The important part of our last week was the One-Year Day O' Visits, as I've been referring to it. Tuesday we spent all day, 9 am to 3 pm, at St. Louis Children's, seeing multiple people in 7 different visits. And no, there was not time for lunch, it was just one to the next. We're hard core.
First we saw the audiologists, where we went in the big walk-in soundproof box so that Braska could ignore pretty much every attempt to get her attention. She liked the lights but she wouldn't cooperate with the process as they wanted her to. So nothing conclusive there. I have no worry about her hearing. I can whisper across the room when I return from being out of the room for a while and she immediately responds and looks. She is the queen of selective hearing though. Great at ignoring, that one. They want to try again in 3 months.
Then it was back to the waiting room to wait for the ENT. Check out Miss Big Girl.
He was great. He held her for a few minutes while he talked to us, saying that way he wanted to get it in while she wasn't yelling at him.
When we went into the microscope room so that he could check out her ears and clean out the wax, she didn't have such a fun time.
The nurse held her head while I tried to console while holding her hands. She wasn't fooled one bit. Luckily, she recovers almost immediately when the irritating factor goes away. Our pediatrician hasn't ever been able to see her eardrums since they're so small, so it was nice to have someone actually be able to see them and verify that things are ok. He said she did have a bit of fluid in one, so we're going back in 3 months to have another look. He gave us the whole speech about the probability of tubes in her future. No surprise there.
Then it was downstairs to wait for the DS center appointment. Starting on the scale.... 14 lbs 12 oz! Slowly climbing...very slowly.
We first got to see the resident Dr. A, who was very nice.
The cool thing about the DS center is that they make everything so darn easy. Alison is the nurse practitioner who also handles the schedule coordination, and she has also been the one who has put in lots of extra time with me to solve some coding issues with our insurance that we've been working on since her six-month appointment. She schedules everything, all the specialists we need to see, in one day, all lined up. There's no way I could get that accomplished without a big ole' headache, so that's HUGE to me. One even got cancelled a couple months ago (she schedules them 6 months out) so she rearranged all the others to the new date.
Dr. G is the genetics/DS specialist that, with Alison, sees the DS center kids on Tuesdays. We didn't see her this time, but we had a good visit with Dr. A, the resident, and with Alison too.
It's kind of neat because for a few visits-- nutrition, cardio, and genetics-- we sit in the same room and they come to us. In between, Pop climbed up on the table with her to sneak a nap.
Alison said she thought Braska looked great, that she had "thrived" since her visit 6 months ago. The issues we brought up--teeth, spine, and nutrition--were dealt with and she got us hooked up with others when necessary. (We'll see the dentist there in a few months probably just to set a baseline and for a jaw evaluation. We'll see the nutritionist soon again. And the spine is fine...it was something brought up by the OT, concerned about how it protrudes when she sits up. Alison says it's a combo of her lack of muscle control--slouching--and partially due to her just plain being so darn skinny.)
Dr. J, cardiologist, came in and checked her out. He said everything sounded ok. He confirmed that we didn't need to do premed, meaning that we don't have to premedicate her for dental things, etc. This is new with the cardio guidelines, as up til about 8 months ago, it was still protocol to do premed in this type of case. He also said he didn't think we needed to worry about the RSV injections, Synagis, this year. We didn't have them last year either as she was too far into the season when we had the chance. Unfortunately, our pediatrician's staff (temps) sent in the preauthorization incorrectly so the insurance denied the series of injections this year. I could appeal, and I could win, but it's a very tedious process, so I thought I'd see what the docs thought before I went through it. Dr. J said, of course, that she could get RSV and could get quite sick, but it would not be life-threatening like it would have been before repair of the AV Canal. And since she has shown no symptoms of continuing issues after the repair, and since she's not in day care, doesn't go to the nursery at church, and is rarely around other little ones in close proximity that she isn't considered high risk. Since we did the super-careful-winter-protective-procedures last year, we'll just reinstitute those and save her the pain of the shots. I'm actually glad we can skip them.
Dr. J sent us for an echo to see how she's looking in there. It went well, with help from Pop and me trying to keep the hands busy and away from those appealing cords and cables. Dr. J came back after and said she's in good shape. No problems at all. Love those reports!
Then it was off to the eye center and Dr. R. She got dilated and was pretty good for the exam. Her nystagmus (wiggly eye) is much better, but her esotropia (crossing inward) has increased, as has her farsightedness, so we got the dreaded prescription for glasses. It's dreaded by me, anyway. I can't imagine how we'll keep them on. And I'm a little sad to put something in front of that little face, but I'll get over it. I'm working on finding frames. We go back to Dr. R in 3 months.
And finally, it was to the lab for thyroid and CBC. She's a champ, and the phlebotomists there are SO great. They are quick! And she's usually such a hard stick. Got the results for this today from Alison, and everything's peachy. Yay!
All in all it was a good day. She lasted pretty well through all the prodding, poking, dressing, and undressing. It was SO helpful that M was able to be there to help out.
A week from today we go back to St. Louis for follow-up on her g-button and a swallow study. Seriously, I don't know why I don't just move back...