A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

A large family, homeschooling, adoption, special needs, whatever strikes my fancy, sort of blog.

Saturday, September 21, 2013

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.  

 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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18 comments:

  1. Praying for some answers, and very soon.

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  2. Prayers as always. You are an amazing mama and have always been. Dont loose sight of that. God loves Luke and has promised Him a future and a hope. Don't forget to give yourself grace. That one is important.

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    1. Grace is hard for me! I tend to beat myself up for not being _________ enough.

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  3. I'm so, so sorry that it's so hard. How frustrating and heartbreaking at the same time. I agree with the above poster - God has indeed given Luke a future and hope. He knew exactly who Luke was before you met him. Even though you were surprised, God was not. He's got Luke and He's got you. (((hugs)))

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    1. Paul teases that Luke is in our family to make (our couch potato child) look active. So at least we can still laugh. Laugh or cry some days.

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  4. I know this has to be frustrating for you. For the liver levels did they check about liver parasites??
    Pat

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    1. That's a good question! Luke sees his GP again next week, so I'm making a post it to remind me to ask about that. Thank you!

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  5. I can't say I completely understand, because no one can know what it's like to walk in your shoes but you, but in many, many ways I do understand so much of this post. The comparing and contrasting two adopted children at once, the endless therapy appointments that involve a lot of crying, the feeding issues, dealing with a child who cries most of the day and there's not a lot you can do about it, trying to balance that child's special needs with many other kids, endless doctor appointments.

    It is exciting that they have found some things that are off in his testing, in that maybe those these can help point the way to an eventual answer for him and you. I am praying for you sweet mama, I get where you are coming from and how challenging, and long term, and sobering it all is and I think your honesty is a strength and your allowing yourself to grieve the loss of what you expected is so, so incredibly healthy. I promise, it will all make a lot more sense one day. You'll look back and go, oooooohhh, I can see those blessings now, I get the why now. You can look back and rejoice and see all the evidence of God's goodness to you and your family. But that takes time. The providence of God is like Hebrew words, it can only be read backwards. And in the mean time, even though positive encouragement is helpful, it's okay if you don't feel that way. Blessed are you Shecki, because you let yourself mourn. I'm telling you this is a richness, not just all the positive God will weave, but the pit as well. You were chosen for this journey, not everyone is, and that says something about you.

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    1. Thank you, Ashley. You're one of my role models. I've always been impressed with the way you've handled everything life has thrown at you with such poise and dignity.

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  6. You are not forgotten. I pray for you regularly. It's just plain hard. Don't stop talking. It's helping you. And while U don't love it when parents get on social media and grips about their kids, that is the exact opposite of what you are doing. You just need a safe place to cent and be honest. Tough is tough and you are blessing, yes, blessing (!) Lukd by being honest. Love to you and prayers for rest, strength and glimmers of hope.
    Shelley

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  7. My heart goes out to you! However, remember, that before all kids make a leap of progress, they often regress to the comfort of the old way before letting it go. I hope this will be true in Luke's case.

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    1. I hope so! I could really go for a leap of progress right about now!

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  8. I spent hours last week on your blog, finding out about your amazing family. I just want to send you our love and support and hope that there is some more positive news for Luke asap <3

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    1. Thank you! Both of Luke's therapy appointments went well today. It must be all the people praying for him.

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  9. Praying for you tonight. I know you are walking a difficult, challenging and refining path, perfectly designed by Luke's Creator. He knows all the ins and outs of Luke's delays and medical issues. He picked you to be his mother, even as inadequate as you feel. In Christ, you are capable. He will do this through you because you are weak. If you were strong and didn't need Him, He couldn't do it. Cry on our shoulders, ask for prayers, be real, but then pick yourself back up and do it again. It will get easier. Get breaks when you can, rest when you can and eat well with vitamins. I believe some place down the road you will be writing to us about the miracles you saw in Luke's life and give God the glory. Just hand on and don't let Satan whisper defeat in your ear. That is a lie from the enemy.

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    1. Thank you. I know I need to take better care of myself. It all gets so overwhelming, it's easier to drown my sorrows in chocolate. I appreciate your prayers!

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