Sweet little Genevieve has led us on a bit of a goose chase during her brief 10.5 months ex utero. The past 6 weeks in particular have been … confusing. Not bad, definitely. But not filled with relief and answers, either. Here is what we do know, after dozens of chiropractic, physical therapy, pediatric and nutritionist appointments:
She is not failure to thrive (praise God!). She’s still very, very tiny, but all her labs came back normal, and she is growing, albeit very, very slowly. She’s in the 3% for weight, the 25% for head circumference, and the -20% for length. In other words? Very, very short. But (as her nutritionist keeps cheerfully reassuring me) proportionate. That’s why she looks, quite literally, like a living baby doll. She has doll-like proportions.
We’ve also been seeing a really excellent chiropractor who is trained in a specific form of care known as NUCCA. I won’t bore you with the details but you can google it. We’ve seen really encouraging results in terms of her hitting motor milestones and increased range of motion. For example, a month ago she was not tolerating much tummy time at all (at 9 months old) and wasn’t rolling consistently from front to back or back to front. She was also extremely rigid and doing lots of head banging and dramatic, angry baby planks, especially during diaper changes and when we got her dressed. And, most disturbingly, (at least to mama) she wasn’t bearing any weight on her legs. She would collapse them if we ever tried to stand her up. All of that has improved in the past 5 weeks.
We’ve been seeing the chiro weekly, sometimes biweekly, and seeing the PT biweekly. Every day we do exercises with her at home to build up her leg strength and spend lots and lots of time on her tummy, encouraging rolling and coaxing her to crawl. No dice on the crawling yet, but that’s totally in keeping with our other kids’ timelines.
Here’s where I’m scratching my head though: she still isn’t really moving around, not in any real sense. She occasionally scoots herself backwards by accident, but no forward momentum. She also doesn’t pull up on anything, or even attempt to. Her crib is still set at the newborn level, because she has never pulled up or gotten herself from prone to sitting. When sitting, she doesn’t go down to tummy or all fours unless she falls over.
She gets stuck when trying to roll, shooting an arm out at a 90 degree angle to her body and effectively trapping herself on either her back or her stomach. And she resists every attempt to bring her knees up underneath her, screaming when we force her into crawling position.
She crosses her ankles whenever she is lifted and keeps her legs very tightly pinned together. Diaper changes have always been challenging because she will not spread her legs voluntarily, we have to pry them apart.
Her physical therapist sees hyper mobility in her right hip joint, and overall stiffness in her lower body. We do lots of bicycling exercises trying to loosen her up, and spend a fair amount of time down on the floor trying to build up tolerance for weight bearing.
She was 10 days early, so she’s not a preemie by any stretch of the word, or even pre-term, technically. She did get me sent for all kinds of 3rd trimester ultrasounds because her femurs were measuring so short for gestational age. And now she’s a 10.5 month old who wears 0-3 bottoms with ease. Her Apgars were rock solid, her birth was easy (if such a thing can be said), and she has never been majorly ill or injured, thank God. So all the risk factors are…missing.
All this to say, it could be nothing. Or it could be something. The most frustrating part about it is that, as a mom, I see something. But I can’t diagnose it. And even if I could, I don’t see what more we could possibly be doing in terms of helping her to learn to use her body and work her little muscles.
The “issues” I’m seeing, as mommy, are:
– not crawling or initiating movement to get from point A to B – not pulling up – not going from sitting to floor or from floor to sitting, independently – not bearing weight on legs unless manipulated into position – resisting having her knees brought up underneath her in “crawling pose” – occasionally head banging in frustration – rigid, tightly locked legs and hips, making diaper changes and getting dressed fairly difficult – crossing ankles tightly when picked up – extreme rigidity during most tummy time, essentially crazy baby planks – not a tooth in sight (probably nothing, but why not add it to the laundry list) – not trying to recover lost toys, or moving to get a dropped bottle. She just screams and we deliver. So maybe we’re just really well trained…
I feel more than a little crazy, especially when talking to family members, as I sheepishly reveal that we’ve been to yet another doctor’s appointment and everything came back…inconclusive. The refrain from almost everyone who has evaluated her has been, “we’re not really sure what’s going on, there’s no one thing I can put my finger on, let’s wait and see.”
Waiting is tough. It’s tough on mama who wants to know what, if anything, is wrong, and I’m sure it’s tough on my friends and sisters who have to listen to yet another thing I googled at 10 o’clock and night and maybe sort of somehow applies to her.
But, that’s in the job description, right? Work, pray, and worry obsessively…oh, wait, nope. Still not quite hitting that last metric.
So here’s Evie. She’s 10.5 months old, she can’t crawl or scoot, but she has a handful of words, she makes her wants and needs very apparent to anyone in a 15 foot radius, and she’s utterly charming. She can’t pull up, she can’t stand unassisted, and she doesn’t like spending too much time on her tummy, but she is becoming increasingly fond of rolling.
So I guess we’ll wait and see. Thanks for letting me talk at you. Wink emoji.