Talk about a lot of info. I thought yesterday was bad (in a good way!).
This morning Lori moved up our appointment and came in early so that we could go to see Liz for aquatic PT afterward. B had a good session with Lori, though she was a bit more fidgety because we didn’t have the time to get her as “prepped” with the sensory and active/motor things prior to starting the “work.” But she did really well. We did several video clips of her session specifically so that Lori can use them in her upcoming presentation, too!
Her plan is a little different than we expected going in since there was more background work that needs to be done than Lori initially thought would be the case. I’d sent videos and lots of info before we got here, but the sensory issues weren’t clear on those particular clips, as well as her posture/alignment issues with the core strength. So we kind of had to back up and start closer to the beginning than we’d thought. That’s ok, and it’s good that we now know, but it’s also a little hard to consider how much we need to do.
She asked if we could add another visit in tomorrow afternoon, since we don’t fly out til Thursday morning, and I agreed, of course. With all these additional appointments, M and I just have taken the “get what we can while we’re here” approach, and we’ll move money around or work extra to pay for it. No other choice with that really. She’s worth it, but it’s reality that these things cost money. So we’ll see her at 11a and at 3p tomorrow, with the 3pm being the session where I’m doing the plan with B and Lori’s making sure I have it all down. No pressure.
After Lori’s, we hit the hotel to grab B’s swim stuff on the way to another hotel where the therapist does her sessions in the pool. Liz was awesome. She worked B HARD! Again, I got video of most all of the session, and she explained so much. I’m thankful for the video because there’s no WAY I would remember all this otherwise… that’s why I’m documenting here, too.
We raced out of there, back to the hotel for a quick lunch, then north to New Haven via Hwy 15, a lovely scenic little road. I’m still fascinated by the different road/highway patterns, but it was very pretty. We had a heck of a time finding Yale-New Haven Children’s but managed to get there eventually. If you StL peeps think downtown is frustrating with the one-way streets and congestion, it’s never bothered me much, but it’s gonna look like cake to me after all this. StL feels SO spread out after being up here.
Dr. K was AMAZING! He saw us just on the side, between his procedures in the surgery center. He looked at the video that Lori had me take specifically for him, to show him the well in Braska’s tongue and how her movement is inhibited. He agreed that she would benefit from a release, and he said he could do it… next week. When we’re not scheduled to be here. He’s out of town the rest of this week to take his kid to college, so no options there. I called my ENT as soon as I left to make an appointment to talk to him about it, then after some conversation and consideration, I called back to see if I could get an idea of if this is something he’d consider doing. Many won’t do it, Dr. K says. Many ENTs don’t see the purpose or consider it necessary. So I’m hoping to hear back from Dr. M at StL Children’s tomorrow to see if he’s at least open to evaluating her and talking with Dr. K. If he’s not, we’ll be looking for an ENT who will. Can’t imagine flying back out here to do it is feasible, though Dr. K is totally willing. Can’t tell you how cool he was. Just super.
Once we were done there, we headed home. We were tired, both of us. And the rest of the day was relaxing, doing a little laundry, having dinner, a couple sessions of Skype with home crew, and some work catching up for me. Braska enjoyed Frozen while building with some blocks and dancing in front of the mirrored closet doors. Happy girl.
Here’s the clinical take-aways from today…
•Confirmation of the posterior ankyloglossia. Her frenulum that hold the tongue to the bottom of the mouth is too short, according to Dr. K. It’s not too far forward toward the tip of her tongue, but because it’s so short, it doesn’t allow any movement. (Kind of like look in the mirror and move your tongue around, but imagine the center about an inch to two behind the tip doesn’t move. Difficult to work food in the mouth.)
•Confirmation of kyphosis (curvature of the upper spine, not side to side, more like permanent slouching) but learned that it’s flexible, meaning that with work it can be corrected. Stretches, focused exercises, etc. Lori’s husband is immediate past president of the American Chiropractic Association, so he’s going to give some resources there as well for monitoring it. (Connections galore!)
•The aquatic therapy session was FULL of info, beyond what I even can remember, but I”ve been looking back over video. There are head/neck reflexes that aren’t developed as they should have been (relating to vision and depth-perception issues… interesting as B has big vision issues too), her hip flexors are working to compensate for what her abs can’t do. Her core is just plain weak. Big time. She is once again discussed as one of the lowest-tone (that is motor-able, walking, etc) that’s been seen. Tone can’t be changed. But strength can be increased to help offset the struggles related to tone. I’m not clinical, but it makes sense to the pros. We got lots of video examples of exercises to do in the pool, and we’ll be looking into aquatic therapy at home. It is available, possibly. Liz said she was “the perfect candidate” for aquatic therapy because of her unique combination of sensory and motor weakness issues. And B loved it. Worked like a champ to the point of exhaustion, smiling the whole time.
It’s just beyond amazing that we came here looking to solve the chewing mystery, and we have, kind of, but in the manner of finding several other things to address… bittersweet.
I’m sure there’s more. But I’m really very tired and will opt for sleep now. My apologies for any grammatical errors.
I can’t thank you enough for the calls, texts, messages, and all of you who are helping with various things. Pardon me if I get back to town, though, and melt into mush for a few days while I process.