Santa!!

I took Jordan and Cameron to see Santa - I go early because I put together a family calendar every year and this is the last needed photo for the project. Anyway... This is the first time Jordan hasn't cried with the jolly guy. She seemed a little skeptical about her safety at first... but warmed up to him. The funniest moment: When Cameron reminded Jordan not to cry. This has actually been kind of a big deal for the whole last year. I keep the yearly Santa picture on the refrigerator... So often Jordan would look at the picture and says: "It's Santa!! Jordan is sad. I not cry with Santa again!" So... She did a great job.

35 Months Old!

Can you believe Jordan is only a month away from turning 3? It's mind boggling. In the last month she has turned even more into a strong, opinionated and highly verbal little girl. She is super proud of her new prosthetic. She didn't wear it much this week after we discovered a skin breakout that is healing very well (we'll start using cotton balls at the bottom of the gel sleeve). She had to bring the arm to visitors this week to show if off. While I was away this month, she talked all about what she was doing at school, dance and with her grandparents. We video chatted almost every day. That was really cool. Earlier this month we spent so much time together building her new arm. We're so happy with what she is able to use - three different hands! How cool is that?

With growing up comes big challenges. She and her brother are all about fighting for dominance. There's tattling and complaining. But that just comes with the territory. Other challenges: We're officially in the food fight zone. She doesn't want to eat anything except snacks. It will take a while to get past that. She's also turned up a notch on fighting to go to bed... I actually had to threaten the wrath of Santa last night. (If you actually go to bed, I'll tell Santa you're good. If you keep screaming and crying, I'll tell Santa that you aren't a good girl. Ack.)

Jordan's love for dance continues. She'll start dancing just about anywhere. She loves to sing and she tries really hard to know the words to songs. The down side to leaving her current preschool means she isn't performing in the Nutcracker this year. But she does have a winter recital with her dance school. Thank goodness for that!

This coming month means some big things for Jordan: A new school, a big trip to Florida and possibly a two-day trip to one of the happiest places on earth! (We're hoping Santa says we can go to Disney World... I guess we'll have to wait and see! ;-) )

Family time!

Jordan is enjoying family time for Thanksgiving... Another year for us all to be very thankful. For one thing, we are lucky to be loved by a wonderful family. We may not all live that close to each other, but we've found so many ways to stay in touch. The kids' blogs are a great way for everyone to know we're doing okay. But each and every family member goes out of their way to find ways for us to see each other in person. Holidays and non-holidays - we've all found excuses to get together and spend time playing with the kids. Randy and I are blessed to have a wonderful work environment. My fellowship has also allowed me to get to know new friends and colleagues. Then there's this growing online world that has offered us so much support and information. I appreciate the comments, emails and connections I've been able to make on this blog, Sammy's Friends, Facebook and Twitter.

We're very lucky and thankful to be so blessed.

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.

5 Minutes for Special Needs

I almost forgot... I was traveling yesterday and didn't get to post this. Jordan's blog was featured on the 5 Minutes for Special Needs website yesterday. One of the writers interviewed me. You can see it here.

But since she couldn't post the full interview, here it is:
Tell me a little about yourself and your family.
I'm 34 and the mom of two kids: a six and a half year old son named Cameron and a daughter, Jordan, who is almost three (12/29/05)! I'm married to my college sweetheart and we are both newsroom managers in Missouri. We also have two dogs that keep our lives even crazier. I work on the tech side of a newsroom and that helped me get really involved in online support groups and build a voice in my blog about my kids. I started blogging when my son was three and a half. I ran a little picture-based website about him for my family ( they live in all kinds of locations - but not nearby ) He was getting to an age where pictures weren't enough, so I looked to blog about him so I could write about the funny things he said. When I was pregnant with Jordan, I started a blog a couple of weeks into the pregnancy... Little did I know it would become a little place to help me grow into a parent of a child with a difference!

Tell me more about child’s disabilities.
Jordan was born missing her left arm just above the elbow... If you look at her you'll probably think she has an elbow - she appears to have tendons that would be connected to an elbow IF she had one. I had no idea about her difference until after she was born. I was actually the first person to notice. It was a special moment with my husband - we looked at each other and were immediately at peace. We knew she'd be okay. The biggest concern I had at first was worrying about how the rest of our family would react. There was a level of disbelief. One family member talked as if a prosthetic could help "hide" the "problem." I quickly made sure the family understood that I didn't consider a tool to be the answer. The best answer would be helping Jordan learn how to be self-sufficient on her own. That was our goal from the start. I certainly have had ups and downs. I mourned the loss of that vision of a two-handed child. I mourned for the loss of our ability to be anonymous. (Hanging out with a one-armed kid makes me very recognizeable) I mourned for my child's challenges -- but as she grew and met her milestones (some in some very non-traditional ways), the more I realized her changes weren't that big a deal to Jordan. She doesn't know differently! This is how she was made and she's figuring it all out.

How did you go about making the decision to blog about them? What do you personally get out of blogging about them and their issues?
I fell into blogging about Jordan because I was already blogging about her before she was born. At first I found it therapeutic to just write about being a new mommy with a cute little baby and the various therapy things we were working on (along with her missing arm, Jordan was born with really unusual low tone issues in her neck and torso - we have no idea if the arm had something to do with it). My challenges with work, feeding and driving all over the universe with appointments were overwhelming. As I went on, the site helped me reach out to other parents of limb different kids and I realized I had a chance to use my blog as an outlet and a touchpoint for other parents in a similar situation. I crave a community. I spent a lot of time connecting with other moms and dads with the help of my blog. I also now help moderate a group called Sammy's Friends (http://www.sammysfriends.org).

What is a typical day like for you and your family?
Life is pretty usual for us. Along with getting ready many days we have to remember Jordan's arm for days when her occupational therapist meets her at school. (We're about to age out of our state 0-3 program and we'll have to go back to driving back and forth to appointments. I'm not looking forward to that) Jordan is still pretty little so I have to help her get ready for school - bathroom and dressing skills are still in progress. A missing arm doesn't really change the day to day on most days. There are times when we have to battle between if Jordan will or will not wear her prosthetic - and these days I've decided to just not fight. I don't want a tool that is supposed to be helpful become something she hates. So she wears it on days she asks for it and she wears it when she is working with her therapist. (We're about to get her a new one and our thoughts may chance while she learns to use it) There are days when I forget her arm and have to race home to bring it to school. We do have to fight wearing shoe inserts to help correct her ankle structure -- her legs and ankles started bowing inward because that's how her brain told her to stand to maintain balance. Her knees straightened but we're still battling the ankles. Jordan doesn't appreciate how those inserts prevent her from wearing many other the shoes she likes. (She's a shoe girl)

How have your child’s/children’s disabilities affected you as a person and as a mother?
What did you do right? What do you wish you had done differently?
I am a totally different person. I kind of feel like I lived an anonymous life and we were placed into a new world. We were chosen to help lead Jordan and our community. When Jordan was little I had a hard time with the stares. I wasn't used to it. I didn't know if I should walk up to the adults and tell them what happened to Jordan. I felt I needed to explain her difference before anyone asked. When I allowed myself to let go of that concern and just live our life, I felt free, like a burden had been lifted from me. I wish I had let go of that sooner.

I am much more understanding to other people with disabilities. I'm also very proud of my family. We don't hide and we do whatever any other family does in our community. Often we end up talking to a person who wants to know about Jordan -- and we explain this is how she was born. Lately Jordan has started talking for herself - simply explaining that she has one big arm and one little arm. It's very sweet. I am trying very hard to not get angry when it comes to talking to uneducated people. I appreciate up front questions. I don't appreciate staring, whispering and pointing.

I am Jordan's biggest fan and I spend a lot of time making sure she's getting the care that she needs - it requires extra time and energy that I never realized I have. I have fought insurance. I have fought the state when they wouldn't let her into its program for kids 0-3. I have that mommy bear mentality when it comes to making sure Jordan can grow and do anything. I wish I had known what kind of support was available to her sooner - I wish I had started looking for PT and OT earlier when she was first born. It isn't that easy to find a good pediatrict PT and OT who have had experience with congenital amputees. (At least in my neck of the woods)

What do you want other parents fighting the same fight to know?
A limb difference is nowhere close to the end of the world. Our kids can do anything and it's amazing what Jordan can do. It's so important to reach out to other parents so we can support each other and our kids will have friends who understand. It's awesome to be able to compare and contrast notes on how we're helping our kids grow and live a wonderful life.

Is there anything else you would like to share?
I would love to continue to build a bigger community with parents of kids with limb differences. I welcome blog visitors (http://bornjustright.blogspot.com) or new members to Sammy's Friends (http://www.sammysfriends.org)!

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!

While I was in China...

The first night I slept in Shanghai I left my phone on... Silly me since there's a 14 hour difference. I happened to notice my phone buzzing and decided to answer it. The person on the phone was from a preschool where Jordan was on the waiting list. Apparently there's a chance for her to attend, but we needed to decide within 24 hours.

But I was in China!! So I needed to contact Randy, chat with him and see if he could set up a school visit. He ended up going to visit the school yesterday with Jordan. He liked it a lot and Jordan warmed up to it near the end of their visit. Randy paid the deposit and we have her moving to the new school in two and a half weeks! Wow. That was fast. So I'm mentally grappling with the idea of Jordan attending a new school. I'm excited but also a little sad to leave a school where we've spent so much time. Cameron started there when he was 17 months old! It's been 5 years! Wow. I'm certain Jordan will be fine. I will miss the teachers and some of the kids... even a few parents!

It's big news for us. The move also means Jordan won't perform in her current school's performance of The Nutcracker. I'm a little bummed about that... But it isn't the end of the world. She does have a Winter recital at her other dance school. I'll get cute photos/video of that instead!

I am wrapping up my second full day in China. I've had a chance to video chat with the kids three times - I'm hoping to stay awake long enough for a fourth. I do get tired earlier in this time zone. I'm documenting the trip in photos... Feel free to follow this slideshow if you'd like to see it all. I've done some touristy stuff and today I experienced shopping and debating over the price of some cool things (I even got a "Prada").

I'm here... They're there

I'm in China and feeling like I've gotten my body adjusted to the 14 hour time difference in Shanghai. All it took was not sleeping for one night and sleeping a lot on my 14 hour flight from Chicago to Shanghai. Nutty stuff.

I'm happy to report I'm here and we were able to figure out how to get Skype's video chat function to work... So I got to see the kids before they went to bed. That was so awesome. The kids were giddy to see me and I have to admit, I was giddy seeing them.

I hope to have some pictures and possibly video later after we play tourist in an hour or two.

I'll leave with this silly screen capture of the kids:

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: