The Skinny

So we woke up bright and early and headed across the lake today for Charlie’s procedure. I went alone, which is typical. I decided a long time ago that I wasn’t going to waste my husband’s precious vacation sitting around in hospital rooms.

They admitted us almost as soon as we got there, and then we waited about five minutes longer than forever. Really, it was about three hours, but when you’re spending your time with an under-fed, cranky toddler, it’s a long time.

I had basically resigned myself to the worst of all possibilities–a potentially life-threatening syndrome that would require surgery ASAP.

I needn’t have bothered.

Doctor came and said that he shows no signs of tachycardia and no signs of Wolff Parkinson White Syndrome. We are going to discontinue his heart medicine immediately. How cool is that? We’ll check back in a month after he’s completely medicine free, but the doctor was extremely optimistic.

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I have other interesting news as well.

ABR is not a quick-fix. The more hours you build, the more changes you see. You really have to have faith in the beginning that you’re heading somewhere.

I have seen some teeny, tiny changes, though. As soon as we started the chest compressions I noticed that Charlie started making more and longer noises. This is minor, but it IS a change. I can also see an almost imperceptible change in his rib cage. When we left for Montreal, it was really angular. The evaluator said that his collapse was “significant.” Well, he looks slightly less pointy. Slightly. I thought I was just imagining it, but I asked my husband if he noticed anything different and he said the exact same thing. Of course, I’ve also been working on his neck and that looks exactly the same.

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Comments

  1. I am very happy for you and Charlie and Charlie’s Dad. And just a bit peaved (at the MD) for the scare.

    I will continue to read your blog with interest, Bird.

  2. White Hot Magik says:

    Wow that is great. A good news day, I like those.

  3. Great report!

    Not nearly as good as the clean cardio bill of health, but also exciting that you are already seeing changes with the ABR. I am not perceptive about those types of things, so I have no doubt that the trainers/Leonid will notice changes before I do.

  4. MeghatronsMom says:

    Woooooohooooooo! Sounds like two good pieces of news! That is awesome! I am so glad he able to get off heart meds! Keep up the great ABR work! I am very interested in all of you doing it & am anxious to read of how it goes.

  5. Very relieved for you & Charlie.

    Keep up the good work!

  6. mamaterapeuta says:

    Great news!!!!!!!! I’m happy to ear this. ABout ABR, we also saw changes the very first week, and then some new ones every other week for a couple of months.

    In aour experiences, big changes take months (like sitting) but there are always small ones :)

  7. -clevergirl says:

    Great news! I am so glad Charlie is ok!

  8. Yeah!!!! I’m glad Charlie doesn’t need heart medicine. And ABR changes already.. That’s fantastic!

  9. Mama T-
    Our main goal is to keep Charlie’s structure as healthy as possible. We’re trying to avoid the myriad of orthopedic surgeries that the doctors recommend for CP kids. If we see functional changes, then great, but it’s really just a bonus.

  10. WooHoo! Good news is always welcome I am sure.

    The ABR stuff seems so simple when you describe it that it is hard to believe (for me) that something so simple would work. You would think something so simple would be more mainstream and recommended to everyone that it would benefit.

  11. Nadine Hightower says:

    It sounds like a progressive thing. The more you do it the more progress you will see….keep it up.
    And I think that doctors jump to conclusions when they do not see the patient on a regular basis. I have watched a doctor fresh from a “continuing education” course start making diagnoses for a new disorder he just learned about…he was an ass.
    But I look at it like this. That’s one less thing you have to deal with….a been there done that thing. Move on.

    Charlie is an amazing baby. He has proved them wrong at every turn. Sure he has had it rough but he’s a fighter.

    That pix of him sitting in the high chair…the look on his face is like he’s sayin’ “And I want it now!”

    Hang in there….hey, what about trick or treating?? You haven’t mentioned a word.

    Hugs!

  12. finally, I can leave a comment….I’ve been trying for a couple of days but it kept booting me out….gotta love computers.

    Anyway….great news…
    ….and I went through a lot of your pics again and I can’t believe how big Charlie’s getting…what a doll.

  13. Small Town Girl says:

    Well that’s great news about the heart meds!

    You know, if you put in a lot of effort, you usually get good results. That’s great that Charlie’s already showing some changes after only a week or so of therapy. Here’s hoping he keeps showing improvement!

  14. Oh, I’m so happy for you and Charlie. Have a nice weekend!

  15. Some change is better than nothing–at least there’s something you can see–makes that fiath thing easier. 😉

  16. Wonderful news!

  17. Great news!!!

    And that’s awesome that you’re already seeing some results from the ABR!

  18. EMBelieve says:

    Hello Bird!
    What was Charlie for Halloween?
    Matthew was Lil’ Frankie.
    Happy Halloween!

    Eugenia

  19. Sweet!
    And if you say there’s a difference, be it big or small, in Charlie, I bet there is–don’t mothers always know these things? I’m so glad to read all this good news today.

  20. blairspage says:

    I’m so excited that you got good news! GO CHARLIE! It does suck waiting around in hospital rooms!

    Big Hugs to you… keep movin’ on! You are a wonderful Momma!

    Hugs – Tiffany

  21. Hi Eugenia! Charlie was a pirate for Halloween. Actually, we all were and we also decorated the house with pirate stuff. Our neighborhood has a “block party” and goes all out, so we try to participate. Matthew looks precious!