sept. to Phoenix Children's Hosp. for eye surgery again and then back monthly for him to monitor the progress. So at this point we'll be heading back to Mesa about once a month for the next six months. Hopefully after that we'll really be on a every 6 month schedule.
Although I didn't take any pictures this week, people have been asking what Isabelle's braces look like, so here's a few I snapped quickly to kind of give you an idea. They aren't too big and mostly covered by the socks that go with them. It's the enormous shoes that come with them that are probably what is hardest for all of us to adjust too. They are big, bulky, heavy and make it much harder for her to move. But her developmental pediatrician watched her move without them this week and assured me they really are necessary and will save her a lot of muscle damage.
