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An Evie Update

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.

30 Comments

  • Heather

    My daughter just turned 10 months old today…she doesn’t crawl yet, hates sitting up (just falls backwards when she’s tired of sitting), doesn’t pull herself up at all, can’t stand on her own…she does scoot forward at an “army crawl” and spends time on her belly…but that is all relatively new. Hang in there mama!

  • Theresa

    Thanks for the update. My daughter was failure to thrive and now at age 2 is staying right about 3% for weight. We’re obviously dealing with different issues, but from one mom to another, be assured of my prayers.

  • October Rose

    Prayers for you. If it makes you feel any better, one of my two 11.5 month olds JUST figured out how to sit up by himself from a prone position, and he just now even showing any interest in pulling up. He’s only been doing his inchworm-lunge-thing that he does instead of crawling for about a month, maybe a month and a half.

    Not knowing if there’s something wrong or not is so hard … you have my sympathy!

  • Tia

    Hope everything turns out well! Our son had similar vague, unspecific movement issues (tight lower limbs and heel cords). He has been seeing a PT since he was 3 months old and now at 2.5 sees her about once every month. He’s still a bit clumsy and walks pigeon-toed a bit, but he’s mostly par with others his age. I did have a difficult birth and he had a 1 APGAR score at birth. He also didm’t get his first tooth till about a year old and they came in out of order. My mom instinct says something was up, maybe he has small rare genetic something going on, or maybe birth conditions were suboptimal, but we never did figure out any specific thing. But in the end he’s a happy healthy, clever, thriving little boy and so it doesn’t matter. Seems a lot of kids have these vaguely weird developmental trajectories at first but then sort it out later, hopefully Evie is in that camp. Either way she is adorable and lovely.

  • Karen Delaney

    Praying!!! I completely understand your frustration and I am so sorry you haven’t gotten any answers yet. I have 2 who have given me plenty in the mommy stress department. My 3yo has Ring 18 chrom. del. and my 17mo has ESRD and is failure to thrive. It definitely changes your perspective and I am much more appreciative of the little things! My 3yo just started to feed himself this past week and it was full on party mode over here!
    I will pray for your doctors, for inspiration and clarity, for your precious lil one and especially for you! Hang in there, while we may never know the whys, we do know the Lord gave her the best possible chance by blessing her with you 🙂

  • Kate

    Oh, Jenny! This must be so frustrating. The not knowing would make me so crazy. From the sound of things, she’s making progress! My prayers are with your family and especially little Evie!

    • Mary

      What she said! Also, my oldest was very small (yet always proportionate, and consistent on the growth chart), and slowest to all the physical milestones. Strangers would always comment, wow, one so young who can already walk! No, not young, an old walker, actually, just very short : ) Hang in there! Prayers!

  • EW

    Good for you. Keep listening to your gut!!! Mother’s intuition is a gift from God and is seldom wrong. People will always tell you you’re overthinking things when it comes to your kids, but like you said, that’s your job. You know best what they need, and when you know something is wrong you shouldn’t relent. Many prayers for you and Evie!

  • Anne B.

    She really is a doll baby! And I’m so glad you are in the states as you search for answers. Maybe once one milestone falls into place, say tummy-time/rolling over, the rest will follow in quick succession. I hate it when the answers aren’t readily available. I’m rooting for you guys, and praying for you too!

  • Morgan

    She is SO cute! While I don’t have any children of my own, I strongly advise to listen to your mommy-instinct. My parents went through a bit of a run-around with my brother when he was little and despite doctors saying that it was all in my mom’s head, eventually they figured out what was going on. The fact that Evie’s meeting some milestones (sitting is huge!!) is encouraging! Many prayers for peace and clarity!!

  • thesewallsblog.com

    So sorry about all this stress and worry. I hope your beautiful girl continues to improve and begins to set your mind at ease. (And oh, the head banging thing? My oldest did that at Evie’s age, and continued to until maybe 18 months or so. Temper, temper…)

  • thesewallsblog.com

    Also, (small comfort, I’m sure, but) our pediatrician always reminds us that crawling is not a developmental stage. Some children never do it at all. As long as they get to walking at a reasonable time (and I imagine you’re concerned about that too, what with the not bearing weight on her legs thing), it doesn’t matter whether they ever crawled.

  • Lisa

    Prayers, Jenny! I’m sure it can’t be easy to just wait it out/ be in a diagnosis limbo. My sis Michelle’s youngest just started PT for his walking- he’s 20 months and not quite walking on his own yet. And it was one of those situations where you’re not certain there’s something not right until you wait and see, which is so hard as a parent!

  • Brittney

    That’s so hard as a mom! Sounds like you guys are going down a good path with the PT and chiro. Not to add to the goose chase but have you had her checked for hip dysplasia? Our daughter had it (was discovered at birth) and had similar symptoms you’re mentioning (tight hips, baby planks, etc). She wasn’t breech and was delivered vaginally so she didn’t have any of the major red flags of babies who get it but was a lucky find by our pediatrician.

    • Jenny

      Okay so crazily enough, her PT referred her for an evaluation by an orthopedist today because I brought this up, thanks to YOU. She had mentioned a disparity between the folds above her butt cheeks (for lack of a more technical label) and then after I brought up the idea, she spent about 15 minutes manipulating her hip joints and checking different positions. So THANK YOU, to everyone who commented and prayed. She’s seeing an orthopedist next week so maybe we’re on to something.

      Also, she stood with her hands on a low table today for more than 3 minutes, shifting her weight from foot to foot and holding herself steady. Definite first. Thank you guys for all the prayers!

  • Nicole Hough

    First of all she is ADORABLE! Second of all, I am praying that you get some answers for your little cutie. But I will also pray for peace for you. It is so hard to be the mom. I also say, go with your instincts. Hopefully it is nothing, but better safe than sorry. Sometimes moms pick up on stuff that a doctor wouldn’t notice. Hang in there Mama! 🙂

  • Ashley Crane

    I am firmly in the “work, pray, and worry obsessively” camp. I’m sure St. Paul *meant* to say “have no anxiety at all, unless you are a mother, then worry about x, y, and z ALL THE TIME.” Right?

    I’m praying for peace and answers for you. My own nagging worries will be my reminder to lift up your family–so be assured of frequent prayers 😉

  • Katie

    This sounds a lot like my little peanut, now 3 years old. She had pretty much everything you describe here at that age, plus some GI issues thrown in for good measure. The closest we got to a diagnosis was possible tethered cord, but even that was inconclusive (and I doubt applicable for your girl so don’t worry!!). We did however pursue PT and chiropractic, as you have. Eventually, my LO rolled, crawled and finally walked at 18 months. At 3 I can still see some of her gross motor issues (skills – like jumping – come late, she’s hesitant in gross motor scenarios, and she has little stamina for gross motor activities, still a peanut). I’m hyper aware of her peers abilities vs. hers. BUT a casual observer would see no problem at all, and even her PT would describe her as consistently late, but also consistently making progress so… nothing to loose sleep or stalk google over.
    In hindsight, I can also appreciate how awesome it was that my daughter’s verbal skills far outpaced her physical ones so I never, ever had to chase her down a street/through a store/whatever. By the time she could run she could also easily follow my directions & instruction. Also in hindsight, if you’re going to carry them for 18 months (or whatever it ends up being for you…) thank goodness they’re tiny!
    Like the commenter above, I sometimes wonder if there’s some minor genetic issue that is just being missed but, bottom line my daughter is happy and healthy so I can live without answers if they’re not available for now.
    I wouldn’t wish the uncertainty you’re facing on anyone… I’ve been there and it’s crazy-making… but I hope that you’ll find some solace in knowing that Evie is certainly not the only motor-challenged little peanut around and that others just like her turned out just fine!

  • Cecilia

    Our grandson is two weeks younger (12/27) than your Evie. He barely rolls over, doesn’t crawl and doesn’t say any words like your doll. The range of developmental goals is so varied. His mother did not walk until 19 months and back then in the early 80s that was a worry, so my heart goes out to you. Continue to go to our Blessed Mother. A senior fan.

  • Mary

    She is precious. All in God’s hands. Thank The Lord she has a great mama taking care of her. Be at peace, only time will tell as it’s a growing game, sounds like.
    Ps- have they looked at her growth plates?

  • Kris

    My oldest son didn’t walk until he was almost 18 months. No idea why. Hope the hip dysplasia pans out – and gives you an answer! So frustrating to know the SOMETHING is not right but not be able to have something definitive.

  • linda

    an USA based woman who was barren for 27 years has delivered baby boy after reportedly being pregnant for 5 years.
    the woman Ana Zick delivered on Sunday at Evangelical church, during church service. Ana who is married to zick said her problem started after she had a miscarriage.
    she said she has been looking for the fruit of her womb since then, she had sought both medical and spiritual help but all seen to no avail, she try everything to make sure she got pregnant again but all her effort bring no good result, till one day a man introduce DROKOJIE to her, who can help her, the man gave her the the DR contact and Email and told her to try and contact the doctor and also have faith. the woman really did, before she noticed that she was pregnant but at the same time, she was observing her normal menstrual circles, she said she waited endlessly to deliver but all expectations was to no avail, this prompted her to relocate, her searching for solution brought her to the church where she eventually delivered a baby boy, according to her, those years were traumatic because he husband was under intensive pressure to send her always, i was rejected by my relations, my husband family who did not give me the chance of bearing a child, my only consolations was god and this doctor called DROKOJIEHEALINGHOME the man introduce to me that help me get the pregnant the first place.
    on how it happen, she explained that she noticed that water was coming out from her private part and she went to a room to check what was happening before she know it, the baby came out alive, she said she raised an alarm which attracted residents who trooped to the church in droves to see the woman and the new born baby.
    when the PM news reports to the place, residents were still visiting the church to congratulate the woman and her husband, zick who expressed shock on what happen.
    zick said he did not believe his wife over the years when she claimed to be pregnant because he had waited in vain, he said he was grateful to god and [email protected] for what he had done and thanked the well wisher for their support, she also advice everybody who had the same problem of getting pregnant or any others problem to please contact the man for help and have faith because that is the most reason she came out to shear the testimony to word.
    the same god that use this man to help me, will also use he to help you too.

  • Annery

    Prayers! Thanks for the update! My 3y/o foster has very low muscle tone and is super tiny as well. We’re hoping occupational therapy will help with the muscle tone.

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