Well, after 9 appointments in under two weeks time, besides her four therapies per week, we were certainly kept busy, busy, busy! But we had some great news, too, so--worth it? Yep!
Of course, Maddy got her casts off, and her braces made and fitted (and re-fitted, which unfortunately caused her first pressure sore. Yes, that made be sick in my stomach. Unfortunately, I hear it's not uncommon when braces are first adjusted, and since Maddy can't feel anything from at least her waist down, there's no way for her to tell me. Needless to say, we're watching the sore like a hawk, and it is healing, although it does take a while. And this is turning into the longest parenthetical statement in my blogging history.).
We also visited the ENT doctor. Now that the (turquoise) tubes are in the adorable little ears, he wants to go ahead with an ABR (Auditory Brainstem Response) test to make sure that she has no hearing loss. With the tubes, we're definitely not seeing any signs of it, but since she isn't babbling much at all yet, they'd like to make sure that we're not missing anything.
The neurologist simply bumped her Keppra (seizure medication) to match her weight. They will do another EEG when she's been on the medicine for two years.
The pulmonologist has scheduled another polysomnogram (sleep study). I don't have a lot of hope for weaning her off oxygen since her SATs continue to drop when she's off O2, but at least we'll be able to make sure that things haven't gotten worse.
Now for some really good news!
First--On ultrasound, Maddy's kidneys (I should say kidney since her kidneys are fused into one horseshoe kidney!) are 75% better since her got her vesicostomy! The vesicostomy was needed because the reflux to her kidneys was severe enough that it was causing hydronephrosis. The vesicostomy is an attempt to take some of the pressure off the kidneys. We assume that she still has the reflux, but now there isn't as much to reflux into the kidneys, since her bladder is constantly draining into her diaper (THAT'S RIGHT! NO MORE CATHING!!!) Dr. Cain was hoping for 50% better one month out from the surgery, so 75% is awesome! He expects that by her next visit her kidneys will not be swollen at all.
Second--Madeline's cell function tests came back from Mayo Clinic. Due to her DiGeorge Syndrome, her T-cells have been just a bit low, not enough to cause major concern. Dr. Belcher tested the cell function, to see how they fight off infection, and they are functioning at 100%. This means that Madeline most likely doesn't have the terribly suppressed immune system common in most DiGeorge Syndrome kids. And since she doesn't have the heart problems associated with DiGeorge, her issue is "only" the spina bifida. We're still trying to keep Maddy away from anything nasty, but this was very good news to say the least.
I must get back to my schoolwork....Only 9 more days to go and I'm done, Done, DONE!!