We had a checkup at the neo-neuro clinic on Tuesday.  Papaw and Nana were on hand for the haul.  When we travel for a long appointment, it looks a little like this:

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On the agenda:

  • Developmental screening by Occupational Therapist
  • Neurology check up
  • Neo-natalogy checkup
  • Unrealistic audiology appointment

For starters, the first three items took over 3 hours…so we never made the audiology appointment.

The developmental screening didn’t go as well as I had hoped.  Landon was 100% himself.  Sleepy.  Weak.  But tracked far better than normal with his eyes, especially light.  He moved a little.  He lifted his head in tummy time.  He was Landon.

Nolan wasn’t feeling quite himself.  He was mostly annoyed.  He displayed some strength, but wouldn’t track at all.  He raised his head well in tummy time, and even rolled over.

There are 1,000 details I’m leaving out, but overall, she assessed them as being “very developmentally delayed”.  They are currently on track with a typical newborn in their early weeks.  Primarily due to their inability to hold their head at midline, and focus and track well.

But what about the rolling over?

Good question.  That may be less of a sign of strength, and more of a sign of extension muscles that are comparatively stronger than flexing muscles.   (At a high level…Arch your back = extend.  Crunch your abs = flex)  They extend…almost TOO well.  And their ability to flex is lagging behind.

Her recommendation was to add a visual specialist to the therapy program we’re participating in, and to add PT/OT through a local office to our plan.

Neurology was pleased that Nolan responded fine to being weaned off of Keppra.  They also agreed to wean Landon off of Phenobarbital in the hopes that he’ll perk up and have more alert time.  She verbalized something I was afraid to…Landon’s drowsiness might not be the result of medicine.  We might pull the meds back only to find…this is as alert as he can be right now.  I certainly hope that’s not the case.  But we’ll never know unless we try.

I asked where the boys were in terms of her expectations for a baby with Liss.  Behind, On track, Ahead…  She said they were on track.

“On track” would be something to celebrate if they didn’t have such horribly low expectations.

It’s great that they are eating by mouth.  But she saw that as more of a positive because it is convenient for us, rather than an indication that they would be any more capable than a baby who required a feeding tube.  So far…in their eyes it is as they said it would be. And that’s a bit frightening.

Neo-Natology provided a general checkup.  The big update here was in feeding.  Nolan’s weight is lagging way behind.  That is primarily due to a two week struggle with mucus.  He’s having a hard time keeping milk down and his weight gain has stalled.  In fact he’s lost 4 or 5 ounces in that window.  To help, we’re going to increase the calorie count in the bottles so what he does keep down has a higher count.  Meanwhile…Landon is gaining too well.  They were fine with his growth curves, but I expressed concern that he might be gaining too fast.  Especially given his low level of activity (not burning a lot of calories) and already weakened state (imagine how much harder being mobile will be if we let him become too overweight).  They understood my concern, so we’re going to switch him to a lower calorie formula.

If I focus on what I did not want to hear, this appointment could knock some wind out of my sails.  I hate that they didn’t say “Congratulations!  You beat Lissencephaly!”  I hate that the boys are on track with their horrible expectations.  I hate that they don’t celebrate the little things as naively as we do.

I hate that Lissencephaly exists.

And I hate that these boys have it.

But if I focus on the positives…we achieved two of my goals.  They prescribed therapy, and were willing to trial Landon off of Phenobarb.  So in that way, the appointment was a success.

I love that Landon tracked better than ever during his exam.

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I love that Nolan listened to the chatter about extension vs flexing being an issue, and looked over at me as if to say “watch this!”.

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I love that every time we return to this spot, they are a little older, a little bigger, and a little stronger.

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I love that these boys exist.

And I love that I have them.

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