Monday, September 9, 2013

At nearly 14 months old. Of Early Intervention / Early On

This post takes a break from reliving last year's preemie adventure.

Today was an unexpectedly hard day. Yesterday I'd shared Jonathan's story with a roomful of people. And someone had asked about future prospects for him. And I said something like we couldn't be sure, but perhaps by two or three we'd find that he was going to be relatively normal. And that at this point, there were delays, but no major red flags.

Today we got a new Early Intervention (EI) physical therapist (PT). In each state it's different, but in our state these are public school employees who come to our home once per week and help assess Jonathan and give tips for how to help him develop better, as he is at risk for long-term disability as a result of his prematurity.

I applaud Early On (or Early Intervention). I have worked with two sets of adults with disabilities. Both sets had similar disabilities. One set was from an earlier generation where there was less early intervention, one set was from my generation, where all children were encouraged to develop and pushed to learn new skills at a young age, regardless of ability level. The differences were striking.

So as a mom of a preemie, even while I still hope for a perfectly happy and fairly normal four year old, I drag him to every PT and OT appointment that the specialists seem to think is necessary. I trust their judgement. And their judgement seems to be, so far, that he's doing remarkably well for a 23 weeker, but he still needs to get on track.

I've been blaming his many surgeries for his set backs. And I'm probably right, in part, at least.

All preemie parents worry. Steve worries, many many of the preemie blogs I've read are scattered with parental worries. It makes sense. Our kids have fought so hard to be where they are, and we wonder, are we doing right by them now?

What makes it worse is that every preemie is so very different. It's not like I can go onto a mom board somewhere and find someone whose child has lived through the same exact things as Jonathan and is now responding to the world exactly as Jonathan is. He's unique. There are similarities, but also lots of questions.

I had just gotten myself convinced that he'd be small but healthy, that he'd be running around in no time and that he was relatively okay.

I think most of that is still true. But I got a good dose of reality from this morning's physical therapy session as well.

She started noticing things immediately. I loved her for that.

"Is he constipated?" she asked. I said no. I said he had been chronically constipated before his hernia had been repaired, but since that time five months ago that he was having the opposite problem, if anything.

Mom says I have a big head?
Can I really help it that I'm this AWESOME!
"I worry about his nutrition" she said. So did I, I expressed.  But after months and months of having people tell me that they thought he looked good, chubby even, I'd decided to stop worrying. Yes, he was falling off the growth curve, putting himself in a lower and lower percentage (now he's at .000001% I think), but he was still growing, and he didn't look malnourished.

"His trunk and face look great, but his arms and hands and legs and feet -- his hands and feet are so small," she said, "and that makes me worry about whether or not he's absorbing all his nutrition well. He may be taking in enough food, but if he's not metabolizing it right, that can cause issues. If he's not absorbing the right kind of fat, that will hinder his neurological development."

She asked if I'd seen a nutritionist about this. I had. But that's before we'd had to change formulas for a potential milk allergy. We had just switched off the preemie formula onto a new formula. And would I be seeing the developmental doctor soon?  I would. Next month.

And then she noticed his eyes. I hadn't noticed them. I'd stopped worrying about them a while ago. "They're not moving in tandem" she told me. "And they're not focusing well. Also, his head tilts when he tries to see something, as if he's got astigmatism.  This is going to start impacting his next phase of development when hand-eye coordination is so important."

I hadn't noticed any of that before.

"How does he do with grasping things?"
"Great!" I said. "He grasps puffs with his two fingers and then stares at them for a really long time. He won't put anything in his mouth unless it's a teething biscuit or a spoon. He doesn't like other textures, it seems."

"But look at how he looks at this light," she showed me, "his eyes aren't moving together.  You can see it in where the light reflects off his eyes. It should be reflecting off the same part of both eyes. He sees, he tracks, but I'm not sure how well he's seeing small objects."

She put candy sprinkles on a piece of felt.
He just stared at them.

"Most kids try to grab them," she said.

"It's almost like he can't decide where they are," I said, "if they keep moving on him, maybe that's why he's staring so hard, concentrating so hard. Maybe you're right about the astigmatism thing."

"When do you see his eye doctor next?"
"I think that they didn't have the calendar up while we were there -- we were supposed to call back for an appointment, but we never did."
"Since it's the 9th, and they open their calendars for three months out on the 1st, you'll not get an appointment" she said, "They'll be full. But they'll probably put you on the waiting list."

And she was right. I called before her car was even out of the driveway. They're booked through the year. I gave them three different numbers to call in case of cancellation. I mentioned all the issues the therapist had seen.

I know, all of this is a far cry from the worry about his bowels last year (with NEC) or his eyes last year (with ROP -- that story will come to you in a few weeks) but it still stung a bit. We're not out of the woods yet.
Straight as a board means I can STAND
with something behind me! Even if my form
isn't right, it impresses people, see?
- Long Jon in his Long Johns.

But that wasn't it. She also noticed his legs. Thankfully, this problem I was at least a bit aware of. Feet won't face forward. Knees won't bend. He always wants to be as straight as a board. In his trunk, too. He has a hard time turning just half his body to grab at something. He'll actively circumvent twisting by moving the object to a place where he can see it without half-turning his body.

"He has low muscle tone," she said, "that explains some of the issues."

I noticed his head was shaking. Just a little bit of a tremor.

"Is that from low muscle tone, too?" I asked. "I mean, it's not a seizure. I've seen those."

She said I was right, it wasn't a seizure. It could be low tone. It could be cerebral.

I don't want him to have cerebral issues.

She said it was too early to decide this now, but he might need orthotics. And if he had to get orthotics, they'd have to be custom designed. They don't make them for feet his size. That's not surprising, they don't make walking shoes for feet his size, either.

She heard his tummy. "That's awfully loud," she said.
"You should have heard it before he was switched to a milk-allergy friendly formula!" I said, "and it's strange, but you can see his belly ripple, too, when he has loud stomach noises like that. It's the weirdest thing."

She seemed to think this might indicate something.

Which brought us back to where our conversation had started. His nervous system is still developing, but it seems he's not getting the nutrients he needs, and we don't know why.

This has been my concern for months. And in about two minutes flat, his new Early On physical therapist had seen this.

I told her that the physical therapist at the hospital wanted Jonathan seen by an occupational therapist for fine motor skills. Earlier she'd talked about how she hoped to help minimize his appointments, so I'd expected her to say that she didn't think that was necessary, but instead she heartily agreed. My heart sunk a bit. That's three appointments per week again.

I reminded myself of those two generations of adults with disabilities. Of the difference early intervention had made.  She was right. He needed this. I thought about his locked knees, his unwillingness to rotate his torso, his prone feet... At this age, if we could get him on track, things would be so much better for him for the rest of his life.

But this means I won't be spending my days at home organizing closets or making pumpkin pies, like I'd dreamed. I'll be back to working half-time as Jonathan's therapy coordinator and half-time in my pay job.

I am so so grateful for someone who notices so well. His old PT would spend most of the time with us writing goals or testing his abilities in this or that. Does he grab his feet yet? Does he sit up yet? I saw her as a resource that would refer us to help when things got bad, but she didn't spend much time helping his body move. Not the way the PT at the hospital did.

This new EI PT had a very different approach. The entire time she talked to me, she was also pushing Jonathan, asking him to bear weight on one hand and reach with the other, asking him to turn his torso or grab a toy. Pushing him and watching him, finding out where his limits were and encouraging him to go one or two steps farther. And maybe it's too early to tell, but I think I like it.

That said, whereas the last PT would leave and I would go about my normal daily routine of cleaning or feeding Jonathan, this PT has left me a bit shell-shocked.

So many issues. My concerns were valid. We're not out of the woods yet. And my girls won't be coming home to peanut butter cookies on my days off.  My half-made new garden, stripped of sod but still not planted, will have to stay clay and rocks for another season.

I sigh. I want to cry a little. This road seems too long.

But then again, we wouldn't have it any other way, would we? I mean, yes, healthy, full-term baby -- we'd take that. Even if it meant stretch marks and sleepless nights.  But if we had to have him when we did, we'd rather be walking this road than nearly any other.

It's just a long one, that's all.

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