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Using the digital kit, "Running and Jumping" by Vinnie Pierce.

Wednesday, February 2, 2011


I can hardly believe that you are 13 months old. It's hard to imagine we ever had a life without you in it. The past year has been such a roller coaster but its a ride I wouldn't have missed for anything.

This month marks one year since we first heard about RCDP . This first year has been such a whirlwind of Doctors and hospitals and surgeries and bills . As I read back over the few blog entries I have made I see so many times that I mentioned how sad I was or how frustrating situations were. I'm making it my mission to update this blog every couple of days this year because I never want you to go back and read these letters and think that you somehow made me sad or depressed all the time.

Sure I have had my moments of frustration but the overriding theme of this year has definitely been one of JOY. You are truly amazing. You have the most tenacious spirit of anyone I have ever met. You NEVER stop trying . You may not do things the conventional way but you figure out a way to get them done!

You move all over this house. Its not exactly crawling but its definitely forward motion. Some evenings I can tell that your ab muscles are so sore from all the moving you've done all day but you just keep on going.
Your occupational therapist is always saying that as soon she writes a goal for you you immediately master it. You are an overachiever without a doubt.

Your most recent favorite thing to do is screech at the top of your lungs. The problem with this is that you want your sisters to screech first so you can copy them. It totally makes my ears ring but its so worth it to see you laugh.

You had a spinal decompression surgery back in November and I think that has made a world of difference for you. Your muscles seem looser and you are so much more flexible in your movements.

Well I have so much more to write ( January was a very eventful month for us ) but Rory will not stay in bed and she's waking up the whole house in the process so this will have to be continued......

1 comment:

  1. Hi
    My name is Jenna and I came across your site when I was searching some information on Chondrodysplasia which i have. Marley is an inspiration and a hero. There is only one other case that has the same type of the disease that I have and he lives in Switzerland.
    My site: