Between her birth story and the first in a series about hypotonia, it seems my girl is stealing the show around here! Part of my mission in motherhood is sharing the details along the way, so I think it’s important not only to share the struggles but also the progress and the wins as well. The only way I’m surviving three kids, special needs, and a pandemic anyway is all the solidarity. So, might as well pay it forward, right?!
About two months after she was first referred to PT, Olivia saw the pediatrician again to check her tone, progress, and joints. We were hearing a lot of popping and cracking, which seemed to be getting worse but she was not in pain or seeming bothered by it so we were told it’s just the tendon sliding over joints; it’s apparently common for kids with low tone to have hyper mobility in their joints.
Olivia started seeing an SLP (speech-language pathologist) for feeding therapy in February. She’s super interested in foods and self-feeding but can’t do anything with the bolus because of the low tone in her tongue and her general lack of coordination and motor planning. We wanted to hopefully capitalize on that window of opportunity so she doesn’t turn into a picky eater or get discouraged from her failure to swallow successfully.
Her PT was moved to a 45-minute slot weekly, so we’ll be going the same time every week. So between PT, SLP, and OT, she’s a busy gal (ahem, her *MOTHER* is a busy gal). She’s had some GI issues from the beginning (not constipated, but not able to go—her stool is very loose normally but her low muscle tone makes for an interesting shituation 💩 because she can’t coordinate the feeling of fullness with the ability to bear down and dilate her rectal colon). Since the pediatrician thinks the GI issues are related to her overall low muscle tone, she will get a “daily whiff of Miralax” to keep things soft enough that when she does go, it all comes out easily (and also prunes as a regular part of the purée rotation). Since the introduction of solids, even very runny stage 1 purées, she’s had noticeably more difficulty with her bowel movements when the stool is more formed.
The SLP was not impressed with her tongue tie revision from last April, which figures because we got it done by the only person open at the time to do them, and not my first choice. Alas. For now we’re going to try to work on feeding “with the tongue she has” before we talk about another frenectomy. She thinks the frenulum and the low tone are contributing to her lack of oral motor coordination (poor wavelike motion, jaw action when nursing/swallowing to overcompensate, and incomplete range of motion for her tongue overall). She also gave us some of those old school baby food spoons for her to use to try and get her to use her tongue better. We all think OT will definitely help with some of her sensory delays and even recommended putting a spoon + purées on the tray in front of her and letting her get dirty while “self-feeding.” (Y’all know I hate messes and laundry, right?? Between that and the poop, looks like I need to stock up on Dreft!)
In February, while practicing her sitting on the floor in the school room, she fell over and bonked her erupting top teeth so hard on the floor (lots of blood). I freaked out because I could no longer see her teeth! We had an urgent visit with a pediatric dentist, who thankfully said he thinks her teeth are just intruded (pushed back up inside from the impact), but not fractured. He said the blood I saw was from her lip frenulum separating. We will know more once the tooth fully erupts if it has any cracks or discoloration. Basically, he said that the best way to fall and the best time to injure your teeth is when you are actively teething! Good news for my anxious mama heart.
Between homeschooling my kindergartener, learning this baby needed more therapy than your average bear, and attempting to occupy my No-Nap-Nora during the day, the Spring began to feel like a downward spiral. We actively and prayerfully waited for vaccine eligibility with hopes that we could return to some level of prepandemic normalcy. We know now with the Delta surge we’re experiencing that this was misguided or false optimism, but nonetheless, we pressed on.
She is doing well in all her therapies, and that’s the best thing we can be doing for her, so it’s good to start early. We are not seeing regressions, and even though her progress is slow sometimes, we’re happy with it. We know this is not where this story ends. On the horizon were some more specialists: a neurologist to check her brain and development, an orthotist to measure her for some custom braces, and lots of evaluations.
It feels abrupt to end here, but just know this is a series and more of the story is coming! Don’t forget to leave a comment to let me know what questions or experiences you have with Hypotonia, developmental delays, baby/toddler therapies, or anything else pandemic parenting related!
