Tuesday, August 30, 2011


We are blessed.  I have said it before and I will say it again - I have wonderful, caring, loving friends/blogger moms.  We share a common bond in that our children have been diagnosed with WHS.  We chat on-line, facebook and follow each other's blogs.  Most of these friends I have never met in person but I feel like we have known each other for years.  They have all been so supportive and comforting to me because they know what it's like to travel this special journey. 

Yesterday UPS knocked on our door and had a very large box with Dylan's name on it.   Inside was a reverse walker and a set of very small, but perfectly sized Suresteps!  These were a gift from Dylan's sweet friend Norrah.  Norrah had grown out of the Suresteps and no longer needed the walker, because she is walking on her own, and she wanted Dylan to have them.  I feel so very blessed and fortunate to have Norrah and her family in our life.  Thank you so much from the bottom of my heart.  I hope one day to be able to meet all of these friends in person but for now email and blogging will have to do.

Dylan can definitely rock the pink swirls!  The Surestep orthotics are something that I have been fighting to get approved through CCS and have had very little success.  They feel that because they already approved his DAFOs (which are also orthotics that wrap around his foot and go all the way up to just under his knee - (that he hates, mind you and cries whenever he has them on) they don't need to approve anything else right now.  My position on it is that is, well... lets just say I do not agree. 

Trying to see what this is all about.  He did really great standing and holding on.  The reverse walker will be Dylan's next step after he masters the gait trainer (which we should have in about four weeks).  He still needs more pelvic stability and strength but I am stoked that we have one now and don't have to go through the hassle with the insurance company and CCS in the future. 


  1. Wow! That is so great. What a wonderful idea to pass on outgrown equipment. Aren't orthotics custom made for the wearer? When Adi got hers, every dimension of her feet was measured. It's a shame they won't approve you. You probably tried this, but what if you put tights on Dylan (thick cotton) so that the plastic isn't right on his skin. Maybe that's what bothering him.

    I hope it all works out! Adi started walking a few months after getting her orthotics. I feel they helped a great deal!

  2. Ester - Suresteps are a bit different than other orthotics. There are only two measurements taken before they are made so there is a greater chance that they can be shared. Especially by two kiddos with the same skinny feet. :) They only go from heel to below the ball of the foot.

    Kristy, HE LOOKS AMAZING in that walker. I am SO HAPPY. Norrah first got aquainted with hers by simply standing in it. He will be using it in no time!!! We put a bike basket on the back of hers once she started using it so that she could put toys in and "carry" them along with her.

    I had no idea that insurance would not cover his Suresteps - ridiculous. Especially considering those little things are thousands of dollars... for plastic and velcro. Since they seem to fit perfectly I will send all of Norrah's old ones his way when she grows out of them. (Sadly this next pair has flowers but if you fold the socks down over then no one will know :)) I will be sure to specifically ask for gender neutral ones next time and they can share. YAY!!!

    Love you - and WE WILL MEET! I have so many reasons to be in California and you guys are one of them. We will get there one of these days.

  3. I LOVE it!!!!!!! I'm so glad you got it!!! And that he is rockin' the walker! L.O.V.E.

  4. Go Dylan~ he looks amazing with the walker, and he will be using it in no time! Sending big, big hugs!! XO

  5. He looks perfect in it. And just the right size!!! How wonderfully thoughtful and generous of them to send it to him... I just love this community of families.

  6. What an exciting UPS package! Dylan can totally rock the pink swirls. Real men wear pink! That's what Toller always says.

    I love the last picture. It's like he is saying, "I will have this figured out in no time!"


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