Lengthening Number Four is Fin(ished)

So maybe this song deserves a full life spread but this video is this lengthening only. It’s not perfect but it made me happy to make it and share it here. I heard this particular song for the first time a few months ago and since I didn’t have a theme song for this lengthening… well now I do. I am so amazed that Nick is full weight bearing already. I knew it was possible but wasn’t counting on it.

The look on Nicks face when Dr. Standard told him was pure joy. A few months ago a mom in the support group wrote about how amazing it is to get to watch your child take their first steps more than once. As moms of kids with fibular hemimelia we may witness pre-surgery first steps, then in fixator first steps, then post surgery first steps and possibly many more. We may not get that milestone “on time” but we may get it 10x over! That joy adds up!! My heart is overflowing. I feel privileged to mother this boy and travel this journey with him.

I’ll post more details about todays RIAO visit another time. It was great!

Physical Therapy Fun

Video Update

Since I was not at Monday’s follow up (not my choice I still have arm restrictions), I figured I would let Nicholas do his own update. Things are progressing nicely. He’s got 2.8cm of new bone which means he’s more than 1/2 way there. He’s currently not having pain generally, some discomfort yes and actually pain during pt but most of the time he is pain free. Nick just said he is pain free except for “painful times”. He’s got a sense of humor about it all which I am rather proud of. He’s a an amazing kid and this really is an amazing process.

Video Update: Talking About Stuff & Things

Here’s what Nick was trying to show you in the video:

And for our Spanish speaking FH family:

This was requested by a mom from the Fibular Hemimelia and Limb Lengthening Awareness Group. The FH warrior label did not appeal to me at first but I was totally happy to make it for her and the other families. In fact it made me feel really happy to do it. I love our group so much but word wise “warrior” wasn’t my thing. I am more about being at peace with, living with, working with fibular hemimelia but when I showed it to Nick he liked it a lot. He said “Warriors brave the storm of pain and sadness that comes with fibular hemimelia and then find their is a Silver Lining.” (Thomas the Tank Engine reference) I asked what the silver lining is and he said “That you have equal length legs and scars to prove that you braved the storm of fibular hemimelia. Like a warrior returning from war.”

So there you have it. I am off to do a web chat. Nick is doing homework and we’ll post again soon.

Live From Sinai

Pre Surgery Prep Talk with Nicholas

*** Surgery is not tomorrow*** Nick might have thought we were holding off on posting till it was tomorrow. Surgery is Tuesday.

No Fibula No Problem iMovie

While I have had my computer for over 5 years this was my first time using iMovie. If you are curious I chose the particular song, it’s because I remember so clearly listening to it on the way home from Nick’s first surgery. I have always believed that he is bigger than his body.