Jamsey

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. 

Captain Maggie

Last Monday I sat in the room and watched as Maggie went through another OT evaluation. She'd been in OT until this last April, when I pulled her out after being told multiple times that the current therapy place felt like she just didn't need it anymore. 

I was shocked, as was just about everyone else that worked with her, because while she's very independent and has awesome fine and gross motor skills, she definitely has her share of sensory issues (especially auditory sensory issues).

It was the first evaluation that she'd done in a few years. 

I have to admit, OT and speech are not super high on my list of priorities when it comes to therapies on our schedules.  I mean, I take her, week after week, year after year, for that one hour a week, but because of the brief time that she's with those particular therapists she never quite warms up to them (she's in therapy roughly 26 hours a week, so they make up just a tiny part of her schedule). 

The therapists who work with her every day are a different story.  She spends her weekends asking when she'll see them again.  She drags me to the door to go to "school" and when I drop her out, if I linger too long, she'll push me to the door and say "Bye, bye" until I get the hint. 

Still, her speech therapist thought it would be helpful for her to see an OT at the center where she takes speech and there was no wait list this time around (the first time the wait list was a year long) and they could put speech and OT back to back (which honestly at this point was a huge factor) and so I agreed to have her start back up. 

Paul and I were both able to be there for the evaluation.

Maggie's flare for the dramatic made an appearance.  There was dancing. There was twirling. 

And then she reluctantly made an enormous tower of blocks. 

She protested having to stop twirling, and told her new OT the names of the Bubble Guppies at leat a dozen times, but once she settled in to build she was focused on the task at hand.  After that she was supposed to put some blocks in a cup, but instead she stacked them again, one on top of the other.  The cup wasn't quite level on the table, so she compensated for it by stacking each block slightly more to the left, so that her tower moved sideways, while staying balanced.  I don't think I could have built something that tall and uneven that stayed standing for as long as her tower did. 

She unbuttoned buttons.  She laced a sewing card.  She cut two straight lines and did plenty of other things that I had no idea that she could do. 

On a break she took a few pieces of chalk and drew on the chalk side of an easel, labeling as she drew.  "Mermaid.  Beach.  Water.  Sun.  Flower."

She's done so many amazing things over the years that I know that I shouldn't really be surprised by anything that she does. 

Still, I find that I am.

After the evaluation we accompanied Nani and Grumpa (who the boys have renamed Bopa) to Toys R' Us.  Sadie was adamant that there was one thing she wanted for her birthday.  A bike.  And to learn to ride that bike. 

As Sadie picked out a purple MLP bike, Maggie and I strolled up and down the aisles.  I was thinking about getting her a bike for her birthday too.  We strolled past the Princess bikes, and the Finding Dory bikes, and a particularly colorful Rainbow Dash bike. 

Maggie was unimpressed. 

Then she saw it.  The Captain America bike.  And she flung herself sideways in the cart and managed to grab the handlebars and hung on tight. 

She seldom shows any interest in any toys in toy stores, so I put her down and let her sit on it and helped her ride up and down the aisle.  She loved it. 

And by the time we left Nani and Bopa had volunteered to add the Captain America bike to their shopping cart.

And so it was, on Sadie's birthday that we took all the kids outside, Sadie and Maggie on their new bikes, Patch on a handed down tricycle (while loudly telling us that he needs a bike for his birthday in November), and James sitting in the little red wagon.

I shouldn't have been surprised that after five minutes of Paul helping keep her steady she was racing down the street, steering, speeding up and skidding to sudden stops. 

This is Maggie we're talking about. 

And of course, the bike matches her "berry dress" (which is being washed nearly every night since she wants to wear it almost every day):

And in possibly even bigger news, during the half hour the kids were riding bikes before bedtime, she didn't try to elope once, even though there was a huge field nearby and she walked to the edge of it and stared off at it.  Instead of sprinting into the open space she came back and kept playing with her bike and running around with her brother and sister! 

I won't be taking of her GPS anytime soon... but... baby steps! 

James, Maggie, Important Appointments and Other Updates

I flew through the MCHAT in the waiting room before James' appointment, keeping one hand behind his back as he tottered on the edge of a chair, staring at the tiger barbs zipping back and forth across the top of the pediatrician's fish tank.

"Fish!  Fish!" I said.
"Ahhh!  Ahhh!" He replied.

He nearly always responds with vowels when I try to convince him to say a word. Even if it's Mama.

I'd already finished the ASQ at home earlier in the morning and while I knew he would be flagged as failing every single category, in particular gross motor skills and speech, I also could see that we were making some progress.  He could do two of the six expected skills for 18 months "some of the time" instead of being unable to complete any of them.  That was huge in my book.

During the appointment itself, both the pediatrician and I were distracted.  We were having major problems with one of the other kid's medications and had been frantically playing phone tag all week.  We skimmed through James' checks, because most of the problems that were obvious were already being addressed by his neurologist.

By then he'd already been checked out by the med student of the day.  I'd quickly given him a run down of his history.

At eight months they noticed he had hypotonia and hyperflexibility.  At ten months he started physical therapy with Early On.  He heavily favors the left side of his body over his right and avoids using his right arm and to an extent his right leg, as much as possible.

We know his speech is delayed and Early On is monitoring it.  He'll be meeting with a speech therapist soon. He just started walking, but his right foot turns in and pronates in dramatically, which makes him fall frequently.

Next week the neurologist will be writing a script for orthotics, because we've given it three months and it hasn't improved on its own.  He has been tested for muscular dystrophy, and the neurologist said the blood test ruled that out.

It was the same as every other Well Baby Check.  I go over what's happened so far and they say to keep seeing the neurologist.

We hustled from that appointment to another appointment, and I didn't give the Well Baby Check another thought.  There are appointments that I worry about.  Well Baby Checks are not high on that list.

Two days later I was coming out of Maggie's appointment with her new geneticist when my phone rang.

That was an appointment I'd worried about.  We'd taken "the next available appointment" when we'd scheduled it back during the first week of October.

It had been seven months out.  I was constantly checking the calendar to make sure we weren't going to miss it.  When it takes that long to get in to see somebody, you want to be absolutely certain you're there.  And I'd been warned that they don't always call to confirm.

At that appointment the geneticist said that he didn't think she had Angelman's but that she had definite markers for Angelman's, which has to do with missing information on the 15th chromosome.  He threw out some other possibilities, like Fragile X and I made mental notes to research the suggestions he was making when I got home.  I already knew a bit about Angelman's because if you Google all the symptoms that James has that's what comes up with a pretty much 100% match, but I hadn't read anything about it for a while, and I definitely needed a refresher.

He said he thought the odds were 50-60% that he'd find something significant when the blood work came in, but that it would take a month to get the blood work approved and then another month to get the results in once the blood had been drawn.

We left that appointment and I was just about to walk into Aldi, when the phone rang.  I recognized the number as our pediatrician's office and expected to hear a nurse or social worker on the other end of the line when I picked up.  Instead it was our pediatrician calling.

She explained that when we'd been in the office the computer system had been having problems and the results for the MCHAT hadn't come back right away.  In my head I thought "No big deal, he totally rocked the MCHAT." but of course, if he had, she wouldn't have been calling me.  Developmental Pediatrician's don't usually call themselves to tell you a little test like the MCHAT is great.

Perhaps this shows how relative "normal" is in our world, because while I thought he'd done great he'd actually scored extremely high (which is apparently not good) with three critical flags, and I needed to call the schedule a ADOS (the autism evaluation test) as soon as possible.  I already knew from a conversation with Maggie's social worker, that they were booked three months out and had a wait list for appointments beyond that point, at the place where he would need to go to be tested.  

A few days later I gave the update to his neurologist while he wrote the script for orthotics, ordered a sedated MRI, which he deemed necessary on two points, most especially because of the right side weakness, and explained that if his right leg continued to do what it is currently doing we'll need to refer him over to orthopedic specialist to look into other causes.

Oh and if the hospital couldn't get him in for sedated MRI in thirty days I'd need to take him back for another physical.  Of course.  Because you need a physical within thirty days for sedation (that's why Mae had been seen that very morning).

Yesterday, as I climbed into bed, I thought about Maggie and James and how the two of them communicate, flawlessly.  She adores him and the feeling is mutual.  They are inseparable.  They think that the same things are funny.  They play together constantly.  And their communication is seamless.

So maybe there's more to those MCHAT results than I first imagined.  After five phone calls he's off the waiting list and will be tested in mid July.  And then we'll start to get answers about whether he and his favorite playmate have even more in common than we'd guessed.

On Staircases and Emergency Trips to Pick Up Baby Gates

Yesterday was one of those days.

The kind when you frantically message your husband on Facebook and say something along the lines of "I need you to go to Target and pick up the new baby gate that I just ordered and paid for online and bring it home as soon as you can and assemble it in place of the old gate across the stairs because it's just not working anymore!!!!"

Only in real life the message was split up into a dozen small hastily sent fragments, typed with one hand while making sure the baby didn't attempt to lay siege to the stairs yet again.

I'm pretty sure it was "one of those days" because Saturday was so perfect and everyone had been absolutely and completely on their best behavior at the exact same time all day Saturday.  The scales of the balance needed to swing back a bit in the opposite direction to even things out.

Is it strange that while I was picking out the baby gate on the website while scanning for the words "in stock now" I was estimating how long it would last?

Ah yes, an accordion style wooden gate.  Are those metal connecting pieces?  I think so.  We've had two of those... it might last for... six months before they destroy it.... six months is a good run for a baby gate in this house.  And it drills into the wall.  None of those pressure plates.  Ridiculous.  The kids can take those out in an afternoon.  Let's do it.

Except it arrived with only plastic wall connecting pieces... so maybe it'll only last four months.  Or two.

Maggie and James are as thick as thieves.  He looks up to her and has apparently decided to follow in her footsteps... straight up the walls.

When Maggie was tiny she started climbing things.  Of course, she walked first, taking her first steps at 10 months and walking across the room on her first birthday.

James has decided to skip walking and go straight to climbing.

On Sunday Patch and Maggie spent the day opening the baby gate (which apparently wasn't all the "baby" proof anyways) and encouraging him to sprint climb our stair case before I could get to him.

He's surprisingly good at it.  He's also mastered reckless climbs up onto the dining room chairs and the couch.

Falling does not appear to deter him in the least.

The new gate, at three feet tall, doesn't deter Maggie in the least.  She can easily swing herself over it in a matter of moments.

James and Patch, on the other hand are now stuck downstairs until I lift the handle.

Which reminds me, I still haven't blogged about James' latest doctor's appointment.

At James' last neurology appointment he narrowly avoided being sent for a sedated MRI.

He's a big fan of his left arm and his left leg.  He's not a big fan of using his right arm or his right leg if he can help it.

He drags his right leg a little when he pushes his little walker during PT, and his right ankle tips inward and wobbles wildly from side to side and forward out over his toes.  And while he demonstrated great fine motor skills with his left hand, he carefully avoids using his right.

However at his neuro appointment the neurologist offered him a marble, but only if he took it with his right hand.

Apparently James had never ever seen anything in his life he wanted (to eat) as much as that marble and he was willing to use his right hand to get it if that was the only way it was going to happen.

Then we had to wrestle it away from him as he clung on to it for dear life and attempted to pop it into his mouth.  His grip on his right hand seems just fine when he does use it.

So he bought himself a three month (and hopefully forever) reprieve from going under for a look at the part of his brain that controls gross motor movement.  And I'm supposed to call when he started taking steps on his own, or after his next PT appointment depending on whether his PT wants to wait until he's up and about or get them right away, to get a prescription sent over for orthotics for that wobbly foot.

And as you can probably tell from the start of this post, both his right arm and leg seem perfectly capable of climbing our very steep staircase, so I have a feeling by his next appointment he won't need that MRI at all.

Tummy Time and Developmental Delays

I have a love hate relationship with the ASQ.

Actually that's not totally true.

It's mostly a hate-hate relationship.

I mean, logically I get why it's important.

I get why the kids' pediatricians office has us fill them out.  I know that the checklist is useful in identifying developmental problems.

But that doesn't mean I look forward to it.  Checking "not yet" over and over again gets depressing really, really fast.

It's the opposite of the twice a year therapy evaluations where we look at how far Mae has come and all the things she can do and is working to do.  It can feel like a giant list of can'ts.

Still, when James' ASQ arrived for his six month well baby check I wasn't worried.

At least I wasn't worried until I found myself scrolling along on Facebook and started to notice that all the babies that were born after he was born here doing things that he isn't even near doing.

Then I went back to the mantle and found the envelope with that Ages and Stages Questionnaire in it and ripped it open and ran my finger down the list.  Yes, yes, yes, sometimes, yes.

Then I got to gross motor skills.  Yes.  Sometimes. Not yet. Not yet. Not yet.  Not yet.

He was already having quite a bit of tummy time but suddenly James found himself in baby boot camp.

What kid, you think ten tummy time sessions in one day is enough?  Push that little chest up off the ground or roll over and we'll talk about taking a break.

After two weeks of super extra tummy times I spoke with two of our OTs, beginning the conversations with the question: "If there were a six month old that got almost all "not yets" on the ASQ do you think the doctor would hold off and see how things go, or do you think they'll order testing right away?"

After answering a few more questions on what's going on, the general consensus is that physical therapy is very likely to be ordered right away.

Thankfully we already have quite a few supports in place, so today at a Early On activity I was able to ask even more questions and when Patch has his Early On appointment next week I'll ask about setting up an eval (James also has his pediatricians' appointment next week), because he's not rolling all the way over on his own, or pushing his chest up off the floor or putting any weight on his legs (they're seriously like jelly when I try to get him to stand).

He's social and friendly and smiley and happy.  He's just also kind of floppy (enough so that I've started to think of him as "Floppy Baby" instead of "Grumpy Baby.").

I'm not worried at this point.  If there's one thing I've learned in the last year and a half it's that early intervention can be huge and we're certainly catching on that there may be red flags early this time.

So now to gear up for another week of appointments and days of Super Tummy Time for the tiniest member of the family.