Post Neurology Visit Update On Luke

Here's Luke, waiting to see the neurologist yesterday.  

I wish I had answers, some sort of something new to report, a diagnosis, something.  I left the office singing, "But I still haven't found what I'm lookin' for..."  

I have a new sheaf of papers to add to Luke's medical/therapy binder.  Test results from the EEG, the MRI, the urinalysis, and the bloodwork.  Orders for more testing.  And a very smart pediatric neurologist who looked at Luke and shook his head in bafflement.  

In summary:  his MRI showed a decrease in white matter, his EEG showed seizure activity, his bloodwork showed a highly elevated liver enzyme.  And nothing to connect the dots.  It's not Mosaic Down Syndrome.  It's not Fragile X.  It's not Autism.  

Remember this?

 We get to do it again.  I wish there was a way for you to hear the enthusiasm in my voice when I say, "Oh, goodie."  

We also get more blood tests to check his arsenic and mercury levels, and to look into the possibility of mitochondrial issues (that elevated liver thing) which seemed to have the neurologist a bit concerned.  

On other fronts, feeding therapy is going well.  It's hard for me to get excited about the therapist teaching him to get messy, but I understand that it's part of the process.  

This is Luke's new thing.  He will grab our hand, or sometimes the spoon we're holding, and guide it to his mouth.  

He gets frustrated SO easily.  But one meal at a time, we're working toward some sort of self feeding.  His therapist recommended these Lil' Dipper spoons (he's using one of hers in the pic above).  I have to say a huge thanks to those who shop using our Amazon link, as the Amazon credit we earn from there goes to things like these.  

His physical therapist (behind Luke) and his Infant Development teacher (in front of Luke) come out to the house for therapy, too.  

Which Luke enjoys immensely.  

As you can tell.  

Actually, some parts of it, he does enjoy.  Some of the toys they bring interest him.  But they push him outside his comfort zone.  Which is GOOD.  But he resists it.  His PT is trying to get him to reach to the side more and to twist his body a little, and to balance.  

He's regressed in the last week or so.  He suddenly refuses to sit up by himself any more.  If I sit him on the floor, he throws himself backwards.  He doesn't mind slamming his head into the floor over and over (or he doesn't grasp the cause and effect) because no matter how many times I sit him up, he flings himself back again.  He actually bit his lip and made it bleed a few nights ago.  We have no idea what's causing it.  He doesn't have a diaper rash, or any physical reason.

So that's what's up with Luke, in a nutshell.

I'm still struggling with all this.  I was really hoping to have a label after yesterday's visit.  An explanation.  Some indicator of prognosis.

Taking care of Luke feels very thankless.  With a typical child, there is a give and take in the relationship.  For instance, when I open the bedroom door in the morning, Katie stands up in her crib and says, "Hi mama!"  Luke has no response.  I pick Katie up and start getting her dressed, and Luke starts fussing, which quickly progresses to screaming.  After dressing Katie, I set her down and she toddles off to her chair for breakfast.  By now, Luke is worked up and cries through getting dressed.  Then I take him downstairs and make breakfast for them.  Luke fusses even more urgently once he's in the high chair.  I give Katie her food and sit down to feed Luke.  He is screaming and can barely take a bite.  Once he gets the first gulp down, I have to shovel quickly, or he starts yelling again.  Toward the end of the meal, I can try to get him to pull the spoon to his mouth, but if things slow down too much, he starts slamming his head with his fist or pulling his hair.  Paul took the back off the high chair because he used to slam into it so hard the front legs came up off the floor.  I was afraid he'd tip it over, and his feeding therapist said a high chair with a low back might work better for him.

On the days when I start dressing Luke first, I set him on the floor while I get Katie dressed and he cries.  If I put him on his tummy, he cries and flips onto his back and kicks around the room screaming.  If I put him in a sitting position, he throws himself backward and then kicks around the room screaming.  Notice a theme here?

Imagine dealing with this, day after day, knowing that picking him up isn't going to make it better, because he doesn't care if you hold him or not.  Imagine not being able to comfort your child just by being their mother.

When I do his physical therapy practice with him, he cries, face plants into the floor, and ends up busting his lip open.  Again.  He'd much rather lay on his back and tap the back of his fingers against a wall, chair leg, or bookcase.  By himself, thankyouverymuch.  And honestly?  In the midst of homeschooling, it's easier to just let him lay there and do his thing while I'm busy with the other kids.  But I feel guilty about it.  Katie will periodically check in with me while she plays.  Luke doesn't care if there's anyone else in the room or not.  He doesn't light up when he sees me.  He doesn't reach for me to pick him up unless I force the issue, and even then it's only one hand.  Katie gives kisses and says, "I lu do!"  Luke drools and pinches.  Hard.

It's not even that I'm comparing the two of them to each other, although I know it sounds like I am.  I'm comparing Luke to a typical child, to my expectations of what I thought Luke would be like.

It's been 3 months.  In those 3 months, Luke has learned to sit for longer periods of time, although he now refuses to do so.  He's learned to hold his bottle.  He's learned to reach for his bottle, and sometimes other things.  He's learned to scoot on his back.  He's beginning to learn to chew and drink from cups.

It's hard not to contrast that with Katie, who, in those same 3 months, has learned to walk, is learning to speak English, has developed relationships within the family, and is thriving in general.  This is the hard part of adopting two children at once.  The having a barometer of development to compare and the inevitably finding one child fall short.  I think, however disappointing Luke's delays would have been, they might have been easier on me if he were the only one.  If all my focus could have been on him.

I don't know where I'm going with this.  Maybe I should just stop typing.  Please pray for me.  Being Luke's Mom is a lot harder than I expected it to be.


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