Wednesday, July 15, 2009

I'm still here...sorry for the lack of updates...nothing really different is going on. Same old, same old. The days are ok mostly unless he is too active and then he tends to limp and be very stiff. The nights are still rotten for the most part. We have maybe 2 or 3 nights a week of sleeping all night w/out any pain. I can't seem to tie the night time pain to being overly active because it happens on a day that he's not done much at all as well. I am beginning to think it's just "one of those things" with perthes that sometimes pain is unavoidable, unfortunately. My sweet boy has a birthday coming up. He'll be turning 5! We are going on vacation the first week of August with my BFF and her family so we have quite a good bit coming up to look forward to. Here's a picture of Dalton and his cousin Sara Jane (my sister's little girl). This was taken on July 4th.


We are still waiting on the pediatric abduction pillow...having massive trouble finding it and now it's been 2 weeks since our appointment with Dr. Standard and I'm about to freak bc we haven't started using the pillow yet. No place seems to have a pediatric size. Dr. S is doing a chat with his perthes followers (lol...I say that because we joke on our perthes board that we are his groupies..haha) on Thursday so I can ask him what he advises.

Otherwise, our days are made up of playing in the pool, PT appointments, lots of reading and art activities, etc. I think most of you readers know that we homeschool. We are starting back next Monday and Dalton will "officially" be a kindergartener!! Wooha!! I just don't know what happened to my little curly haired baby!

A lady on our perthes board posted just recently that Dr. Standard has now released her son to run and jump and be a little boy again. He had the external fixator on in December and wore it for 4 months and then followed it up with bracing. Dr. S said his hip looks great now. I long for the day that I can make a post like that. I sat and read her post and cried like a baby...so happy for them, yet my mind filled with so many questions about when our time will come. I know we've only known about perthes since December 27, 2008..not quite 7 months out yet. I can't help but wonder if we had started some PT from the get-go if we would be further towards our goal of healing by now. I guess we can't question..we can just move forward and deal with whatever is thrown our way now. I just thank God for Dr. Standard and what he means to us and to so many countless others. He's truly an angel that's been sent our way!
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3 comments:

  1. 5onfaithJuly 17, 2009 at 3:57 PM

    Lori - your time will come! No question! I know that it's hard, but try not to think too much about the shoulda, woulda, couldas, they can eat you up inside. You have done so much and I continue to say that your knowledge, selflessness, determination and devotion are heralding! I also look forward to the day for that post - but in the meantime will continue to be prayful in St. Louis!

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  2. KarlaJuly 20, 2009 at 7:59 AM

    Don't question yourself...there is nothing you can do to speed up the healing process. Once the bone starts to regrow, then he will probably get the OK to be active again. Each kid follows his/her own timeline. We were told expect 18 months for each stage. So, we expected that our son might get the ok to be active again around Dec 2008 (he was diagnosed in May 2007 when he was almost six). He actually got the ok in July 2008, much sooner than we had ever hoped for. Since then, he has been playing kickball at recess, played his first season of hockey, and played his first season of baseball, including being asked to be on an older summer team because he was so good at it!

    He sometimes has a little limp and occasionally complains of pain if he has been super active (like last week, he was at hockey camp during the day and played in baseball games a couple of nights in the same week).

    But life is good for him! I mentioned having sports equipment taking over our house and a friend said, "that is wonderful" since there was a time we didn't know if he'd ever play sports.

    There is a light at the end of the tunnel! Just take it one day at a time!

    libkarla@yahoo.com (Karla and son William)

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  3. HuaJuly 21, 2009 at 4:52 PM

    Hi Lori,


    I hope your up coming vacation is a blast! I'm Hua, the director of Wellsphere's HealthBlogger Network, a network of over 2,000 of the best health writers on the web (including doctors, nurses, healthy living professionals, and expert patients). I think your blog would be a great addition to the Network, and I'd like to invite you to learn more about it and apply to join at http://www.wellsphere.com/health-blogger. Once approved by our Chief Medical Officer, your posts will be republished on Wellsphere where they will be available to over 5 million monthly visitors who come to the site looking for health information and support. There’s no cost and no extra work for you! The HealthBlogger page (http://www.wellsphere.com/health-blogger) provides details about participation, but if you have any questions please feel free to email me at hua@wellsphere.com.

    Best,
    Hua

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