I decided to start blogging about Jordan from the moment I found out I was pregnant. Jordan was born with a little arm that didn't grow like most babies. Her left arm stopped just above the elbow. Now I'm committed to making sure Jordan gets everything out of life. We feel blessed to be the parents of a very special little girl.


This may be trickier than I thought

So Jordan and I have made it to the Chicago area to start working with Scheck and Siress - a prosthetic company that has many, many offices in the area. I had shot a tiny video clip of us on the road - but the wireless card that I actually turned around to pick up on my way out of town (lost 40 minutes in that move) is chugging along so slowly that I can't even upload a picture. (wah)

I'm sitting in the pitch dark with my computer on, earphones on and just waiting for the girl to go to sleep. I had tried to cuddle, scratch, bribe and then threaten to get her to go to sleep. None of those work so I just quit, turned on the computer and I'm waiting her out. I figure at some point she has to fall asleep. I think we're getting close so I'm trying to type quietly.

Leading up to this trip I had a chance to talk to a local prosthetic guy in my town. I haven't worked with him - but he's known about Jordan's case. (She's kinda famous - just kidding) I told him about this trip and he actually gave me a quick primer on the type of hands and joints that are available for body-powered prosthetics. It's the kind of lesson I wish I had gotten when I first started getting involved in prosthetics. It was so educational that it made me start thinking that there should be some kind of book or booklet that lets parents of limb different kids really know the steps and information that will empower them to become the best possible advocate for their child. I've advocated for Jordan from the start, but I could have been more educated. I have to wrap my mind around the idea and find time away from the thousands of other things I do... But I think a primer for parents would be amazing.

Dang it. The girl is talking to herself again.

Oh. And did I mention I've caught a cold? Of course I did. In the last week I've coordinated an election night webcast that involved four newsrooms and more than 55 people. It went pretty darn well but the coordination and lack of sleep was hard on my body. PLUS my dependence on caffeine is at a new level. I've got to cut back.

Now the girl is saying my name. I'm pretending to not hear her. Any interaction will just make it worse.

I've been plotting our weekend in between our prosthetic appointments. Saturday and Sunday are open days for Jordan to try out her new arm before we go tweaking with it to make sure it really works well. My Mom is flying into Chicago to hang out with us for the weekend. So I'm considering taking the three of us to the new American Girl store in Watertower Place. They have tea and dolls and dolls and dress up stuff and dolls and girly stuff. You know, the kind of stuff that used to make me feel ill until I bought into this having a girl who likes girly stuff business. It's fun. I'm enjoying the inner girl that I have that hasn't really come out since I was really little. Anyway. I'm thinking about getting Jordan a Bitty Baby doll. I really want to give her Kit, but it's for older girls and Jordan should probably be allowed to pick out the girl she wants when she's older. I was also thinking how cool it would be for American Girl to build a doll that looks like Jordan AND has an arm like her. That would be really cool. Unfortunately I contacted their media people but they didn't respond. (Bummer) I still think it would be cool.

Maybe the girl has given up and fallen asleep. I'm afraid to check even though typing on a screen in complete dark is really hard on my eyes.

Wow. When I choose to type a stream of thought, I really stream.

Nope. I was wrong. She's not asleep. Grrr.

Well. If I can find a better way to get online, I hope to post our tiny video post and maybe a picture of Jordan in the car. Tomorrow is when things get really busy. I look forward to what we can build!

Here you go:


Doll Clothes Gal said...

First time on your blog - I love'd your post. And the movie - it was sooo cute. Hope you had a great trip.

Doll Clothes Gal said...

First time on your blog - I love'd your post. And the movie - it was sooo cute. Hope you had a great trip.

twin power mommy said...

What kind of car do you have that has the seat belts built into the seat?