Mixed feelings

I had a big meeting with the public school district yesterday to decide if she would qualify for their Individualized Education Program or IEP. It's a specialized plan for a child with disabilities in a learning environment. I had mixed feelings about the process since I don't consider Jordan disabled... But I kind of wanted an IEP so I could continue to get assistance in the expenses needed to keep Jordan in occupational and physical therapy.

The school district spent HOURS working on her case. And their conclusion: She's not disabled. To hear them say that is wonderful. I'm proud of all the hard work we've done to make sure Jordan is self-able and confident. She's a take charge kind of girl and we've worked very hard to keep her from falling behind in any type of physical skills. At the same time I'm bummed because her therapy becomes an out-of-pocket expense. Interestingly, the school district said they plan to monitor Jordan to see if she ever needs more analysis and assistance. My guess is that I'll never let her fall behind enough to have that happen.

So I'm in a mixed place... I'm honored to know they consider Jordan so well adjusted and able. They complimented us on our parenting and advocacy. It's just kind of hard knowing all of the resources out there that can help her -- but we can't tap into them because we've worked so hard to get where we are. It's kind of funny. They will only help kids that are behind in skills... And I want to work hard to make sure Jordan never falls behind. Shouldn't our system have that same attitude? Prevention first?

Today I had another really cool moment with Jordan. I was working on dinner when Jordan pulled out her tricycle. I keep it in the house... I figured why not. Anyway... She pulled it out and ASKED for her bike arm. Wow. She's never done that before. But that's the whole point to her prosthetic -- wear it when she needs it. Not only did she want to put on her arm... She wanted to do it. She didn't put it on perfectly... but she did both steps of rolling on the arm gel sleep and clicking her arm on. She's so amazingly independent. She didn't ride her tricycle very long -- She needs her seat moved further back so the bike arm is easier to use. That lack of an elbow really makes this a challenge. But as Jordan proves every second, she'll find a way.

Holiday preview

We made it to Florida! We also had a chance to celebrate an early Christmas with Jordan and Cameron's Poppy and Grandma (aka my in-laws)! They had a ball opening gifts. We also got to drive long distances with the kids in the van -- for the first time we had them sitting in different rows with two separate DVD players.

It changed EVERYTHING. Our drive was relatively peaceful... happy and enjoyable. I think we will travel this way from now on. It was too nice. No fighting and relatively few outburst from either kid.

I did figure out an additional way to help Jordan keep up with her toys without them all falling to her left side and she can't reach it. It's a soft tray that attaches with a belt behind her so it doesn't fall down. She was able to play with smaller toys and eat food without losing stuff. I highly recommend it!!

Today we enjoyed a little time in my parents' pool (it was freezing cold) and riding bikes. Jordan was exhausted but we did pull the bike arm out for a little while. Not long enough for her to be willing to let me leave and find a camera. She was exhausted by the end of the day and even fell asleep on the floor. Hopefully she'll get a good night's sleep so we can have a really fun day tomorrow!

So much to catch up on.

Here is a picture of Jordan right before she walked into her new school yesterday. She was so excited. I had a new backpack to give her. She spent all morning wearing it and saying: "I'm ready to go to school!" Her first day in the classroom went pretty well. She played with all kinds of new friends and was so happy to tell me a few things about her day.

From what she had to say, she was happy with most kids but one made her sad. She doesn't know everyone's name yet, so when I asked her who made her sad, she just said "somebody." At this point I have a pretty good memory of names for about half of her class. To make it a little tricky, the classroom has many early education college students working with the kids - so that's another set of names I need to learn! With the semester ending soon, I'm guessing many of them are leaving so that's a little less pressure for me! Jordan's new classroom is a great place for her to learn while college students learn from her. It's a great environment and I'm excited that she's there. The teacher-student ratio is just crazy small because of the connection to the university. There's an observation booth to help researchers and instructors learn and teach. I could sneak in and see how things are going if I want to! The coolest part was ending my day yesterday by just walking over to Jordan's school and walking with her to my car in the campus parking garage. That little perk will be hard to let go of when I end my current fellowship and move back to work more often at the TV station.

Before Jordan officially started at her school, she visited a couple of times last week. On Thursday I went in with her and helped teach the kids about her difference so they weren't confused, scared or just under educated about why Jordan is just like them - just with one hand. I had the teacher read Harry, Willy and Carrothead. It's about how one friend had one hand, one friend had red hair and another friend kept making fun of the redhead. We talked about how the teacher needs glasses to see so that doesn't make her strange, she just needs those glasses to help - and that's exactly why Jordan uses a prosthetic arm (I encouraged the name "helper arm"). Jordan didn't wear her arm that day so I could pass it around for the kids to see. They were stunned and amazed. They had a lot of questions, but mostly to me and not her. One kid asked Jordan why she had one hand and she just said "I don't know." I encouraged her to say "That's just how I was born." Either way, Jordan was more excited about having one of her own books read in the class than the fuss kids were making about her difference. She seems completely not shocked, stunned or concerned about the kids asking questions. I made it clear to the kids that it's okay to ask questions, but it isn't okay to grab Jordan's helper arm or little arm without asking. I saw two kids ask Jordan to show her little arm while they were playing and Jordan was kind to show it off. Then they all moved on and played together. I was really happy to see the kids learn a lot and seem really okay with it. Only one little boy kept saying: "Ewwww. Gross!" The teacher said she'd make sure she talks to his moms to make sure they helped him better digest Jordan's difference. I also left behind a book called The Making of My Special Hand. It gets kind of specific on how a little girl had a myoelectric hand made for her. It shows all kinds of examples of hands and what it takes to get one made. The teacher thinks her more scientific kids will really enjoy that one.

On Jordan's last day at her old school, I got weepy. It's hard to walk away from somewhere you've spent so much time with. I'd have one or both kids in that school for the last five year. Five years. That's the longest I've lived anywhere in my life! Now I've lived here for five and a half years with not plans of moving away. It's a great feeling. But that long connection means it was much harder to leave. Of course, Jordan didn't seem to mind at all. She spent all day Friday telling everyone it was her last day of school. She wasn't sad, she was excited.

Over the weekend, we were VERY lucky to have a visit from my aunt and uncle. I love them both a ton and it's so great to have the kids have fun and play with them. They spent a lot of time playing board games - including Monopoly. I caught a really cool moment when Jordan was sitting on my Aunt Jan's lap trying to roll the dice with BOTH hands. It was so cute. It was also special to be able to have time that was quiet, calm and not as stressful as the last month or so has been with all of my travel and deadlines. It has clearly affected the kids - they're even more stubborn and having a tough time with the word "no." Traditional stuff after a lot of grandparent time. I'll get them back to normal just in time to get spoiled for the holidays. That's okay. It comes with the job of parent. As my mom said: Four steps forward, and one step back. Exhausting kids or not, it was awesome to simply hang out, play games and have fun with my aunt and uncle. Plus, I spent so much time cleaning my house, there is a less stressful feel to it. We'll see how long I can make that last!

Preparing for a new school

Jordan and I had her first transition time at her new school today... and for some reason, I wasn't prepared to help teach the class about Jordan's difference. I bought books a year ago. I've saved dozens of accounts from other parents what they did when they brought their child to a new school. But for some reason I didn't think I'd have to work on this presentation to little kids until elementary school. I guess it's just because I didn't really plan to move her to a new school -- the waiting list to get into her new preschool is very long. I didn't see us moving there. I'm thrilled but a little nervous. I want to make sure these kids learn about Jordan, talk about it and move on once they feel informed enough.

So tomorrow I'm taking Jordan to the school after dance class. I'm going to read a book called Harry, Willy and Carrothead. It shows kids how some people stare and say things because of a missing arm and others get it because of the color of their hair. I think we may also talk about how the main teacher in the classroom has glasses and that's how we consider Jordan's prosthetic. It's helpful! Glasses help you see. A prosthetic help you hold onto things and pick things up and even help you from falling! I hope it goes well.

The kids in the classroom were just noticing Jordan's difference - we wore the bouncy hand. Jordan let the small set of kids touch her arm and she didn't mind. But the greatest thing is the kids stopped asking questions when we told them that I'll be back tomorrow to tell them more about Jordan.

Special Exposure Wednesday

I've been out of town for a number of Wednesdays... So I figured I could add an additional picture of Jordan working with her new arm. She has three different hands. This is the one she really needs to work on with her occupational therapist. It was awesome to watch them work together this week and see how Jordan can really catch on how to make it work... She just needs encouragement to use it. During lunch, she was encouraged to use her "hand" to help push her peaches into a spoon. It was a little hard for me to watch. But she's a trooper and I know she'll find a way to make this all work as she grows.

Home again... Lots to do

I got back from China and went straight to work with Jordan! I met up with her occupational therapist to finally show her how Jordan's new prosthetic works. It was incredible to watch how Jordan took to naturally using the "hand" after we convinced her to work on it. (She was a little stubborn since I was there)

It was cool to see what Jordan can and cannot do... Right after wroking with toys, Jordan had lunch and I could see the big challenges she has during that time. Holding the plate, holding a cup and trying to scoop up food like the slippery peaches she was eating today. It's kind of hard to see her deal with a simple challenge like that -- simple to me. Not simple for her. I guess I expect her to fail so she can learn... but man, it's hard to watch her fail. I know she always finds a solution, so I'm not that worried. It's just hard to watch sometimes. I just want to swoop in and help - but she needs to be completely self-sufficient. I know she will be able to do that.

After I took a quick jetlag nap, Randy and I got to go to orientation at Jordan's new school. I got to see her classroom and play with some of the kids in the playground. I met a really sweet boy who is in Jordan's new class. I'm already a big fan. He's already invited me to his house to play. Jordan's room is big with all kinds of big windows. I'll post pictures soon!

Before I run off....

I'm in a hotel just hours away from when I need to hop on a plane towards Shanghai for work. It's very exciting. I doubt I'll be able to get access to this blog from blogger.com since China blocks many popular American web tools. But I might try to email updates. We'll see what happens.

I haven't updated one last big event for Jordan this past week. I took her to the occupational therapy clinic on campus to introduce her to the students there. She's visited the class once a year since she was 10 or 11 months old. I just tell the students what it's like to have a child born with a difference and explain the various things we're doing to make sure she stays on track. And she's really on track and I expect to keep her that way!!

The coolest little moment was when Jordan was hanging out with Lea Ann who directs the clinic. They were sharing some Teddy Grahams when Jordan held out her new hand to hold the snack. Lea Ann helped turn it enough for Jordan to actually hold it. It was a really cool moment. It's the little things. The little flexible hand is helpful but so darn simple -- But since it doesn't really restrict Jordan, she really uses it. I watched her chase a friend with TWO hands earlier this week. Today she was petting our big dog with TWO hands. The hand that opens and closes still feels restrictive to her. She doesn't hold her arm as heavy or dead as she did with the previous myoelectric arm, but she isn't really using it to the fullest potential. She's only had it for a week - With a little extra OT and effort, she's going to catch on to that one as well. We have yet to try the bike hand. Maybe she'll work on that when I'm away -- But hopefully she'll wait so I can be there for the moment she has full balance and stability riding a bike!! (can you tell I'm excited for that moment?)

School picture 2008

I think they shot the picture a little wide -- notice all the space around her. But Jordan flashed a sweet smile for this year's school picture. I bought the picture CD, but they only gave me this tiny size. Oh well.

Since we got back into town early enough - Jordan and I are going to pick up her new shoe inserts. I bought new shoes for her while we were away that should make it really easy to wear the inserts and have stylish shoes. She has a thing about shoes - so I had to find shoes she'd wear AND fit her inserts. That's not an easy feat for her feet! (I'm slap happy today. Exhaustion is catching up with me)

I took Jordan to school today wearing her hook - I showed her teachers how to take the hook off and change it into the flexible hand. So Jordan's at school with her bouncy hand - we'll see how she does today! She's very proud of her arm and was showing it to all kinds of people at school this morning.

Home and happy

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.

I think we're figuring it out

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!

Interesting juggle

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!!

Taking a break

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.

A cool bouncy arm

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.

First attempt at a body powered prosthetic

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.

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:

Pumpkin patch!!

Jordan had a great time on her very first field trip with her school. She and her friends were SO excited in the process of getting there that by the time the crowd made it to the farm, they were all exhausted!

I think the main excitement was just the fact they got out and about. It was a little chilly and Jordan had to wear tights -- the first time she's worn tights in almost a year. She kept asking me to take off her socks... They were on too high. Hopefully she'll get over that since she owns a ton of tights (she doesn't know that but she does).


Jordan had occupational therapy on Thursday and Friday. Her therapist and I are pretty excited about the positive attitude Jordan has with her prosthetic these days. It doesn't do everything we want it to do... but she was using it to turn pages of a book and play with play-dough this week. That's really cool to see her "getting it." I've noticed that I've been Jordan's "hold this stuff" person. If she wants to hold more than one thing, she just hands one of those things to me. I don't think about it. Until recently. I realized I'm her extra hand... So I'm working on making sure she has little bags around the house so she can throw extra stuff in there and carry them around. Thank you Target for those little one dollar Hello Kitty canvas bags! Jordan thinks she's super cool with the bag and is starting to remember to use it. It's all about coming up with solutions!

Troy Farnsworth needs to be my friend

All of my neighbors were talking about a kid who was on The Today Show yesterday morning... He lost his arm to an alligator this past summer and he's been given the latest technology by Hanger Prosthetics. You should click here and watch.

This kid is awesome and clearly I need to get to know Hangar's Troy Farnsworth who is the director of the company's National Upper Extremity Program. I haven't found his email yet, but I clearly need to see if he'd like to work with a younger, just as positive and active patient. I'm excited to see what we can do with Scheck and Siress in Chicago next month, but it can't hurt to see if Hanger wants to play with Jordan. I think Casey Edwards is proof that working with younger prosthetic users can really help push technology forward! We worked with our local Hanger prosthetics when Jordan was much younger and we weren't able to build anything that was helpful other than go to a lot of appointments and get her worked up and upset. It would be wonderful if Hanger was looking to improve its ability to work with children and really find successful solutions. Kids deserve successful tools just like adults!

Jordan has taken to her current prosthetic really well lately. It doesn't work properly, but she wants to use it. I can't wait to see her working with a tool that works with her instead of against her!

Big developments

You may see a major trend in the photos I show here on Jordan's blog. Dance, soccer, football. Repeat. Dance, soccer, football. We've had a pretty active but consistent life in the last few weeks. Jordan has dance on Thursday and Saturdays have had the combination of Cameron's soccer games and going to football games. So my pictures of Jordan are clearly in a pattern of pink, green, black and gold.

But it looks like we're mixing things up. In November, Jordan and I are going to the Chicago area to work on her new prosthetic. We aren't going in the myoelectric direction this time. We're going to use a body powered prosthetic that will let Jordan really get some consistent function. There are some things she really wants to do: Swing a bat, ride a bike -- stuff she tries SO hard to do but her little arm is just a little too short to help with. Not long after that trip I'm going to China to conduct some training at a media group. Very exciting but overwhelming since I'm also speaking at a national journalism conference in between those two trips. Oy. Oh... Did I mention there's a major election the day before Jordan and I go to Chicago? Man I'm fried just thinking about it.

But I'm excited about the many big things in our future. I look forward to working with a new company and the possibility Jordan will be able to work with a tool that will help her really do stuff she wouldn't normally be able to do. And it won't piss her off. Her current prosthetic hasn't functioned like we wanted and it's gotten to a point where Jordan yells at it to open when she wants it to open. She also yells at it to close when the hand opens and closes for no reason. But I know she's ready for something that works. A couple of days ago we were hanging out with a bunch of adults when Jordan said she has three arms: her big arm, her little arm and her robot arm. I thought she was joking about three arms until she defined all three arms. She's right. She really does have three arms. I love it.

An amazing thing in the U.S. Senate

I'm not one to try to talk politics here on this web page... I do that during my day at work. But I did want to let anyone know who would be interested about a new bipartisan bill that was introduced in the U.S. Senate on Friday. It was introduced with the support of the Amputee Coalition of America (ACA). The bill is called the "Group Health Plan Prosthetics Parity Act of 2008" and is designed to make sure all health care plans actually make it affordable for amputees to use prosthetics. This has been one of the biggest worries I've held deep inside my heart as I think about the long term needs Jordan might have when she gets older. Right now our health care plan has been pretty helpful with payments for her prosthetics. I was really worried about what would happen once she grew out of our health care and she needed to use her own company. Hopefully this will give her access to prosthetics IF she wants to use one. Who knows. I feel a little bit better if this bill moves through.

32 Months Old!!

It's been a crazy couple of weeks as I transition into a new role at work and we snuck in a weekend trip to St. Louis. The kids got to see their uncle AND enjoy the Magic House and the Zoo. Jordan is still talking about the animals - especially the penguins.

I was looking at the calendar and this month has just flown by. In the last month, we've seen Jordan grow in some ways and regress dramatically in others. From watching Jordan's development and mood, we're using her prosthetic only with therapy. I know our original prosthetic company would disagree with this decision, but she's so unhappy using the arm. I started talking to a new pediatric prosthetic expert in Chicago and it looks like we'll probably meet up with him when he returns from the Paralympics in China. We're talking about using a body powered prosthetic for now and return to myoelectrics when she gets older and has needs that a myo can help with. He and I are talking about how we'll target the things Jordan wants to do that a prosthetic can do. Our targets right now: riding a bike and playing sports like baseball and basketball with her brother.

We've had some interesting challenges at the end of Jordan's 32nd month. She got to stay in her class for the new school year but there's one new teacher and many new classmates. It's apparently thrown Jordan for a loop. She's back to clinging to me during the morning drop off and she's forgotten how to use the bathroom. We're talking really forgotten. We're talking not just pee. We're talking about DISGUSTING. I remember Cameron having weeks where we had a bag of messy clothes every day, but we never had this gross problem. I'm not sure how to get her back on track, so we're walking around the house without underwear again and I'm trying to decide if we should return to diapers or just full commando. I'm stumped.