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

3.31.2008

Mud? I don't care about mud!

It's been a very wet spring so far. There's been a lot of flooding in our state. For us, our backyard just won't dry out. So when it rains, the backyard turns to mush immediately. But that doesn't mean a thing to Jordan. Today's temperature was in the low 70's and that was just too warm to keep Jordan inside.

So...

She decided to play in the puddles:



If you can't see that, click here to view it in a pretty nice video player.

I swear, every day she does another thing that makes me fall over and giggle. By the way, to my new BabyCenter friends, sorry I haven't been able to play in the new community - my login is having problems and I can't get back in!

3.29.2008

27 Months Old!

27 months old. It's pretty amazing. There's so much amazing happening these days. We're having full conversations. Jordan is trying as hard as she can to butt heads with me, but I'm trying to stand tall. Her talking took up another notch this month... She not only states fact and asks/demands things, she's holding her own in conversations. For some reason, I think it's stinking cute.

Her walking and stair use improved a lot this month as well. She's really holding her own. It's incredible.

What's most incredible is just how she's a little person. She bates her brother. Her brother bates her. It's difficult to listen through the noise and yelling, but it's an amazing process to watch. When the kids get along, it's pretty great. They ACTUALLY have conversations. They're short, but great.

Other awesome things Jordan is doing: Singing and singing and singing. Her favorite songs can pop up at any moment. She'll sometimes sing with the piano. Often I'll find her singing to a doll or an animal when she's playing alone. Lately, I've also found her showing stuffed animals and dolls how to go potty. She isn't doing it yet, but there are many very knowledgable dolls in our household.

This is a amazing age and I'm so proud of everything she can do. I look forward to finding ways to help her prosthetic function better and looking for ways to help get her ankle structure proper. Seriously, I want to get this girl into sandals!! Those ankles have to get fixed before I have my shoe wish!

3.27.2008

Group pride

I'm a co-moderator for a support group that's been known as the ABS Support Group for a long time. ABS stands for Amniotic Band Syndrome -- a diagnosis many kids get when they're born missing pieces of limbs. It's what my doctor said immediately. I'm now very skeptical with that diagnosis... And I lean more towards a vascular incident that restricted Jordan's blood flow just at the moment that it affected her arm. Anyway, this week we announced that ABS Support is now called Sammy's Friends in honor of the founder of the group's daughter.

Anyway, this has been one of the online groups where I've found a lot of support. I tend to talk a bunch with the parents on the group and in the last few months, I've become a moderator on there with six other moms. During that time, we've just gone through a big brainstorming process to name the group differently so we can produce business cards and other stuff so more parents can learn about our group and find that there are a lot of adults, parents and kids who can offer support, advice and friendship.

So, one of the moderators put together this really cute logo and we're close to putting together a cool business card. I can share it at doctors offices and prosthetic groups around my area so I can reach out to more kids and parents in town. I'm pretty excited.

GROSS

SO... We're still doing diapers these days. I'm glad because right now, Jordan has the icky intestines. The upside of getting closer to potty training? She tells me when things are getting bad in that diaper of hers:

"Uh oh Mommy. I poopie."

(Oh. Gross.) Thanks honey, let's go change that.

YUCK.

3.26.2008

That pink thing

When I was pregnant with Jordan, I was ADAMANT that I keep my little baby daughter away from the color pink. I hated the color. I didn't want to force my child into some kind of gender assigned color coordination. It was wrong. My child was going to wear green and yellow and heck, BLUE but you were not going to put her in pink.

Until she was born.

Oh my. When she was born, some of her clothes didn't fit right because of her little arm. Her little arm would pop out of those stretchy necklines... And I worried about her getting cold. So we bought outfits with zippers up to the neck instead. My mom bought pink... And I suddenly melted. My little girl looked so DANG cute in pink.

Now when I go through her pictures, there are very few without pink. Every time I take her into work, my news director makes fun of me. It's true. Jordan has so much pink. I completely folded. I relented. I accepted a little piece of girliness when Jordan was born. Now I'm pretty accepting. I still wouldn't wear pink all the time for myself. But Miss Jordan looks good.

By the way, Jordan got to return to school today. Her brother isn't AS sick as yesterday, but I'm staying home with him today to make sure he gets better.

3.25.2008

We interrupt this regularly scheduled day

Just when we had the day rolling, Jordan and I suddenly spent the day at home while her brother sleeps. He wasn't feeling well... Bad enough that I decided to not drag him into the car just so I could take Jordan to school. So we've let him sleep and she's let me take conference calls and do some work. Unfortunately, this means Jordan missed her second occupational therapy appointment today. Hopefully we'll be able to reschedule for later in the week.

So what has Jordan done today? Well... She's played cards, played with blocks... And I've let her watch TV. I know. I know. I try so hard to not spend that much time with TV... But I've let the rules relax since the day isn't going as planned.

Jordan is enjoying a snack and learning about animals with Zaboomafoo right now. We might find a show that talks about colors -- we need to work on that.

3.23.2008

A happy Easter

Jordan enjoyed her third Easter... And she was able to participate in it more than ever before. She put up with my attempts to pose the kids for Easter in their pretty outfits. She put up with my need to put them through an egg hunt. She enjoyed eating a bunch of sugar -- Although she would only take little bites and throw out the rest. She's been eating strangely lately. She loved talking about the Easter bunny and she LOVED challenging her brother over what is hers and what is his. She's getting very possessive. Of course that bugs the heck out of her brother.

Other than that, Jordan made sure she talked as loudly as possible during the prayers at church but happily went to children's choir with her brother. It stuns me how she has grown up since she turned two.

3.22.2008

Jordan Approved

Jordan loved it. We all loved it. It's funny and Jordan loved the action and the sillies. She spent half of the time saying: "That's funny Mommy! That's funny Daddy!" and the other half eating popcorn and drinking water.

I swear, if she could, she'd eat nothing but popcorn. Obviously she's my kid.

3.21.2008

Thanks blog friends!

I have to say I'm pretty amazed by the immediate response of my blog and web friends when I announced our latest prosthetic arm problems.

I live closest to a Shriner's in St. Louis - that Shriner's does not produce myoelectric arms. So, hopefully my physical therapist will target a Shriners that would be interested in working with us... Or another shop that wants to help. Of course I'll check in with our current prosthetists and see what they have to say. My PT doesn't think it's appropriate to wait until the Fall to get a better functioning arm.

The more advice I can get, the merrier. I'll take more ideas from my blog and web friends. Talk to your prosthetists... Talk to the experts you know. Share the word. Jordan is an unusual case. She doesn't have an elbow - but the base of her arm can bend SLIGHTLY into the direction an elbow would bend. She bends it in that direction when she wants to grab something. So clearly it would be logical to try to harness a sensor in that location. So far, our prosthetists haven't been able to do that. It would be AMAZING to find a way to accomplish that feat. And the fact that Jordan already "gets" the concept of having a hand open and close means if we could get a tool that really works, we could have a tool that can actually help her when she needs it.

Once again, my girl can do just about anything with a prosthetic... But if there's better technology, let's try it on Jordan! Come on! Who wants to play?

3.20.2008

Another busy week

It's amazing how swamped I am at work this week. Today Jordan got to meet with her physical therapist for the first time in many many months. I was kind of hoping we'd get the all clear from wearing those shoe inserts and move towards letting Jordan wear cute sandals and other shoes like that.

Oh well.

Jordan wears her shoes with inserts almost all of the time. I don't just watch her walk without those inserts. So today, we took a look. We had her walk around without shoes and socks and you can really see what's going on. The good news: Jordan's knees aren't knocking inward anymore. But her ankles are still strangely pointing in and her feet are SUPER flat. The new recommendation is to get Jordan to walk around without shoes on more often. That may not be as easy as it sounds. Not long after she started wearing bare feet, she started looking for her shoes to put them back on. Apparently walking without her inserts make her feel a little off.

Our therapist also took a look at the prosthetic we're using. It's a myoelectric arm and it just hasn't worked exactly as we wanted. The hand doesn't open and close when we want it to -- and after playing around with it today, the trigger on the sensor is actually inconsistent. It was fully charged! And what stinks is Jordan has been looking at the hand lately and ASKING it to open. That means she totally gets what it's supposed to do! Grrrrr. The one positive about the arm is Jordan's range of motion is finally expanding. She's able to lift her arm up so much higher than before. So we're gaining muscle and to me, that's very important. But because Jordan is clearly ready to work on the hand function, but we can't seem to get that to work properly, our therapist is going to look for other possible options. I'm willing to travel anywhere if we can find a solution.

Jordan's going to be fine with our without a prosthetic. I'm certain of that. But I'm totally open to find an even better option... If there is one.

3.16.2008

Every day I am amazed

Miss Independence continues to wow me. She knows what she wants and she's all about ordering me and anyone else around. This weekend she was pretty close to me after I missed most of Saturday due to a work meeting. Today was a perfect example about how Jordan is growing.

While her brother was playing at a friend's house, she and I spent some time outside. It wasn't warm, but you can feel Spring trying SO hard to emerge. I sat down when Jordan walked up and said: "Hold my hand." Then she pulled me all around the backyard. She wanted me to play in the house tent, she wanted me to watch her run... Whatever it was, she made sure I knew it.

A tricky side of this independence thing is the lack of sidewalks in our neighborhood. Jordan doesn't want to hold my hand so we've compromised. She knows she MUST stay on the curb or else she MUST hold my hand. But that hand holding must be instigated by her or she puts up a fuss. It's SO two-year-old. Oh and when she requires me to hold her hand, I MUST hold her hand with my left hand. She will not allow me to cross over and hold her hand with my right hand. She'll say: "No. This hand." So particular.

I know I keep writing about it, but the way Jordan has taken to the stairs is still awesome to me. She's also starting to really put together the ABC's song, Wheels on the Bus, Twinkle Twinkle and of course, Elmo's Song. Every time I try to get video of her singing, she stops. I have to figure out a sneaky way to catch it.

3.12.2008

Swimming lesson update

I think I should convince some stranger to take pictures of Jordan and I at the pool just so I can share a picture.

Lately, the only picture you'd get is her screaming: "NO KICK! NO JUMP! NO WATER!" She loves the swim class for the first 15 minutes and then her mood changes. It usually changes after she gets her head fully wet. I'm pretty sure it's a control thing. She wants to be in control at all times and when she's underwater, she feels out of control. Obviously, that's not a good thing in her world. Other than personality struggles in the water, she is getting stronger at kicking and getting more natural at reaching her arms out in the water.

The best part of swim class today: It was the first night when we left the building without freezing to death. Hopefully Spring is actually here. I've been getting pretty annoyed with this long, cold winter.

3.11.2008

We won some cool stuff

I didn't want to jinx myself, but that video that I posted earlier won us a really cool contest. I submitted it a while back and today was the official reveal.

We won a couple of iPod Nanos, a couple of watches and some t-shirts. Pretty cool!

I'm oddly sick - Dealing with a fever and a bad stomach. Hopefully it won't last long.

3.10.2008

Stubborn. Just plain stubborn.

I've watched Jordan move more and more into a very stubborn mode. It's standard with a two-year-old. The funny thing is it doesn't make me mad most of the time. It makes me proud.

That stubborn attitude finally has her WALKING UP AND DOWN THE STAIRS BY HERSELF! I know that doesn't sound like a big deal, but it has not been a skill she could do on big, traditional stairs. She doesn't have to have a railing. She's just holding onto the wall if she has to.

Makes a mommy pretty darn proud.

Then there was swim lessons tonight. Oy. Half of the time she would say: "No kicks! No pull! No swim!" She did kind of jump in the pool twice with my guidance - from the edge of the pool, deep down under the water and back up. She came up both times spitting water and feeling excited and scared and a bit clingy all at the same time. She did give high fives to her teacher so I guess that means she felt like those jumps were an accomplishment. It was great hearing her teacher talk about how it was cool to see how Jordan can do anything any other kid can do. Yup. She sure can.

3.07.2008

Whirlwind trip

I just got back from a whirlwind trip where I had a chance to meet with a bunch of companies in California. I had hoped to meet up with BethGo, but the schedule was packed. I barely slept. I did eat well (Cliff House, Brickhouse Cafe, Circolo) and I am feeling very inspired when it comes to my job.

I got home without getting to see Miss Jordan before she went to bed. But she did make sure she hogged the phone when I called in this evening. She can talk and talk and talk but when she has a phone in her hand, all she says is: "Hi Moma! Hi Moma! Hi Moma! Hi Moma!" I think she's just trying to hog the line so no one else can talk.

3.02.2008

3.01.2008

Finally! A beautiful day!

It was warm today! It was so warm that we didn't even need a jacket! It was so warm that I just want to write sentences with exclamation points!

No seriously, we went on a hike on a local trail and walked to a nifty playground near a little lake. You could feel a sigh of relief everywhere you went. This has been an unpleasant winter.

Jordan was super happy to ride in the hiking backpack. Anytime you say the word "hike," Miss Jordan gets super excited.

We even got to grill outside for dinner. That meant the kids got to just ramble around in the backyard, squish in the smooshy wet parts and enjoy chalk, baseballs, basketballs and even the wagon. It was simply a happy thing.

Jordan got so dirty that she had mud on her face down to her toes. (Yeah, she took her shoes off because she didn't like having mud on her shoes.) The big moment of the day: Her yearlong strike on riding swings ended today! She asked to get on her swing and just giggled as I pushed her. I'm SO glad she's willing to ride again! (There I go with exclamation points again)