Monday, May 3, 2010




This is Andrew at about 17 months. As you can see he is very excited to be out and about:)



Andrew has been slowly making progress in the last couple of months. He now "scoots" around in the crawling position but is not getting much lateral movement from the hips. We are currently looking at surgery on may 12th to help straighten his legs out. He will be put in full leg casts for 8-12 weeks that will be adjusted weekly. At this time he will also be undergoing another tonotomy (heel chord lengthening) both procedures will be done under general anaesthetic at hospital for joint diseases. We will be staying over night, which should be very interesting. I hope they understand I will will not be leaving either? Think I could fit in the hospital crib with him? good thing I dropped a pound or two;)


Unfortunately he will be casted most of the summer and I am tyring to figure out ways to help him still enjoy his summer without the use of the pool, sprinklers etc:( I know he will be just as resilient as he has been in the past. This procedure is the next step towards allowing Andrew to start walking eventually. It seems that currently his physical therapy has gotten him as far as he could possibly get. As a matter of fact his doctors are surprised he has the ability to do what he has with his physical limitations. Like I said, he is determined and stubborn which will get him very far.


well, that's all for now......send him some good vibes:) will keep you all posted post surgery!


5 comments:

  1. God bless all of you. HJD, hosp for jt disease, is a good institution. i worked there for awhile and both ira and i had surgery there with an old friend of mine who is an orthopedist on staff at NYU/HJD.
    hope all the surgery goes well and helps your gorgeous little guy be more mobile.
    love
    lori

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  2. Our prayers are with you during this time. You definately have a little trooper and we know that everything will work out. Looking forward to spending more time with you all over the summer. Love you! Sandra

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  3. Hi Mazra!

    Is this blog still active?
    I read iit carefully and would like to express my respect for what you and your son 8in facet the whole family)) have manged so far.
    I gave birth to twin girls last August. And one of them (I beleive too due to her positioning) has arthrogryposis - but in her arms not the legs. As your Andrew, she is fo strong and willing to learn.

    I'd be interested to hear more about how you dealt and are still manageing the AMC - what kinf of therapy your are doing, how the twin relation is affected tec.

    I was so good to read about such similar feelings - like seeing one child already doing soething and the other just looking at it, not yet beeing able tp perform the same movement.

    Wish you all the best!!
    Sarah
    (Berlin, Germany)

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  4. uups - so sorry for the many spelling mistakes - it was late night here and I was already almost aspleep.

    hope you are well and looking forward to hearing from you - Sarah

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  5. Hi Mazra! My name is Bethany and I found your blog just this week. My 4 month old Ezra also seems to have arthropygrosis in his feet, knees, & hips. As you’ve said in previous posts, it’s a frustrating spot to find yourself as a parent because SO many questions are met with “I don’t know.” We like Ezra’s orthopedic doctor, but she doesn’t have a lot of experience with arthropygrosis and we are considering switching to Shriners in Philadelphia. I’m just wondering how your family is doing now and if you have advice for someone starting this journey. I know this blog is old, but I’d love a response if time allows. Bethany (bjnissley@gmail.com)

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