Sunday, June 10, 2007

Weekend Update

Whooosh . . . . .

Hear that? That was me - blowing in the door from being on the road for 75 straight hours. Well, maybe not 75, but certainly more hours than are allowed by federal trucking law, I'm sure. I ought to just get a CB handle, a John Deere hat, and take this show on the road. I won't bore you with the details of my weekend travels, but if my backside does not meet the van seat for the next three weeks, that's fine with me. Unfortunately, Rob is away in Kansas City, learning how to be betterstrongerfaster at work and admiring the flat Kansan landscape from the sixteenth floor of his swanky hotel. (He is also eating KC steaks and buying his wife some shiny, shiny baubles, right honey?) All of the above means that I will be planted back in the van sooner than I would like.

The most interesting news of the weekend actually happened on Friday, so this is really more of a Late-Week Update, but let's not split hairs, I say. We had The Boy's appointment with the neurologist on Friday afternoon, and I am still a little shell-shocked by it all. I'd like to say this is the long story short, but I'm sure it will turn into long story longer due to all of my personal ruminations. Take a deep breath, we're jumping in:

I had been very nervous about this appointment for many reasons, not the least of which was the possibility that Dr. L. would look across her desk and tell me I was crazy. (And she's a neurologist, so she's seen some whacked-out brains) I had heard varying reports of this doctor's bedside manner, so I was already feeling intimidated. Some people loved her, and some people loved the other neurologist with the seven month waiting list. I opted to listen to a dear friend and The Boy's occupational therapist, both of whom extolled the virtues of Dr. L. I also admit to being swayed by the fact that, while Dr. L. is no longer taking new patients, she made an exception, for a reason that can be nothing short of divine intervention, and gave us a coveted appointment within a week of cold-calling her. Yeah, that had a little something to do with it.

I dropped the girls off with the aforementioned friend, who agreed to keep them in addition to her own five darlings, then hauled it over to the doctor's office, where I met up with Rob. Two and a half hours later, we were leaving the office and heading back to see if L. had put the girls out on the curb for the gypsies yet. She hadn't - and she even gave us Diet Cokes as we spilled our guts about the appointment. Thank God L. could decipher all of the medical jargon we were throwing out and nod at the appropriate time- I'm not sure I even understand it all. Here's the long and long of it:

We went in to the neurologist because some of The Boy's behaviors have been popping up like madly waving red flags for Pervasive Developmental Disorder. There are too many to go into, but these behaviors have been increasing in intensity and frequency, despite his regular therapies, so I felt that some closer scrutiny would not be amiss. Boy, did we get the closer scrutiny. Dr. L. is nothing if not thorough; she spent an hour with Rob and myself, picking our brains for every detail of The Boy's life. She then spent a half hour with The Boy; we could hear him talking and singing and laughing at the end of the hall. She then brought us back to tell us her thoughts and recommendations, and to answer our questions. I had 4300 thoughts running through my head at the same time, but do you want to know the one lame question I actually asked her? Am I crazy? There are definite things to be concerned about, right? And God bless her straight-shooting, no-nonsense heart, she looked me directly in the eye and said: You are definitely not crazy.

She also said all of this: The Boy has pronounced motor planning delays, coordination delays, modulations delays, apraxias in almost every area, and "pictures" of Asperger's, but not classic Asperger's. She is also concerned about his low muscle tone, poor strength in his hands, and his growth - his feet haven't grown in a year. She wants blood work - lots of blood work - everything from a complete blood count to thyroid levels, carnitine levels, and chromosome work-ups for things like Fragile X. She also wants an MRI of his brain, and a swallowing study due to the hyposensitivity he has in his mouth. If the blood work should come back indicating a need for it, she would also want him to have an upper GI series to see if he has gastric emptying problems. In addition to all of this, she feels very strongly that he has visual perception problems that go beyond your yearly visit to the neighborhood ophthalmologist. She wants him to see a neuro-ophthalmologist to determine if he is even seeing things and processing them properly (she feels that he is not). Breathe, Aimee.

But do you want to know what else she said? She said he is a great kid; one who is tremendously interesting, incredibly intelligent, and heart-breakingly sweet. She said he was so eager to please her by trying everything to the best of his ability. She also said that he will have a great life - that he already has a great life - he will just need to make up extra ground to achieve it in its fullness. There is no reason why he won't be able to do what he wants to do, with the right amount of support and instruction now. She said exactly everything I've always thought about him and wanted for him from his birth. Dr. L. is not a fan of labeling kids just to have something to call them; she feels that it pigeon-holes them with people's perceptions of whatever that label encompasses. She wants people to see The Boy, not a condition. She was also very honest about the fact that we may never have a name, a condition for him. We may never know why the intricate pathways of his brain do not deliver the information in the way they should.

I feel overwhelmed, and scared, and oddly relieved. I feel relieved that she saw all the things I see about The Boy, both his delays and his golden treasure of a heart. I am overwhelmed with all of the medical stuff that needs to be scheduled and completed. And I am scared. Scared that something will come back on his blood work that we won't be able to fix, something permanent or malicious.

But most of all, I am hopeful. I feel that we have been led to this point for a purpose; like a hundred different tumblers have fallen into place so this door could be opened. Despite my fear and my exhaustion and my lack of knowledge, my hope springs eternal.


  1. Wow! Good luck with all of the medical stuff... let me know if you ever need a help with the girls (or just a break from all the kids.) I'm always happy to spend time with them. I'm helping dad open the pool at home next weekend... maybe they can come swimming this summer! Let me know if there's anything I can do to help!

  2. Sounds like you have found a real treasure in that doctor. I will be keeping you all in prayers as you go through the rest of this testing.

  3. My hope for you also springs eternal.

    Be vigilant and pushy and throw your concerns of doctors thinking you're crazy to the wind.

    He is blessed to have you as parents; trust in yourself and what you know in your heart, no matter what the tests try to say.

  4. Wow! Your hope and optimism are inspiring to me, and I can only imagine how you have already led The Boy to the place he is now. I will be praying for you all. If I lived closer I would gladly watch your girls while you are going to the many appointments in your future. Good luck with everything!

  5. Did you hug Dr. L? I want to hug Dr. L.

  6. Thanks you guys!

    I don't necessarily want to turn this into a medical blog or one devoted to the minutiae of therapies, etc, but these have been weighing heavily on me, and it felt good to just get everything out. I am actually feeling fairly calm about it all - except for the genetic testing, that still freaks me out a little. But I have faith and I have people who still come back to read this stuff, even the boring medical jargon.

    I love my internets :)

  7. I admire your strength in the face of all of are an inspiration, love.
    I am in no way surprised that the doctor was less than concerned about Th Boy's quality of life currently and for the future. He has wonderful parents who love and support him to the best of their abilities!
    Way to go, Aimee and Rob!

  8. so glad you found a doc who looked for (and found!) the little boy too, not just for what might be "wrong" with him. sounds like she is really good at what she does.

  9. (((((Aimee))))) Love you guys

  10. Also, Kansas City, Kansas is surprisingly not flat. There are a lot of beautiful rolling hills in eastern Kansas. It's not till you get into the western 2/3 of the state that it's all flattened by glaciers. Just sayin's all.

  11. Anonymous8:02 AM

    I suppose that flat is all from your point of view...Kansas is not so flat as Florida, but it makes Pennsylvania look like the Himalayas.
    I am leaving Kansas today for home. I can't wait to get back to my children and their loving, wonderful, incredible, smart, warm, funny, charming, amazing mother, who has been my wife for nine years, 363 days (not that I'm counting...).
    Love you!

  12. Wow! It sounds like quite the Dr. appt. I'm so glad she took that much time with you and that she is treating a boy and not an illness or syndrome. I'll be praying for you guys during all the other testing. Hugs to you!
    And what's with the hubby's travelling? Mine is in California all week. I'm a single parent and I'm trying not to lose whats left of my mind.

  13. Hang in there, sweetie! Having found a Dr to reassure you and take care of The Boy properly is wonderful. He is a blessing to you, no doubt. As he is a blessing to all. My thoughts and prayers with you!

  14. Anonymous7:58 AM

    wow- hang in there. You are all in our prayers. If there is anything we can do to lend a hand, don't hesitate to ask. Keep us posted.
    Mirabella MOM


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