Jordan had the ultimate princess experience for her birthday… Along with getting sweet and fun princess accessories (a crown and a wand) she also got to get her hair done at the Bibbidi Bobbidi Boutique in Cinderella’s castle in the Magic Kingdom. It’s as girly as it gets. Little girls come in and can pick the style of hair they want. It’s super cute and silly. To add to the silly, my mom bought Jordan the fluffiest, prettiest possible princess dress and Cinderella shoes for her birthday. The final result can be seen here:

I know. It’s silly. But to add to the fun, Jordan got to have her birthday dinner at a character dinner with all of the main characters from Cinderella – including Prince Charming, Cinderella and the evil step-mother and step-sisters. Jordan ATE it up. The combination of a girly dinner event and the fluffy dress made her so happy. And to build on that happiness, Jordan fell for Prince Charming. She kicked off her “glass” slippers and the prince kindly put a shoe back on for her (picture can be seen in the scrapbook pages above). He even invited her to dance with him after he danced with Cinderella. She was smitten. You can alao see a little bit of that happiness by watching this moment from her birthday celebration at dinner (You’ll also see this moment in the big Disney video compilation I’m working on):

Will I ever be able to match a birthday like this? Probably not, but I also don’t expect this love of princesses to last forever. She got to absorb the pure fun of it all at a young age… You know, the age when it’s still okay to be a princess without seeming stuck up! The experience is all she’s talks about – especially “her castle” (you know, Cinderella’s castle is now Jordan’s castle) and the prince.

We met with David one more time before heading home. Jordan was pretty darn excited about having a chance to play with him. Since we went to the children’s museum, she has warmed up to actually using her hook.

Here she is using both hands pushing a big exercise ball with David:

But we had this one moment that was unexpected. Jordan got to do something I had mourned we would never get to do with her. You know when you go to a park and watch parents walking with their child and they swing them in the air. I’ve felt little twinges of jealousy watching that simple act. Well, today David and I realized she can do that with the hook arm. And it was really cool. It was so cool that I made sure we had a little video of it.

So freaking cool. (By the way, if you can’t see the videos, feel free to visit all of the videos I took on the trip by clicking here) I decided to drive home right after the appointment to help me get focused for my next trip: China! I leave on Sunday and I have so much to do. So I won’t be able to blog and post stuff as often until I get back. But I have to say I feel pretty good about the direction we’re going for Jordan. I can recall when Jordan was very little and I’d look at a hook arm and feel nervous putting one on my child… Just because of some kind of personal stigma I gave it. I don’t know why. But I’ve moved to a point where I totally see how helpful it can be. We don’t need a thing that looks like a hand. Jordan doesn’t have one! Let’s use tools that can actually help. That’s so much more important.

I can’t wait to help her ride her bike. I’ll make sure to post something when that happens. I promise! Also – I have to say a big thank you here on the blog to David Rotter. He spent so much personal time with Jordan and I. I appreciate all of the care, kindness and interest in Jordan and her needs. I feel really lucky to have worked with him and his staff.

We met up with Jordan’s prosthetist, David Rotter, again today. This time we met on his turf – the University of Illinois-Chicago Medical Center. Getting Jordan’s arm on this morning was pretty easy. I think I bribed her with television or something but she didn’t sqirm or complain or anything. That was pretty nice. Today I had her wear the hook arm – it hooks to stuff and it opens and closes. The only trick to it is she needs to wear a close-fitting t-shirt with it so the arm strap doesn’t rub on her too much. The problem: She’s so tiny they don’t make simple white undershirts for skinny little almost-three-year-olds. I had to buy 4T and I’m still trying to find real undershirts that she can wear under scoop-neck outfits. (wah)

Anyway, we got there and Jordan got to hang out in a Nemo room! She loved it and even got to watch a portion of Finding Nemo. But what she really liked doing was playing with David. They played tug again (which means he drives her around on a roller chair while holding both “hands”). They also played pass the big exercise ball. Oh wow! She loved that. She pushed the ball with both hands and just laughed and laughed. It was awesome. I didn’t get video, but I did get some sweet pictures.

We talked about when to wear the hook and when not to… And David did some tinkering so it isn’t as challenging to put on. (I’m such a hook novice.) I took the arm off for the tinkering and she was not interested in putting it back on. So we just let it be.

I waited to put it back on when I took her to the Chicago Children’s Museum on Navy Pier. She was very excited to go and I asked her to put it on before we went in. For some reason she agreed! So from 1:30 until 6:30 or so, she wore that arm and played and played and played in it. It helped her do a few things – I watched her move the arm a lot more than she did with it yesterday. She remarked how it opened and closed and was VERY proud she could do that on her own. She even bragged about the skill to her dad over the phone! I think the idea of getting a “hand” to actually do what she wants it to do is a novelty after the tough time we had with her myoelectric hand. So all in all, I feel a lot more positive about the hook than I did at the beginning of the day. Jordan surprises me at every turn. Just when I think she’s denying a tool because she just doesn’t like it, she tolerates AND starts to figure out how to use it to her advantage. That’s all I want in this prosthetic experience – to help her see how these tools can help her. Even if it’s a way to keep herself from falling off a chair or help pull herself up a ladder on a playground! I think we’re closer to helping her discover the usefulness of those tools than we were a week ago!

So we wore the new arm today — I decided to have Jordan wear her new bouncy hand — low pressure and simple to put on. Jordan didn’t like that I made her wear it, but I wanted to see when it’s helpful and when it’s in the way.

My first note: She can pound on the wall with TWO hands. And boy did she think that was fun. Before we left for the day she was pounding on a wall — I went in to find out what the heck was going on — I was going to tell her to stop. But then I noticed she was pounding with TWO hands. I moved her to a wall that wasn’t shared with another hotel visitor and let her go crazy.

Next we went to a coffee shop and ate breakfast. What did we learn? The arm gets in the way of holding a cup (she doesn’t have enough bend in her arm and we’re using a set-up as if she was a below-elbow amputee — which means the arm extends from her little arm – so it doesn’t bend much – the gel and her muscle at the base of her arm turns slightly, but not close to as much as a real elbow). The arm helps move food around the table but it also helps push food onto the floor since she isn’t used to having an arm that long. The arm is very helpful when she starts to slide off a chair — I watched her catch herself. That was cool.

Next we went to the American Girl store in Chicago. Wow. That’s one girly girl place. LOTS of dolls. LOTS of girls. LOTS of dolls and girls clothes and accessories. We took Jordan to the Bitty Baby section where she picked out a new doll. She loves the doll. But the arm made it very hard to hug her new doll. She was desperate to carry it, so I removed the arm. The doll stayed with her for the rest of the day (except for a brief stop to eat and buy shoes).

This relatively short amount of time with the arm and the simple, flexible hand made me think about its purpose.
Good times: playing, dancing (probably only in some cases) and possibly gymnastics.
Bad times: carrying big things, gripping, pushing

Tomorrow I’m going to try to put on the arm hook. We’ll see if I can get her into a good enough mood to play around with it. Wish me luck!!

Well… We have an arm to play with over the weekend. Jordan’s new prosthetic has the ability to use three different “hands.” A hook that opens and closes when Jordan uses her shoulders, a hand with a little flexibility and offers simple stability and a hand that holds onto a bike! (yahoo!)

Of all three “hands,” Jordan likes the bike one the most. Maybe because it makes her look like a Lego person.

Do you see the similarity? I think that’s kind of cool – especially since we live in a household full of Lego toys.

We’re off to the city tomorrow to have fun and check out the mecca of American Girl.

We’re getting closer to an arm that works for Miss Jordan. We just tried on her new arm with a hand that bounces! It’s slightly flexible and just gives Jordan extra stability. She almost immediately took a liking to it when she realized she can bounce or clap with both hands!

Bouncing:

Clapping:

I also quickly interviewed her… She’s not that interested in getting interviewed.

If you can’t watch, you can visit my collection of video from this trip here.

We are at Schreck and Siress and working with David Rotter – who was recommended by a thousand different people (okay, actually ten). Anyway, he’s patiently helping Jordan prepare for her first body powered prosthetic. I caught this moment when she tried to move the hand for the first time with David’s help.

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: