Braska slept well last night in our temporary hotel home. I slept ok. I am a very light sleeper, and there were some noises on and off in the hotel that kept me from getting long intervals of sleep. And Miss Grind-when-I-wake-for-awhile-at-night…. that’s always fun. There’s a reason why my kids don’t sleep in my room usually! Thankfully, it wasn’t as long as it sometimes can be. She was only awake for one little bout for maybe 15 minutes. My super duty sound machine along with the hotel a/c weren’t quite enough to get me a full night’s sleep. It was enough, though, so I’m thankful.
We got up and I worked while B watched some of her favorite PBS shows. We got things together and found our way to Lori’s office on time. Though it was a winding way to get there via GPS. Things are so different here. Norwalk isn’t a big city. It feels kind of small-town-ish, yet there’s an age to it, a history, which I’m sure is just part of being in this part of the country. But it feels strange to me. Can’t put my finger on it. And I’ve yet to see a subdivision, the lack of which I hear is part of the most endearing part of this area from family members who hail from nearby. It’s pretty, lots of trees, unique houses, and small little business. Even the chain businesses look more local. That part’s kind of cool. Things are just different, not in a bad way.
Lori took us back and started talking about what she saw right away. We’ve sent her videos and pictures, therapy background and medical history. And she has seen her once before, you might remember, in St. Louis for a workshop demo. Not the same kind of formal eval, but she had interaction with her and was really helpful back then.
I got video of most all of the interaction today, so we’ll be sharing that. I think our therapists will find it very interesting. I wish I could relay it all here too, but it’s so much to process. Here’s some bullets of the highlights…
•Braska’s core strength is a problem. With feeding, you ask?? Yep, it’s all related. It’s harder to eat when you’re slouched over, and it’s much harder work for a kid with sensory issues to focus on the task when the body is giving too much or needing more input. And because feeding is not pleasant for her, she chooses to avoid and let the sensory demands take over, when left to her own decisions. We believe that many of her sensory needs can be met with stronger core and more stability so she doesn’t need to compensate to feel secure.
•Because of the above, we got a new appointment added to our agenda tomorrow, aquatic physical therapy, combining the deep pressure aspects of the water while working on focused core exercises. Thankfully an expert was available on short notice. Lori texted, response was affirmative, appointment made.
•While we were there, she put B in a SPIO long-sleeve top. It’s kind of like heavy duty spandex to help with posture and pressure for sensory input. It was AMAZING to see the difference. I was shocked. She let us borrow it this afternoon, and I put it on her a couple times. It just helps her be more organized and supports her. She didn’t grind her teeth with it on either!!!! We’ll be looking to get that for sure… every girl needs a $130 shirt, right? oh well!
•Lori also believes that much of the in-the-mouth struggle with food is due to posterior ankyloglossia, or a kind of tongue tie issue to most of the general population. Braska is able to move the tip of her tongue around, but she had the center of her tongue kind of create a bowl when she does so because it’s not free to move as well. This creates a big problem with feeding as she cannot move the food safely through her mouth. This has not been something we’ve had mentioned before, but after reviewing all the info about it, it seems clear as day. I’m trying hard not to spend time in the “we could have done so much better so much earlier” world and focus on where we go from here. It’s not easy today to do that quite yet… I wish we’d helped her so much earlier.
•Because of the above, Lori texted again, to Dr. K, and ENT and a professor at Yale-New Haven, well versed in these things and with a working knowledge of the whole picture that B’s dealing with, sensory and physical. He “happens” to be doing procedure Wednesday on another little guy with DS that is part of his research for similar issues. He is in surgery all day tomorrow, but he has offered me his cell phone number to call in the morning and find out what time we should be there to see him between his cases tomorrow afternoon. Wow. Speechless. Add another appointment to tomorrow’s schedule, and that’s ok. (This one just MAY be covered by insurance, so yay!)
•The good news that after every time Lori mentioned a problem, and I asked each time, “But can we fix that? Can it be improved?” she said, “Of course!”
•She mentioned often how smart Braska was, how she had fooled lots of people into thinking she could do things because she fakes her way through, gets the end result but does it in a “wrong” way. The problem lies in that she can’t build on that foundation to progress because the underlying strength/skill isn’t there. Lori often says “Cognitive overrides motor” meaning that sometimes knowing how to work around something overrides learning it in the proper manner, which leads to long-term problems. Braska has spent her whole life working really hard at all things related to feeding… and she’s made us believe, in some ways, that she’s more skilled than she is.
•She noted also that Braska’s speech, though very good, still does have articulation indicators of physical/oral motor issues. I thought that was interesting. B hasn’t had specific articulation work in speech therapy for years, as far as goals go.
•Lori was very complimentary of B. She was impressed at how well she listened and though she was very quiet (typical in new settings) she was interactive and cooperative.
•I asked her about the self-feeding element. Braska does not feed herself unless prompted to do so, for just about every bite. She’ll occasionally take a few more on her own if it’s her favorite yogurt, but meals are always about 45 mins to 1 hr if we wait for her to do it… and that’s with almost constant prompting. Mentally exhausting and discouraging…3 times a day. That’s just being honest, folks. Lori said that right now, Braska works so hard to manage the smooth/blended foods she has in her mouth that it’s a very unpleasant experience. The trunk strength and motor planning come into play in working to get that spoon, full of stuff that likes to fall off, up and into her mouth. It’s a slow process. So she doesn’t want to do it. It’s a thing she really dislikes and is very hard for her, and she’s asked to do it 3 times a day. Makes sense. But she also acknowledged the element of familial background, with her dad not liking to eat in general either, he usually considers it a hassle. His having a very narrow list of acceptable foods and sensory issues of his own may be part of her similar issues in that she is his kid, and she has even more chromosomal (read: family material) than the average bear (child). Interesting stuff.
•Because of the above, she doesn’t think we should push self-feeding, and definitely not progress to any chewing until we get some of these underlying issues of sensory, strength, and the frenulum issue dealt with. That’s going to be interesting at school… as of now, they require her to feed herself all the time. We’ll have to think about that…………. Still not sure what the next few weeks will look like.
•After we finished at Lori’s, we came back to the hotel and had lunch. We rested a little (I worked, and she played) and then we went to Walmart for some things. I never would have believed that Walmart could have made me feel so relieved. It just felt familiar, and that was nice. I think I’ve lost some of my adventurous side as I’ve aged!
•We did go to the seaside, Braska’s one request. We didn’t stay long, maybe 5 mins, because we weren’t dressed for it (and I don’t like sand. at all.) and she was ready to go back and relax. Couldn’t blame her.
She has been SUCH a big girl, so cooperative. She’s been goofy and happy and so flexible with what’s happening. I’m amazed at her all over again. We skyped with Daddy and Kinlee tonight, and she just kept on being silly and playing with her sis. As soon as it was over, she wanted to call again.
We’ve got a precious gem, one that needs a bit more polish than some, and I’m trying my best to get her to only the best jewelers to help us with that work.
Thank you for your prayers, encouragement, and support….. tomorrow is another day!
