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!
I was just wondering if you ever got a diagnosis for your daughter with hypotonia. Also, what were the signs you saw early on that made you think she had low tone (like the first few months of her life)? My son is 5 months old and I have been concerned that he has low tone in his upper body. He technically has met all his milestones so far. He has always been able to lift his head the appropriate amt on tummy time, he has rolled tummy to back but doesn’t do it a ton. He rolls back to tummy all the time now(started at 4.5 months), he has just started to army crawl to get places. He smiles (almost every time I talk to him, but not for people he doesn’t know well) and coos and laughs, but not a lot (this is one of my worries). He just isn’t the smiley/bubbly/bouncy baby that I am used to (he is my 4th). He can tripod sit and is getting better at balancing during sitting, but he still folds forward and can’t sit himself back up without help. He pushes up on straight arms during tummy time, but it doesn’t seem easy to him. He reaches for everything when laying down, on his tummy, sitting, standing (supported), and when being held. I feel like he struggles reaching above shoulder level though (when he is upright)- it just looks difficult for him to reach that high. He used to not hold on when I carried him, but within the last month he has started to grab my shirt and clench his legs around my side/hip when he is carried. His pediatrician knows my worries, but she doesn’t seem worried bc he is meeting milestones. I am worried about everything (partly bc I feel like he isn’t like my other kids and partly bc I have severe PPA).
I sent you an email; I know it can be so very hard to know how best to move forward sometimes. PPA is no joke, friend! Please reach out—I’m happy to chaat more if you think it would benefit you!