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.

Monday, October 13, 2014

Update on Luke


School continues to go well for Luke.  He's got regular morning and afternoon bus drivers now, which is nice.  At the beginning of the year, he had lots of different drivers until they got the routes figured out and assigned.

At his appointment at the MIND Institute last month, it was discovered that the genetic test his neurologist ordered didn't get put into the system correctly, so the results we thought we were waiting on never even got tested for.  I have to wonder what they did with the blood they took from him...

We're now waiting for insurance to authorize the genetic test.  16 months in, and sometimes I feel like we're no closer to an answer to the "What's wrong with him?" we get asked whenever we take him out.  I haven't yet developed a comfortable answer to that question.  I usually admit we don't really know and end up launching into a big old explanation.  But I feel that taking the "easy" route and throwing down the autism card isn't really accurate, either.  Yes, he meets the criteria for an autism diagnosis, but we don't know what's causing his symptoms.  If I say, "He's autistic," people make assumptions based on the autistic person or people that they know, and those assumptions don't line up with Luke's issues.

Like the time I was holding him while he was throwing a fit, and someone told me, "He wants to get down and run around."  I don't think smoke came out my ears, but if there's a less helpful thing to say, I haven't heard it yet.  I would love to have him "get down and run around," believe me!  But if I put him down, he's going to start slamming his head on the floor, and then you'll really look at me funny.


We finally started Luke on anti-seizure medication.  When we first noticed them, we had to really wait and watch to see one.  But they've gotten more and more frequent in the last few months.  His school called, concerned, because he'd had 17 in a row one day, and they wanted to know if that was normal.  17 seizures (during a 2 hour class) is not normal for anyone, but it can be typical for Luke these days.  We decided he can't possibly be learning with the constant electrical storm going on in his head, so we're easing him into medication.  We started a week ago, and today we up the bedtime dose.  Next week, we'll up the morning dose, too.  We're still seeing seizures at this point, but I'm hopeful that this, or one of the other drug options, will help us manage those.


Paul took Luke in for another MRI Friday.  It's been over a year since his last one, and the neurologist wants to see what's changed in there.  I'm anxious to hear, too.  This should give us some indication if Luke's is a static condition, or if something is deteriorating.


Paul said he did well coming out of anesthesia.  Next week, he sees Genetics, and they may have additional tests that they want to run when we do the bloodwork for the genetic test that UCSF recommended in February.

The following week, Luke sees his Primary Care doctor.  Who is leaving the practice.  So we'll have to choose a new one.  I'm hoping she'll sign the paperwork for a handicap placard for Luke, since his neurologist wouldn't.  When we're out with the girls, we can use their placards, but Luke doesn't have his own yet, even though he's the one with the wheelchair, so for appointments where it's just him, a placard would be helpful.  Had I known we'd be eligible for 3 of them someday, I would have just gotten handicapped plates on the van in 2010 when I was given the choice with Hannah.

Still trying to get the spinal tap and muscle biopsy scheduled.  Hoping to have those done by the end of the year.  

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18 comments:

  1. Do you know why the neurologist wouldn't sign the placard application? That seems so strange!

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    1. Before we got the wheelchair, we used to take Luke into the office in a stroller. I think the doctor saw "stroller" and thought "baby" but the reality is, he's 3.

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  2. How scary not to know answers. Praying that the doctors will figure out what is wrong with your son, and how to help him best!

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  3. There's a lot going on with that little guy. I find myself not being very patient with people's comments any more. If someone had said to me that he just wants to get down and run around, I'd look at them and say, "He can't even walk! What he wants to do is get down on the floor and bang his head." Or, if I was in a really bad mood, I'd have said, "Okay, here, take him by the hand and give it a try!"

    I'm sick to death of people's comments about one of my kids who is totally attention-seeking. She pretends to be scared or acts like a baby in order to illicit attention and it's really holding up the family when we're on outings. She's very convincing, and when I try to tell her to cut it out or help her get over something that's a sensory thing, people think I'm being mean to her.

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  4. Wow, thanks for the update. You are all in our prayers. Leslie

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  5. Praying for you, dear friend. I love your updates; they give me concrete things to pray for you. Love you! <3

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    1. Thank you, Charlotte. I'm pretty sure everyone's prayers are the only thing that's gotten us this far.

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  6. Continuing to pray for your sweet boy!

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  7. How is your marriage holding up with such a demanding situation? I can't even imagine the strain!!! Hubby and I find it difficult to deal with outsiders opinions too and our kid can walk. I hear from people, oh I am sure she will talk soon. Its exhausting to say over and over again, we are still waiting and praying for the day she does anything like a child her age. At 4 years old people expect a LOT!!! So I totally get it, but wow is it hard to see neighbors kids doing all that I could only dream of our child doing. It wrecks a person/ family to want so bad to see that child be like other kids and fear it may never happen. The emotional toll is heartbreaking! I imagine Paul had to take over some of his care, if not a lot of it as you are spent! ( hugs )

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    1. It's a strain. Fortunately, after 2 decades together, we have a strong foundation. I think if we were on the same page, it would be easier. Paul does a lot to help with Luke, which I really respect him for.

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    2. I have been with my hubby nearly 30 years and we are on the same page about most things and yet, I know neither of us would do well in such a stressful situation as yours! Is Paul feeling different then you in regards to Luke? Men seem to take a different approach to life, determination and drive rule ... Whereas us women, its all about the reality and how we " feel" about things that dictates our emotions and lives. Our differing opinions really can put a damper on decision making. Luke needs a family, but so do you and with his issues, its important all your family is taken into consideration with all your choices, so I pray Paul sees however he feels is important, of coarse, but so is how YOU feel. Your a Mama with a wonderful hubby and family and the sticky situation you are in stinks, but in the end, you need peace in your life again! I so get how you feel and pray that Your sweetie, Paul sees your side too... (hugs)

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    3. Thank you. I appreciate your prayers. We're both hoping the other one will bend a bit more, at this point.

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  8. This sounds like quite the journey for sure. I'll be praying for you and your family. As a mother, my heart breaks for you because I know you have be going through a load of emotions right now.

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    1. Thank you, Crystal. I spent the summer hoping that things would be easier with him in school part of the day, but that hasn't been the way it worked out. :/ I appreciate your prayers.

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