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.


Scooting around

Jordan is trying with all her might to move around. So far, what works best for her is slightly moving or scooting on her butt. A teacher told me that Jordan was sitting nearby playing on the play mat. When the teacher looked away, suddenly Jordan was right next to her. Jordan is just scooting slowly around. If that's how she gets around, that's great. But I'm really hoping we can convince her to crawl... But whatever works for her will make me happy. Just watching her want to move around warms my heart. Once again... Another milestone she's going to figure out in some way.


A new prosthetic

Wow. Jordan moved her arm with a prosthetic today... She didn't just move it, she waved her "arm" and she even grabbed a toy with her hand from the prosthetic hand. We finally have a chance to work with what the therapists call her "midline." That's the center of her body... Patty cake is a good example. This new prosthetic works with a suction "gel" that rolls on her arm. There's velcro at the bottom of the gel that threads through the prosthetic and velros onto the side. It holds on with the gel's suction. No straps = Freedom for Jordan's arm.

The coolest part was when I put the prosthetic on Jordan, she was sitting on my lap. Basically she didn't mind the arm, but she wasn't doing much. So then I put her on the table to sit. She immediately noticed the prosthetic and started chewing on it (notice the picture). The upper arm is oversized -- She kind of looks a bit muscular. I'm not quite sure how she can use it with clothes when the temperatures get cooler. But tomorrow, I'm going to try to put her in the car seat wearing it on her way to school. That's actually possible with this new tool. I'm excited. It's a little bit of progress.


8 Months Old!

Can you believe how Jordan is already 8 months old? I'm shocked and amazed by how quickly this year is going by. I'm also amazed by how Jordan is growing her opinions and ideas of what she should be doing. It must be so hard for her since she can't quite move around the way she wants. She reaches and is trying to trust her body. We tried as hard as possible to get Jordan some therapy time with her physical therapist today, but we just couldn't find a good time to make it happen. We'll try again on Saturday morning. We're so lucky she's willing to work with Jordan's schedule so we can really accomplish something. From the way things are going... Jordan has all of the skills she needs to crawl. The trick is showing her how to do it. She's going to end up scooting on her bottom to get around unless we show her the crawling option. According to our PT, that's not the end of the world, but crawling will help her get better at the skill of pulling up. And of course, that's the next step towards walking. I know I say this often. But it really stuns me how simple physical milestones rely on natural skills of every little piece of the body. Take a piece of that body away and the brain has to figure things out differently. That different thought process makes it harder without a little guidance. I swear the last few PT sessions have made amazing changes in Jordan. All she needs are some tips. She's a smart little girl. She's figuring it all out.

I tried to capture pictures Jordan on her 8th month birthday at school today. I didn't have enough time this morning to make it happen at home. She was so tired, but I grabbed a couple of shots that really show my girl.

Tomorrow morning, we're meeting with the prosthetic company to see their newly reworked prosthetic for Jordan. I'm hoping we'll have something that works better. It's been more than 3 weeks since she really fit well into something. Keep your fingers crossed.


Insurance challenge #1

Let the health insurance battles begin. I got my first letter telling me the insurance company won't pay a dime on Jordan's first prosthetic. More than $4,000 worth. I'm ready to do battle. But really, what a bummer. This prosthetic hasn't done much to help Jordan and I'm going to have to fight to get the insurance company to pay for it. And to think I'm going to convince this company to pay for a $20,000 myoelectric prosthetic.

What fun.

On a nice side... I took Jordan to work today and she was so funny. She's obsessed with chewing on paper these days. Any time we were kind of close to paper, she reached for it. When we walked by a printer printing out scripts... She was in LOVE with that machine. It was classic. The new thing with her -- If she gets any grasp of a piece of paper, you have to let her rip the crap out of it. If you take it out of her hand, she gets really upset. It's funny. Paper is the first thing she's willing to fight for.

I'm willing to fight for anything for her. Tomorrow will be round one in the insurance department. Wish me luck.


Putting up with a lot

Jordan had a really successful PT session today. We're trying to teach her to use her legs like legs that can leverage and help her move around. So far, she's kind of treated her legs like extra hands and arms. So I learned some ways to recognize moments where she can use her legs better. It's tricky, but I'm starting to learn how to read her signs about how she wants to move. Most of her challenge right now is she knows where she wants to go, but she doesn't know how.

I took her to a party last night and tonight. She was pretty done with an unusual bedtime schedule today. Last night she was a trooper... Even fell asleep on the floor in a quiet room. Tonight, she wouldn't leave my arms and REALLY wanted to go to bed. So she did. Hopefully she's sleep a long time and try to catch up on the lost sleep.


So she must really like that blanket

This morning I had an important meeting, so Randy took Jordan to school. After my meeting I figured I'd go back to school and feed the baby and spend some time with her. When I got there, Jordan was cranky and obviously exhausted. What was the problem?

There were a couple of reasons. First, she usually takes her morning nap at home. She didn't nap at all that morning. Second... And probably the major reason: Her blanket was left at home. Her teachers knew she was tired. They did everything they could to help her fall asleep. They even started grabbing other baby blankets (you know the ones that the babies never use, but the blankets sit in their beds... discarded and ignored). Jordan would give the blankets a try... Then cry and throw them away. Yup. She loves her pink lambie blanket.

So I went home to get it. I needed to go back home anyway. So when I got back with the blanket, I fed her a little more, let her cuddle up with her blanket on my shoulder. Then she fell asleep. She even took a really long nap for the first time in a long time later in the afternoon. Very cool.

It was a long day. I don't feel like Mommy or Daddy got to spend enough time with the kids. I can't wait for the weekend. By the way. Jordan turned 34 weeks old today!


"An Angel"

I spent a really nice day with Jordan today. We had a sweet morning together. I took her to school and came by early afternoon to feed her on my way to campus. When I got there, one of the teachers said Jordan had been an angel today. That made me smile.

So I came back a couple of hours later and took her to work. We ended up there way past her bedtime and she didn't freak out. She actually curled up on my shoulder to rest. Cam waas there too and had a blast with all of the reporters and producers.

By the way. Jordan isn't just waving hi or bye with her hand, she's using her little arm. It is so dang sweet.


Sweet times with my girl

Look at that amazing baby!
Originally uploaded by Jen Reeves.
So we had a quick trip to St. Louis yesterday and we had a chance to take her to the Magic House. It was SO cool. It's really a place for toddlers and older, but there's a baby room that Jordan really liked. There was a little ball pit for her to enjoy and she loved the mirror. There's one at school for her to enjoy, but I don't usually get to watch her play with it. We have to go back there soon. It was just too great. We did meet a little baby who was born two days before Jordan. It was kind of interesting to analyze her abilities. The only major difference is how they sit. Jordan is very upright and rigid with the way she sits. This little girl was on the move. She had just started crawling and when she sat, she would just bend in every direction. That's exactly why Jordan's therapists are working on her sitting skills. The best part of that meeting: There were three moms of babies including Jordan and I. At one point, one of the moms commented on how her baby grabs her face when she nurses her. I had to say how Jordan grabs my face with her hand on one side, and she grabs my face with her foot on the other side. For real! She has skilled toes.

Jordan also got to go to a school picnic today. She smiled and cooed and talked to a bunch of people. What was really cool was how happy she was to see one of her teachers. She actually hugged her face with her little arm. Happy stuff.

I'm pretty sure something's going on with Jordan's teeth. She's just acting a little off. Her nose is extra drippy. She's cranky a little faster. (And she is rarely cranky) She missed a nap for the school picnic tonight, so hopefully she'll still sleep though the night. Both kids woke up at 7:40 this morning. A rare late Saturday morning wake up.

Oh, one other thing. The kids played together again today. She has this toy that I dubbed "baby crack" when she was little. It is one of those toys you can play with laying down... and now it can be played with sitting up. You hit the toy and it lights up and talks and plays music. Cam was showing Jordan how to play and he was cheering her on when she hit the toy. It's just the beginning of their friendship.


Rolling around

You know, I was talking to my friend Heather about rolling and I realize I never updated anyone on Jordan's rolling skills. She gets it now. She is so good at it, the first thing she does when I put her down for a nap is roll onto her belly.

I think she's kind of using the rolling thing as a means of transportation. Anytime she wants to go a short distance, she rolls. Anytime she wants to go any further... You know, I'm not sure if she's really ever felt the need to go any further. Nomatter how I try to encourage her, she just doesn't have the need to go, go, go like her brother had. She's a bit more laid back.

I'm not complaining. But it is harder to try and figure out a crawling system (or scooting) if she doesn't really feel the desire to move. It will happen. Just not yet.


Some work to do

Jordan and I just wrapped up another PT appointment and I discovered an interesting thing she's started doing. Instead of leaning to reach for a toy, she bends all the way to the front, throws her legs back and ends up on her belly. That way she can reach for toys. She maintains her center balance and doesn't risk the side stuff. So she isn't rotating her trunk. Very interesting. So we have some simple exercises to work on. In this picture, Jordan threw her legs back and ended up on her stomach almost right after I took it. Other signs that she's been a bit unwilling to turn her body: her legs are very wide open when she sits. When our therapist put her legs closer together, Jordan was immediately uncomfortable. Also, Jordan sits with her toes tense, like she's always on guard for a balance challange. Once again, it's amazing the little challenges she faces because of a missing arm.

Another interesting development, I spoke with another prosthetic company that I'm considering working with. They may be able to offer another solution to Jordan's prosthetic needs. It will require a bit of travel, but I don't think that will be too difficult to do.


Posing for Mommy

So Jordan is starting to settle into a sleep pattern when she's at home. When she first wakes up, she eats and then goes back to sleep. She takes a nap for one or two hours (today she slept for 3) then gets a chance to eat again. This morning after her first nap, I plopped her outside and made her pose in a new and very sweet dress she got from Nandini. It's awesome and Jordan looks wonderful in it.

I'm a little overhwelmed with Jordan's obssession with me. I can't really go very far without her wanting me in her sight. Most of the time she's okay as long as she can see me, but when she gets tired, she wants me holding her and that's tough when I need to do things like clean and cook... Or feed the dogs... Or go to the bathroom. She has a little squeal that she uses when she's unhappy with me or can't reach a toy. All normal stuff.

This afternoon, Cam and Jordan were playing together... Well, at least I tried to get the two of them to play together. Cam kept stealing Jordan's toy: A little drum that she's figuring out how to use. Apparently, Cam thinks it's a cool toy for the first time in about two years. We're going to have this "playing together" challenge for many years to come. Cam's excuse? "I'm showing her how to play with it." Sure.


Teeth? Are they coming?

Jordan has been painfully chewing on things. She chews so hard, she makes faces like she's in pain. And I've been the victim of some pretty hard chews as well. I took her to the station yesterday to see many reporters and producers who have been begging to see the kids. Poor Jordan was tired and just a bit cranky on the teeth end of the universe.

We also had a prosthetic meeting yesterday. And the prosthetist has decided to try a totally different design to help Jordan get more range of motion. The current one is officially not fitting... Her shoulder has really grown. I'm pleased that we're going to try something that can suspend with fewer or no straps. The prosthetic she was using left a red mark that was a sign it wasn't fitting her arm properly. I'm happy we're going to try another attempt since the first wasn't working that well.

Other than that, our PT was finally given the ability to visit Jordan once a week. So we'll have 2 OT and one PT appointment a week. That will be really great for her. I worry about her shoulder... She uses it way more than a person with a whole arm would. That has to do damage in the long run. And that's why we do this therapy thing.

Oh. Cam was eating lunch while Jordan was eating her cereal and carrots this afternoon. It was so cool. Cam kept talking and cooing to her and she would just flash the biggest smiles. She thinks he is SO cool. I love it.


Showing off the girl

So my old friend Dan came into town. I was his RA at Syracuse. Anyway. He drove out into town to visit us for lunch. He happened to be visiting his family in the state, so he didn't have to drive far. I hadn't seen him in person in quite a while. Anyway, I kept Jordan with me for the morning so he could meet her. Cam had a field trip at school, so he didn't get to meet him. Bummer. Maybe next time.

So, Jordan showed off her smiling, her ability to play and shake her head... All kinds of stuff. It was fun.

Did I take pictures?

Nope. I stink. I guess I'll have to get Dan back into town sometime soon so we can catch a few pictures. Heck, at least one!

I think this may be one of my first times when I just totally forgot to take a picture. I must be slacking.


She's not a "baby baby" anymore

Eating outside
Originally uploaded by Jen.
I came to this realization just a few days ago. Jordan isn't a little baby... She's an interactive baby. She's becoming a person. She's not just a baby anymore. One of her teachers at school coined it today. She just isn't a "baby baby" anymore. And I'm kind of sad about that.

And at the same time I'm thrilled. Because she's thriving and growing. She's clapping and waving hi and shaking her head when she doesn't want to eat applesauce.

Today she did something I had mourned because I thought she'd never be able to play patty cake. Her teacher Sarah was thrilled to tell me how she played patty cake with Jordan today. I'm so excited. Jordan just claps her arm and got really into it. I'm proud. To think I was sad when she was born. To think I thought she wouldn't figure it out. My girl claps and plays... Just a little different than most. I can't tell you how cute it is when she claps. I promise to catch it on video sometime soon.

My growing up baby is amazing me all the time. And it makes me so damn proud.


Time to myself

After some more time with my aunt and uncle, I actually got out of the house to see a movie with a friend who had a birthday today. It was nice to leave for a little while and do something on my own. In the meantime, Randy probably had enough time with the kids. He tried to get Jordan to eat what he thought were sweet peas... But he was offering her broccoli that she obviously hated. He didn't realize the peas were defrosting on the counter.

Anyway, he survived his time with Jordan and Cam. I did download another piece of video of Jordan taking a bath. It's very sweet to watch her having fun.


Being sweet

My girl loves showing off how she can be sweet. She took a pile of naps and in between her sleep, she smiled and shook her head and did all kinds of things to show how sweet she is. It's awesome to watch her interact with Aunt Jan and Uncle Chuck. She's still obviously dealing with separation anxiety... But she's letting them hold her from time to time.

I also got her down on the floor to work on her ability to move around... She slightly scooted forward to get to a couple of toys and I watched her proudly get ahold of the toys that she wanted so badly.

Other developments of the day. After we all took a hike on a nature trail (Jordan slept through most of that trip), we went to a restaurant. I fed Jordan her avocados and I figured she was a little dehydrated... So I let her take a sip of my water. She drank it so well!! And she wanted more and more and more! It was amazing to see how easily she took to drinking from a cup. I think we might work on that skill. I also let her chew on a french fry. I don't know if that was good or bad, but I could tell she liked being involved in the eating process with the rest of us. I had this sudden realization later tonight that today was just one of the many moments that show how my baby is growing out of the baby phase. I'm already getting nostalgic.

Cool meeting

Today Jordan and Cameron had a chance to meet a really cool little girl who has a similar congenital amputation like Jordan. It was so great to see her do everything I know Jordan can and will do. It was so cool to see Cam hang out with her and never once needed to ask or talk about her arm because that's just who she is. She lives in a county nearby and we found each other through an organization called I-CAN.

I think it's cool Jordan will have someone to look up to as a guide, mentor and really... Just someone to bitch and complain to later when they grow up.

It was also so great to meet parents who know what we're going through. It's a little club that we've joined unwillingly... But with all the love and affection we can give to our daughters.

We also are lucky to have a weekend with my Aunt Jan and Uncle Chuck. They got into town just as the work week ended. They finally got to meet Jordan in person!! We had a great dinner with the kids... Jordan was so happy to show off her wonderful new skill of shaking her head on cue. Cam got to show off his new treehouse to yet another group of people. Hooray!


Lamb blankie is here!

We never found the original blanket, but the two I ordered on Sunday are here. I'm so happy. I grabbed one and gave it to Jordan immediately. I threw the other one into the laundry so she can love that one when she gets home.

So she's alseep and happy. She was doing okay without it. But she went to sleep a little faster with this little pink soft thing back in her life.

Today she did a very sweet thing. This past weekend we were pretty sure she was clapping... She was happily hitting her hand into her arm. When I started copying her, she kept doing it. A while later I clapped my hand into my arm and she copied me. Of course, I haven't been able to get her to do that with anyone other than Randy watching. So today I was commenting on how Jordan has been shaking her head back and forth like she was saying "no." So her teacher started shaking her head. Jordan watched, smiled and started shaking her head too. It was this sweet, subtle shake that made all of us laugh.

Tomorrow is an exciting day. We're planning to meet a family who has a five year old girl who has a congenital amputation similar to Jordan's. We're all going to meet them for lunch -- Including Cam. I discovered this little girl through an online amputee network. They don't live too far away from us. So we're meeting in a town 30 minutes away from here. I'm thrilled to have the chance to meet her and from what her dad says, she's so excited to meet a little girl like her.


Pretty nails

Happy with a pedicure!
Originally uploaded by Jen Reeves.
When I picked up Jordan from school today, she was sporting her first pedicure. She's wearing a very pretty pink. It was very cute. Her teacher was concerned I'd be unhappy with her new artistic nails. I don't mind at all. I think the last time I really focused on painting my nails was when I got married. I think she looks cute.

Anyway. Today Jordan had an OT appointment with our new therapist. It was so nice to be able to work at home.

I really think that extra travel takes some of her energy away. And she was naturally playing with her own toys in her own environment. We actually got her angry enough to try and move towards a toy while she was on her belly. She kind of pushed with her feet.
Pretty painted nailsI think it was awesome to see. The therapist and I also discussed how Jordan should play with her prosthetic... Even if she isn't wearing it. I don't know why I hadn't thought of that before. It's also been interesting to watch Jordan rolling... She's starting to find ways to go from her belly to her back... Although it can't feel good. She kind of gets stuck on her arm at her side and then she pushes through and gets onto her back. She doesn't freak out when she does it. So if it works, I'm not going to stop her. I'm just proud to see her trying to move in one way or another.



Solids seem to be throwing me for a loop. Jordan doesn't seem to be drinking as much milk as she used to... Or she's getting REALLY efficient when I feed her. It used to take about 15 to 20 minutes and now it only takes 10. I'm fretting that she isn't eatin enough. Randy thinks I'm crazy.

I fed Jordan twice this morning, she ate applesauce and cereal, 6 ounces, 4 ounces, 2 ice cubes of peas (I don't know what size that really is) and then I fed her again before bed. That's 5 milk feedings. That's normal. I'm not sure if that's enough. I called the doctor's office to make sure I wasn't doing anything wrong.

I don't normally doubt my feeding skills as a Mom. But Jordan is so laid back, I worry that she really won't demand as much as she needs. Her teachers say Jordan knows what she wants. She only eats when she wants to and only eats as much as she will eat. They can't wait her out and get her to eat more. So I really shouldn't be concerned. If she needs more, she'll ask.

Did I mention I'm making my own food for Jordan? I've pureed bananas, sweet potatoes and green peas. I smoosh up avacados. And I'm going to work on getting more creative soon. I promise.