Monday, November 28, 2011

A life update...

It's been awhile since I've done just a life update so I thought I would bore you all with the things going on in my life that keep me up at night...

First, I guess the biggest thing we've got going on right now is that Cooper has been diagnosed with Apraxia. In laymen's words, the brain doesn't know how to tell the mouth how to form words. For a more clinical description, click here. Really, I have been worried about his speech for awhile but kept telling myself that he wasn't talking (much) because his brain was focusing so much on learning to walk. I mean, really, he doesn't have more than 3-5 consistent words. He rarely says mama but calls me Ada so he just changed Dada to a word for me. The thing with Apraxia is that he'll come out with words spontaneously, even 2 word phrases like "what's that?" but he's unable to do them on command. We're in speech therapy at least twice a week and that will be for a long time! It's frustrating but there is one word that he can say on command without fail and that's "love" and I think that says a lot about our household...

Secondly, he's doing awesome in physical and occupational therapy. He was fitted for an SPIO that he wears almost all day. It's a stabilizing vest that he wears on his trunk so that when he's walking, all he really has to worry about is his legs. It's a miracle worker! Luckily, our insurance covered 100% of the cost and I just wish that every kid with hypotonia could have one! He's doing so good but I have to retrain him on not defaulting to crawling. For instance, he'll get really upset during our daily exercises because he wants me to stop so that he can just crawl to whatever we're walking to. I mean, he's only human, and we all want to do what's easiest for us. At this point, it's not strength that's our problem, but teaching him how to balance. I mean most kids start walking when they're 10 to 15 months so they're about, guessing here, 30 inches tall. He has an extra 5 inches that he's got to learn to balance upright. It's tough and he's so tall that conventional walking/push toys are impossible to find.

Here he is in his SPIO and I'm pretty sure that one day, he'll be pissed that I put these pics on the internet, lol...

Third, we have switched to a new neurologists because we were unhappy with the lack of progress on finding a cause for his Hypotonia. Well, they wanted to do a muscle biopsy but why would I do that when it's obviously NOT a muscle issue because he always makes progress and never regresses with his motor developement. Also, he has passed every genetic test related to muscle conditions. So, we were at a stalemate and really, if you don't have anything else to offer then let's get to the point where we can diagnosis him with Benign Congential Hypotonia. He has an another MRI scheduled for December 9th to see if there have been any brain changes since the first MRI that was completed when he was around 9 months old.

Fourth and Finally, I have a 2 year old! He's totally awesome about 99% of the time but he's giving us a run for his money with tantrums. He's speech therapists and ped seem to think it's related to not being able to communicate the way that he wants to which I can imagine has to be super frustrating to anyone, especially a 2 year old. Otherwise, he's so funny, inquistive, and loving. He makes my heart hurt because I just love him so much!

This video is from his speech therapy appointment on Monday. We just LOVE our speech therapists and Cooper has really connected with her. Here they're playing cars and he actually said "boo!" for "boom" right before I started rolling but you'll see him doing his sign for "more"...really, I love this video because he has the sweetest laugh!


  1. You're right. The kid has a great laugh. :oD

  2. His laugh is soooo's contagious! Good luck with the MRI - hope the hospital staff is better this time.

  3. He is so awesome and so are you! I love seeing how far he has come and I cannot wait to see the progress he is currently making! Hope the new doctor works out for you. We're thinking of getting a new endocrine doctor but we've been with this one since LB was diagnosed so I'm a little weary...But if things aren't going the way you want them to - you're the one that's got to change it which you seem to understand completely!
    Keep up the good work Super Cooper and Mama!
    (P.S. Love that he says "Love" on command - that DOES say so much about you guys! I LOVE IT!!!)

  4. What a sweet laugh!

    I've got a six year old who is still in speech therapy and will be for a long time yet. It's okay. He is making progress. I love that Cooper says "love"! So sweet!

  5. If I had a dime for every photo I posted that Asher will be mad about someday I'd be rich! ha! That's what blogs are for. :)

    You're doing such an awesome job with Cooper - it's amazing to see the progress he's making!