Sometimes I'm really grateful that keeping up-to-date with this blog allows me the outlet to organize things happening in my brain and somewhat download them. I've realized that summarizing events in our lives for the purpose of documentation really helps me to mentally pass it on. It is sort of like venting an issue to a friend which helps you to kind of get over an annoyance or hurdle.
Anyways, here if the full download on what's up with Ivy.
Ever since Ivy was a newborn I've suspected something tiny was amiss. Ivy was a floppy baby, very loose and "melted" into you when holding her. I personally love this about her. She is SO cuddly! Her feet could flex completely back and touch her shin. I noticed this the first day she was born and I distinctly recall thinking, "wow, she was really cocooned in my belly." I didn't know that it wasn't normal for a newborn foot to flex that way.
Ivy hit most of gross-motor milestones late, but not late enough for pediatricians to suggest evaluation. She had a janky crawl and never crawled in the typical all fours position.
When she learned to stand she needed a lot of support for much longer than Kip did. It took her a lot of time to build the confidence to let go. Her stance was wide with her feet splayed out to create a wider, more supportive base. She would often curl her toes as if trying to grip the floor.
When she eventually walked, it looked a bit like a ballerina with her feet rotated out.
All of this was rather subtle and when we began noticing things and brought them to a pediatrician, I was constantly told it was normal or not a big deal. And it wasn't just one pediatrician who said this.
By Ivy's 2nd birthday, her walking revealed a pronation in both feet. Both ankles curve inward with her heel flexed out. I told the pediatrician at her well visit and he said she just needed better shoes. A couple of months later I scheduled a separate appointment with a different pediatrician to just address this ongoing issue, particularly the fact that Ivy cannot run or jump. That pediatrician told us we should just have Ivy evaluated by Early Intervention since she would age out of those services at age three.
So, in the fall of 2022 we had Ivy evaluated by Early Intervention for a gross motor
delay.
The two evaluators were incredibly kind and informative. They determined Ivy was not eligible for services but did
present with hypotonia and a delay of several months in gross motor milestones. This was the FIRST TIME
anyone mentioned hypotonia and the first time I became aware of all the red flags Ivy presented with since birth.
Dan and I took Ivy
to get a hip x-ray in late December and she was cleared for hip
dysplasia but given a confirmed diagnosis of hypotonia. Mandy and I
followed-up with a podiatrist in January and had a third doctor confirm
hypotonia as well as significant pronation in both feet (caused by hypotonia).
What has
been most frustrating throughout all of this is the fact that every
single professional we've seen SINCE being told she has hypotonia has acknowledged an issue but simply
passed us along to the next person. No one was helping us understand the
problem and proposing solutions. Now here's the thing, hypotonia, while supposedly "common" is NOT normal.
Fortunately, Ivy's case is
very mild and that is perhaps why doctors never thought it was a problem? However, the condition is impacting Ivy's development and even after pointing things out to the doctors many, many times, it wasn't
until the Early Intervention evaluators gave us a label, that we even
had something to research.
I recognize there are far worse cases and other children and parents dealing with far more frustrating scenarios. I feel for them which is why I am trying to limit my whining about this whole ordeal. I'm only sharing our little journey to this point for my own sense of closure and in case anyone else stumbles across this looking for those red flags we missed.
A week after Mandy and I took Ivy to the discouraging podiatry appointment, we had an assessment done with a pediatric physical therapist. Speaking with these young physical therapists made a world of difference. They acknowledged everything we were seeing and had suggestions! They didn't say "I've seen worse," (although, I'm sure they have). They heard us and gave us real things to work on in order to help Ivy progress. The whole appointment felt revolutionary.
Week 1: meeting Ms. Lindsey and Ms. Julianna and trying out the stairs and walking on uneven surfaces.
Week 2: practicing running with a fun game of grocery store/ice cream delivery.
Week 3: bear crawl, saucer spinning, practice jumping, walking across the bumpy beam, and climbing!
Week 4: bravery on the slide and running through an obstacle course.
Week 5: more obstacle courses and climbing.
Week 6: traversing the bumpy ball pit and rescuing lady bugs. The therapists said Ivy engages with the play aspect of the therapy really well and gets very involved in the tasks.
Because Ivy didn't qualify for services, we pay out-of-pocket for PT every week. It's not very cheap but it is worth it. The therapist is helping Ivy strengthen her core muscles and giving her guided exposure and practice working on skills like running and jumping in a controlled environment. Ivy is still building confidence to run and jump independently but she loves to come to PT and get one-on-one attention. It is special for her and she has a good time. Ms. Lindsey is helping us know how to help Ivy practice these exercises at home and talking us through issues she sees. I am grateful for Ms. Lindsey giving us tools and practical advice, that is all I was searching for throughout this entire process.
Ivy will always have hypotonia. It is not something you grow out of or gain with exercise. Her muscle tone, particularly in her legs, will always be lax. She will tire more easily and have to exert more energy to do physical activities. She will likely always feel slightly unstable and resulting in what might be perceived as clumsiness. Sports may be more difficult for her and she probably won't be a track star, but she will learn to adapt and develop her own ways to compensate. We are just hoping we help her as much as we can now so that she doesn't develop complications with alignment or pain from having to compensate in harmful ways later in life. She is learning through this experience and so are we.
