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.

Matter of fact

I knew Jordan was getting to the point when she would be able talk about her difference. I think Sunday was the first day I got to watch her in action. There was a little girl sitting next to her at church who looked over to her mom and said: "That girl doesn't have an arm!" I looked at her and said my traditional: "That's how she was born." Then Jordan gave her explanation:

"I got a big hand. See my hand. And I got a little arm. This is my little arm."

So matter of fact. So to the point. I loved it.

Today I took the kids to the local water spray park and Jordan turned up her independent attitude. She demanded I stay away from her as she ran between the playground and the water sprayers. If only she'd feel that independent about potty training. I have her going commando at home, but she made a mess of things during a newsroom visit earlier today. I'm leaning towards going back to Pull Ups until the messes stop. Commando at home, Pull Ups in public. The process exhausts me!!! Seriously, I was down to two Pull Ups when this problem turned up. I was about to have a personal ceremony honoring the end of landfill piles of poop.

Wah.

Here's a silly moment at the water spray park:

Strange little moment

I had a crazy day... The kind of day when you wake up you don't want to get up but if you don't everything will just get crazier. Jordan had a meeting at our house that was followed by an appointment for both dogs at the vet that was followed by a gathering where I was helping set up a computer system. I had no time to go from one place to the other let alone get Jordan to school!

So Jordan "helped" me take the dogs to the vet. I've avoided taking the dogs together for a number of years. I had no choice since we're in the middle of what I'm now fondly calling "Flea Drama 2008." I'll just say I've never had to vacuum so much and I've never combed out our fuzzy dog Dudley as much as I have during all of this. Anyway, when we first got there, a young boy (older than Cameron) jumped up and seemed to be staring at the dogs. I figured he wanted to pet them, but I was concerned about controlling the dogs and keeping him safe (you never know) so I moved past him quickly. But later as I was rescheduling ANOTHER flea check appointment, the boy walked up to me. I expected him to ask to pet the dogs. But instead he asked what happened "to that little girl's arm." He pointed at Jordan who was trying to "walk" our pug Bubba around the hallway (she was doing pretty well for a small kid and a strong 23 pound dog). The boy was obviously developmentally delayed in some way... It didn't really matter. He was just curious. He was obviously confused when I told him that's how Jordan was born. Just another of those moments when you're just going about your day and forget there's something a little different about Jordan.

By the way, Jordan has named Bubba "Bubby." She loves to walk around and pat him gently, but Bubba is a little unsure about the love. She's always so proud when she can give him attention.

Baseball and movies

Jordan had a very busy weekend. It started with a Friday night trip to the Cardinals. She had an amazing time especially when you consider the fact that she should have been in bed at the time the game started! She loved the hot dog, she loved seeing Fred Bird (she even had his picture on her t-shirt and that apparently was AWESOME), she loved being silly in our seats. It was great.

What wasn't great was the whole going home part -- we live about two hours away from Busch Stadium. The kids needed to sleep. Randy was exhausted and wanted to sleep. I wanted to sleep, but I drove instead. But the funniest part was how Jordan was so overtired that she couldn't fall asleep. Instead, she couldn't stop singing. She sang nonstop in audible and inaudible tunes. She sang about mom and dad and the cars and baseball (she calls it base-eh-ball). Jordan sang for 45 minutes nonstop. Randy was aggravated. Cameron slept through it. I just laughed quietly and tried not to interact with her so she'd wind down eventually. She did. Even better. Both kids slept until 9 in the morning! That was cool.

Today we took the family to WALL-E. The first 30 minutes or so has very limited dialogue. Jordan enjoyed it. She was dying through all of the previews... That was the best part. She kept asking "Where's WALL-E?" After the Pixar short she announced: "It's all done. WALL-E's coming!" Once the movie started, it held her attention pretty well. The popcorn helped. I swear, she would eat that food and nothing else if she could.

On the whole, a good weekend as we try to get back into the swing of things. On deck: Jordan has three occupational therapy meetings this week. She hasn't had her prosthetic on much lately, so the battle to wear it has gotten pretty rough. Right before our vacation, she had picked up a really nasty blister on the tip of her little arm. I'm hoping that was a fluke. I plan to really keep a close eye on her arm just in case.

Another cute thing, there's a picture on our refrigerator Randy took the day Jordan was born. It's been there since I printed it out when she was a week old. We put it up there so Cameron could notice Jordan's little arm. Well, now I just keep it there because it is a really sweet photo. But what's really interesting is how Jordan's looks at it. She takes it off the refrigerator, sits down and compares her arms to her baby version. She points to her little arm in the picture and then shows me her little arm. Then she points out her baby hand and shows me her hand. I just think it's interesting to see how she sees herself. It's important to me that she sees her difference and loves it, accepts it and is open about it.

A new look!

Jordan's had her hair cut one time... Until today. I wanted to help her hair take shape before we head out for a big mega-vacation. So I looked into places I could take her and the price wasn't any different between a nice grown-up hair place or the new local girly-girl salon.

I went with the girly-girl salon. She loved it. (Cameron was not that interested in being there... When we got to the door, he stopped and pronounced: "I am NOT going in there.") Jordan got her hair washed with chocolate shampoo and raspberry conditioner and seemed to enjoy the experience. She listened really well while her stylist did her hair (the barber chair was a pink Barbie Corvette). She even had her hair blow dried. SO funny.

I have to say, I kind of miss the little ragamuffin girl I had. She looks so clean cut and pretty with the new hair. I'm hoping her bangs will continue to grow and catch up with the rest of her hair. She's never had them trimmed and yet they're SO short!

Tomorrow is Jordan's last dance class of the summer. I talked to her dance teacher who says she can tell our girl loves to dance and encouraged us to keep it up in the fall. She also did a really wonderful thing: she asked how to help deal with the kids who stare at Jordan. She thought it might be too personal to ask, but I really appreciate it. I gave her tips on using Nemo's little fin as a guide to kids to help explain that Jordan can do anything! I'm so happy ABC ran Finding Nemo recently so more kids had a chance to watch it. I love that movie and of course I love it even more since Jordan arrived. I offered to talk to the kids in the class, but my feeling is I don't want to call it out. I'd rather kids learn about Jordan more organically, but if there's enough of a disruption already, I'd be happy to chat with them all. I also encouraged the teacher to see if Jordan would like to talk about her arm. I'm not sure if she's ready... Since I realized I haven't given her a chance yet. It's time to start letting go. I want to protect her and it's scary to know that she had to be able to hold her own. I realize she's only close to two and a half, but the sooner she learned, the stronger she'll be!

Cleared!

We had another meeting with the physical medicine and rehabilitation doctor that's worked with us since Jordan was three months old. I've used him as a back-up source... And extra eye on Jordan's care so we can be sure that she's developing and getting the proper care.

Today we arrived to show off her growing use of her prosthetic, her amazing muscle tone at the base of her little arm and her greatly improving skill of walking -- her shoe inserts are really helping steady and straighten her walking.

He was so pleased with her progress that we don't need to come back... Unless I find a need to meet up with him.

To me, that's a great relief. It means we are on the right track. The doctor commended me on working hard and getting Jordan everything she needs. He was impressed with her muscle tone in her back and he agreed that we need to keep working on Jordan's little arm's strength to help lift her prosthetic up high. He thought the idea of getting Jordan swimming was a good idea. Just holding onto her big arm and getting her to splash with her little arm would be strength-building.

SO hopefully I won't need to visit with him unless we need his help in getting healthcare approval for a device or any type of procedure that Jordan might need. So far, that isn't a concern. Who knows what will happen next year when we have a new healthcare plan. I'll keep my fingers crossed for that.

Quick update

I took Jordan to have her blood drawn to get us closer to finding out if she has a food allergy (or some kind of allergy). No fun. We had to have three people to make it happen. I held her body. Another woman held her arm while another woman too Jordan's blood. Miss Jordan was pretty darn upset. Amazingly, she wasn't bruised... There's just a little mark.

It was a little strange though. I opened Jordan's arm and the lab technician started poking at her arm looking for a vein... And I said: "You only have one arm to work with. Good luck!" I don't know why, but I thought that was kind of funny.

Then it made me think... How does the blood flow through Jordan's arm. How does it work? I'm dying to know what's inside her little arm. Does she have a malformed elbow? What kind of muscle structure is at the base of her arm? I would LOVE to know more.

Dang it

My girl
Originally uploaded by NerdyMom

So I had kind of hoped Jordan had a parasite so we had an answer to her health issues. No luck. Her kind doctor emailed the results to me tonight as I asked for more ideas on how to stop these ickies. Her diaper messes got worse today. It's just exhausting and stinky. I can only hope that this is because of her teeth and it will end when those final six pop through. She is 18 months. They should be here any day now! Shouldn't they?

Along with that, I think she's growing out of her prosthetic. She got it 8 months ago and it doesn't seem to fit right. Her arm looks a little folded when you take it out of it. I'm going to try and get a picture of that "fold" so the prosthetic company can see the challenge. They may be able to grind out some more space for the prosthetic so Jordan can feel more comfortable.

Along with that, I talked to Jordan's physical therapist today... And the sweet sandals that Jordan loves... aren't helping Jordan's legs. Apparently they're bowing out because Jordan still isn't walking with her feet flat. So she needs lifts... And it's hard to get a lift to work with sandals. Poor baby. So I have to get leather shoes that fit... and if we can get the state program to pay for it, we could get a plastic mold for Jordan's feet in the sandals. For now, I'm going to have to find size 5 leather shoes. I just bought her canvas, but I was told leather is the best way to truly hold her feet in place. Dang it. Nothing is easy. I know we should count our blessings. She's incredible and we're lucky to just deal with these kind of challenges. But dang it. Why can't my little girl who LOVES shoes just wear the shoes she loves? I know it's a bigger deal to me than to her. But the little things like that... It just sucks.

But she's walking. She's walking A LOT. And she has no fear. And I am so damned proud of her.

Ahhhh. The weekend.

Thank goodness it's the weekend! It's been a long one for some reason.

Miss Jordan's grandparents are here to spend some time with us. Thank goodness they were here -- I needed to get Jordan into the doctor since her gross and unexplainable diaper issues continue to wreak havoc on her bottom and clothing. I was able to get time with our doctor... But it was only 50 minutes before I needed to be at a graduate student's project dissertation. My in-laws were kind enough to wait and wait and wait to see the doctor (since I had to leave before she came into our exam room). But lucky me (and I'll try not to get graphic)... I get to scoop poop into various container so they can be sure she doesn't have a parasite. Nice, huh? Everything about Jordan is totally okay... Actually great. She's 23 pounds, 3 ounces!! I just wish we could figure out why her intestines aren't doing their job properly (and we're heading into our third week of this issue).

We did enjoy some time at another t-ball game. She also enjoyed a dinner out at one of our favorite restaurants. It doesn't have a kiddie menu, so I ordered catfish and garlic mashed potatoes. I figured I'd just share. Official discovery: She LOVES garlic mashed potatoes. She grabbed a spoon and just dug in. It was awesome.

We really enjoyed another t-ball game once Cameron calmed down (he didn't get a nap and was VERY cranky). Jordan was walking all over the place, laughing, drinking water and playing with anything and everything. I really like how the entire crowd is used to Jordan and even laughed about how she was suctioning a water bottle cap onto her little arm. You can see her playing with it in that picture. She really will play with anything with the little arm... That's when I had to take the potatoes away at dinner: She took a spoonful and started smearing it into her arm. Messy. But it must have created an amazing feeling. I can't wait to have the chance to ask her what things feel like on the base of her arm compared to her hand. That will be fascinating.

Subtle staring

When you walk by Jordan when she wears her myo, she looks a little muscular on one side -- the prosthetic is a little wider than a standard little girl's arm. Then you have to look a little closer to notice the arm is permanently bent at an almost 90-degree angle. Then you notice the hand -- it's very doll like. And since it's the summer, it's also strangely white compared to her other tan arm (I swear I use sunscreen, she just tans easily).

Now that Jordan walks most of the time, I have time to enjoy walking a bit more. I look around more to make sure there aren't any dangers for Jordan to walk into. And since Cam is attending new school for the summer, there are a lot of new faces to see and meet. So kids do double takes, adults stare just a little... Standard stuff. I just wish more people would feel comfortable to ask what's going on. It took almost half of the t-ball season for parents to feel comfortable enough to ask what happened. The funniest reaction: "I'm so glad it wasn't something like cancer!"

I guess every new stage for Jordan is a new stage for me as well. I interact with the public a little differently. I'm very comfortable talking about Jordan. I also thank children who ask what happened to her. I thank grown ups who are brave enough to ask as well. I just hate grown ups who stare. I really hate grown ups who try to get away because they don't have the nerve to ask.

I heard about a new term on a blog recently: Disablism. It's like racism, ageism, sexism. There's a growing discussion about how disabled isn't the end of the world and more people need to lighten up. My brother-in-law left this article out for me to read the last time we came to visit. Look at the lead picture. It's fantastic. Jordan's arm doesn't define who she is and I just wish the uncomfort that follows people who see her with or without her prosthetic would fade away. If I could, I'd put Jordan in her "Dude. Where's my arm?" shirt every day. It defines our attitude. Get over it folks! Look at her! She's incredible. She's beautiful. She's JUST RIGHT!!!

Battery failure

Jordan's battery on her prosthetic just flat out failed. So it should be back home by tomorrow for her using enjoyment again. She has been pretty uninterested in using the passive prosthetic. It isn't heavy and she can move it around more... But she's been pretty off balance using it.

I guess I didn't realize how she actually has come to rely on her prosthetic. It gives her a center of balance. It also gives her some substance to hold onto things. At the same time, she's really good at holding on to items with her little arm... And her chin. The chin has become a really important holding point on her body -- it helps her turn things around or temporarily hold something on its way to her little arm. It's amazing to watch. I really need to capture a bit more video of her walking and holding skills!

At the same time, Jordan is gooky. Her nose is running, she's coughing a lot. No fever and I still am pretty sure it's because she's making the many teeth she still needs to grow. Either way, all that mucus is causing a lot of really icky diaper problems. I've got her on the BRAT diet again, but I haven't seen much improvement. I might return to bland, but non-BRAT food. I can't quite decide.

A fun day at the park

We spent the day at an event called Art in the Park. We got to see cool art, eat yummy food and watch the kids play. The best part for Jordan was a huge sand area to play. She was almost swimming in it. She was a mess and I didn't care.

We had a few interesting moments while we were playing. While Cam was getting his face painted, Jordan and I chased each other around her stroller. A woman who was working with the face paint booth told me she remembered seeing Jordan at a theater event this spring and said she thought Jordan is as beautiful as ever. With any other kid I'd think they were joking about remembering a child from an event from months ago... But Miss Jordan is memorable. And honestly, it was a sweet comment about my girl.

But I had another situation with a little child that I'm a bit stumped on how to handle.. Especially since it keeps happening. A little girl who was probably around three years old walked up to Jordan from behind and started touching Jordan's arm. Jordan was tired from all of the excitement and didn't like being touched. The only thing I could say to the little girl was -- "It feels just like your arm. There's nothing different, it's just smaller." The little girl asked where Jordan's elbow was -- which I thought was kind of cute. She was more worried about the elbow than the hand. That was new. I gave her the standard "that's how she was born." Her mom said "and that makes her really special." How do I keep kids from touching Jordan's arm? How do I help Jordan react well when she is touched when she gets older enough to let kids know that she will be their friend but she doesn't want to be touched? I want Jordan to be approachable. But I don't want to her to feel violated.

Interesting experience

So I was helping edit video for a conference this past week. Yesterday I had to bring Jordan in with me for a little while. She came in while a panel discussion was underway. Every once and a while, she had to babble about how happy she was with her apple slices. I'd shush her and hand her milk to drink. It was sweet. She was so happy and smiley in her stroller. I was able to keep working. It was great.

At the end of the panel talk, I went to the front to talk to the conference attendees and Jordan could hear my voice. So I said hi to her and mentioned that my daughter was in the room. So all kinds of people had to come over and say hi. Miss Smiles was putting on quite a sweet show. People said hi and moved on.

A couple of people came back to play with her more (after they opened up the cash bar). And eventually some of them were willing to ask about her arm. I had been commenting on how awesome she was doing with her walking skills. That's when one of the guys (it was all guys, I don't know why, but that seemed strange) said that other people were whispering "she doesn't have an arm!" And he said how strange it was to see people walk away instead of ask questions. Our culture is so scared of differences. I'll be honest. I'm not sure how I would have handled meeting a baby with a missing arm 15 months ago. Probably the wrong way.

I honestly see my ability to raise Jordan as publicly as possible will not only help her feel more comfortable in this perfectionist world, but it will also help inform so many people that you don't have to look "perfect" to be wonderful.

Today Jordan had her 15 month check up. She's 21 pounds, 8 ounces. She's 30 and a half inches long. 25th percentile on weight. 50th percentile on height. She's doing just great. I'm still shocked to have the skinny baby. Cam was a monster!! Jordan had three shots this morning. It was the first time she didn't handle it well at all. Poor baby. I took the band-aids off tonight and she cried like I just gave her the shots again. It was miserable. I just cuddled and snuggled her and sang her a lullaby before she went to bed.

Big strides

Jordan's physical therapist worked with her today... And we've both come to the conclusion that we just can't get much therapy done when I'm around. I'm the comfort zone. I'm not supposed to force her to do things she doesn't want to do. So she's going to look into getting permission from my case manager to work with Jordan at school. She'd like to up the time with her and really get focused on walking. She really thinks Jordan is weeks away from the skill.

After today, I really think it's possible.

She was pulling up onto just about anything: the fridge, the stove, the door, any type of chair, my leg, statues at the local garden where we spent hours playing today.

Jordan's therapist also put new inserts into her shoes... Hopefully that is helping as well. The inserts have really helped her right foot. Without a shoe on, she holds that foot flat on the ground. It's fantastic.

The hardest part in watching Jordan finally gain better skills in cruising along furniture and pulling up to stand at things is watching when she fails. Without that second hand, her leverage is tenuous at best... And that little arm can be very slippery. I watched her crash to the floor a lot today. And I can't gasp in horror or cry out, or else she will lose it and give up trying. But I just want to pick her up each time and do it for her. But she has to learn. It's really hard. But it thrills me to watch her have this problem. She really wants to stand up more. When I put her down, she holds her body into a standing position for a little time, or she chooses to stand at my legs. All of these little developments are a really big deal.

I took Jordan to the nearby fountain and garden this afternoon with her brother -- she stood along all kinds of things -- even tried to climb into the planter that is around the fountain. She almost did it, then sat down and clapped for herself. Plain cute.

The one thing I regret was not taking a camera along for the fun. I gave her a grocery-store boxed ice cream cone and it turned into a very big mess. I have yet to clean up the sticky stroller.

Another rash

A day "airing out" Jordan's little arm didn't really help get rid of her heat rash. So I put some cream on it before bed time and I hope it helps. I've been obsessively cleaning the prosthetic, so I know that's not the reason behind her rash this time around.

The day ended with Jordan seeming more like herself. I can't see any teeth poking, but I may not be looking in the right place. I do know that she's madly in love with her brother and the dogs... They make her giggle the most. And honestly, she could sit outside all day and giggle manically and say "dog" again and again and again. I have to get video of the laugh. She has two kinds: hysterical laughter (from tickles and outright silliness) or mischievous laugher (from seeing things she likes or doing something she's proud of).

Oh and one other thing. Without her prosthetic, my girl climbed up 5 stairs all by herself. It's cool and scary all at the same time.

Words, words and more words

Jordan's words came spilling out this past weekend. Now she's trying very hard to copy things I say and she's saying things more and more. Yesterday she said hi to a teacher and actually said something that sounded like her name... And as I commented on her flowers, Jordan said: Flawwww.

Here's a cute moment of Jordan over the weekend:


If you can't see it, go here.

At the same time, something is going on with her -- She's been crying in her sleep. She had a long crying spell at school (which is TOTALLY strange). I think she's cutting teeth, but she just seems to be acting a little odd. And another challenge: things are getting hot here for the first time and Jordan's arm sprouted a heat rash yesterday after wearing her prosthetic. I feel terrible for her. Not to mention, if this was the very first warm day, what is she going to do when it's hot every day? It's a bummer.