Monday, August 22, 2016


This child.  It's been a whirlwind of a summer. 

Somehow he's spent the last few months collecting new doctors and therapists the way that some people collect Pokémon. 

To be honest, while he definitely has a gross motor delay, I find myself not overly worried about whatever it is that's going on. 

Since I haven't blogged much lately, and to have my thoughts gathered all in one place, so that at some future date I can look back and chuckle that we were worried at all,I'll give a little bit of background. 

Between the ages of three and five months old we noticed that James seemed kind of floppy for his age.  He wouldn't hold his head up.  We needed to support it like he was a newborn (right now Tessie has better head control at seven weeks than he had at six months).  We were introduced to words like hypotonia and hyperflexible by his pediatrician, who kept a close watch on him. He spent an enormous amount of time on his tummy, but it made not difference. 

When he still wasn't sitting up unsupported at ten months, his pediatrician decided it was time to be a little more proactive in making sure nothing else was going on.  He was bombing just about every category on the ASQ (ages and stage questionnaire) by then and as I watched my ten month old, who couldn't sit up in a high chair by himself, I was starting to worry.

His doctor referred him to the same neurologist that Maggie sees and also referred him to our state's early intervention program, where he was assessed and found to have a more than 20% delay, which qualified him for physical therapy.  The neurologist ran a few tests and said to come back in a few months. 

At physical therapy we found that he strongly preferred his left side over his right.  If there was a way that he could avoid using his right arm and leg, he'd find it.  Having a preference of one side over the other isn't a big deal with someone who's older, but it isn't supposed to happen with someone who's teeny tiny. 

After watching the left side preference and low tone for almost a year, James' neurologist sent him for an MRI.  And after one very long day and a weeks wait, I got a call from an assistant at the neurology department telling me that everything looked fine except... (the next few seconds were some of the longest in my life) he had a sinus infection (sigh of relief) and I should call his regular pediatrician so that we could see if she thought it needed to be treated (by then it didn't). 

A few months ago his physical therapist and neurologist decided he needed orthotics.  He'd started walking a little after eighteen months, but his feet turned in and his ankles rolled in wildly, making him trip every few steps.  In the beginning his entire right side would give in, causing even more falls, but that's improved drastically in the last couple months, although he still falls every minute or so. 

A few months ago his neurologist and pediatrician both decided separately that they would be writing referrals for genetic testing and in September he'll finally get in to see the same geneticist that Maggie saw in April (we're still waiting on test results to process for her). His neurologist doesn't want to do anything until the genetic results are back.  After spending five minutes trying to get a single reflex response from James knees and ankles and getting absolutely no movement he mentioned a test involving sticking needles in muscles to see how they're working, but we're avoiding that at all costs, since he said it'd be pretty unpleasant. 

This week he'll be seeing a orthopedic specialist to make sure there's nothing else that needs to be done about his toes insisting on pointing in.  He's also been seeing an early interventionist (kind of a general therapist who works on gross motor and fine motor and speech and social skills with him) and will meet his new physical therapist this week.  And most recently there have been suggestions of adding OT to the list, which I'm hoping he doesn't need... but will go along with since I know that therapies at this age can mean far less therapy later on. 

In a lot of ways it's odd because he's the polar opposite of Maggie, who took her first steps at ten months and was climbing up on top of Sadie's giant bouncy horse and riding it when she was barely one. 

Still, as I watch the determination with which James has faced these challenges that seem just a little tougher for him than they are for everybody else, like rolling over or sitting up or walking, I can't help but feel like it's all going to be okay.

Although if you want to throw up a prayer that maybe he stops adding new doctor's appointments to the schedule, and keeps growing healthy and strong, I would most definitely appreciate it. 

1 comment:

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