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.


4 Months Old!

4 Months Old!!Jordan turned four months old today! I spent so much time snapping pictures today that I almost forgot to post on here. Jordan enjoyed her 4th month birthday by finally taking 3 naps. Three good, long naps. And that should give her the chance to sleep 12 hours through the night. It won't make up for the sleep she lost this week, but it will help her get back on track in the sleep department.

It's fun to watch how Jordan continues to grow by the day. She likes to sit in her high chair and play with toys. She coos and squeals when she's having fun. There's this little green frog toy that my Aunt Trish gave Jordan that just makes her smile every time the frog ribbits. Cam keeps walking up to her and says: "Who's that happy baby?" Very cute.

Playing ballAn amazing thing happened when we were playing on her play mat... She tried to grab the dangly toy ball with her arm and hand. They didn't quite connect, but she got that toy into her mouth. She's obviously moving into that teething mode when everything can help her make teeth. Cam's first tooth popped out in his 5th month and Jordan is moving in that same direction. Anyway, she's bringing it all together. Playing footsie on the couchHer teachers thinks she's been compensating by grabbing toys with her feet. I've noticed she does a lot of playing with her feet as well... But I also remember Cam playing with his feet. So it's all developmental. Jordan's probably just playing with her feet more because it's much easier to bring her feet together than bringing her hand and arm together.

Tummy timeI'm a member of BabyCenter.com. It's a place I've gone to since I was pregnant with Cameron. The website sends weekly developmental emails. I've promised myself to not pay much attention to those things when it comes to Jordan's development. But yesterday I got the first developmental email that said something I know Jordan can't do yet. I'm okay with that, but I realize the inner competitor in me wants to help Jordan beat down the delay speculations. She is improving her abilities during tummy time. To me, that is a great success.


Fantastic OT day

I'm posting kind of late -- It's actually Thursday now. But I wanted to mention how Jordan rocked at OT today. We were encouraging her to try to roll onto her belly. For the first time, she really lifted up her head and helped her shoulders move. She actually moved onto her little arm and held her body up for a short time on her own. She really lifted her head up more than I've ever seen when she was on her belly.

It was exhausting for her, but she did a GREAT job. I was very proud.

Jordan's big problem is getting sleep when she's at school. There's a little girl who has a ton of energy and thinks that any noise she makes must be VERY loud. Anytime Jordan is trying to get to sleep, this little girl starts making noise and Jordan just gets upset and can't get back to sleep. No fun. She'll have to learn I guess. But in the meantime, I've had some pretty unhappy nights getting her down to bed. I'm so glad I can see her in the afternoon for a feeding or to take her to an appointment or I'd barely see her in good spririts these days.


Our first step towards a new tool

Plaster faceWorking Randy's shift and caring for both kids in the morning is insane. I wake up early, get the dogs ready, convince Cam to get dressed and eat and then I rush to wake the baby (which kills me to do by the way), dress her, feed her, pack her into the car seat... make sure I have all the baby supplies for school, convince Cam to get into the van and get buckled up, drive to school, unload the kids and get to work before 8am is exhausting. When the alarm went off this morning, I almost fell back asleep.Stop that!

That's because Cam was waking up ever hour or so... And then Jordan cried in her sleep and I rushed in... To find her sleeping again. My mommy ears were on overdrive by that point.

So once I had my day time reporters ready to go, I helped with various newsroom issues and got ready for the big part of the day: Getting Jordan to the prosthetist and get her fitted for her prosthetic.

When I got to school to feed her and take her to the office, she had just fallen asleep in her teacher's arms. Yikes. So I picked her up and she kept sleeping in my arms. That's tough to put a stop to... But she eventually started moving around enough to get a little meal in... But she cried most of her way to the office. She really needed to be in bed. Poor baby. But we got there and she was in good spirits. The resultShe smiled and cooed at Gary, the prosthetist. So he did some measurements and started wrapping up her arm. First he put a nylon sock on her arm to help make it a little easier to remove the plaster. Then he soaked the plaster and started wrapping. Jordan didn't mind at first, but as that plaster got heavier (and apparently it heats up inside when the plaster starts drying), she started really getting upset. By the end, we had a pretty good plaster mold and a very plaster-covered baby (notice the top picture).

The next step? Gary will try to create a test socket -- the part of the prosthetic that will fit Jordan's arm. He'll test it a couple of times to make sure it fits before he actually builds the real arm. We're going to do this on a pretty fast track so we can keep up with Jordan's growth and make sure she can fit into this tool. We're thinking it's going to be a three week process. Tomorrow, we return to OT after a week off and Daddy comes home tomorrow night. (Mommy is really looking forward to that!)


Coughs and sneezes

When I got to school to pick up the kids, Jordan had crusty goo under her nose and they told me she hadn't slept since 1pm. Not a good sign. Now I can hear her over the monitor coughing and sneezing.

I think I didn't do a good enough job to keep her away from her brother's cold.

I hope she can keep sleeping and get some rest. She fell asleep tonight in the most unhappy way -- All kinds of cries. It was miserable.

Tomorrow we fit her for the prosthetic. It should be interesting to cast a little baby's arm... Especially an arm that is so active at the base.


Ups and Downs

Posing on her quiltI realize it's natural to feel up and down about Jordan's arm. I spent the day at the swimming pool today with Jordan and Cam and watched all of the families and all of the children. An arm is just a piece of a body. There is so much more to my little, happy, giggly, sweet girl. So it kind of bothers me when I'm in another funk about it. It started with yesterday's comment at work. I don't know why I'm letting it affect me. I guess this just comes with the territory.

I recently hooked up with a new online community for children amputees. For the first time ever, I've had the opportunity to talk to a mom of an 11 year old girl who is a left above elbow amputee. By the way, in the amputee community, that is LAE. My girl is classified as LAE. AE - above elbow, BE - below elbow, AK - above knee... it goes on. Anyway, this mom told me they tried the prosthetic route and it never worked. And of course that gets me wondering if going the prosthetic route is even worth the pain and stress on my baby. I still believe it's worth helping her learn what these tools can do for her, but I'm starting to understand why some people go to the no-prosthetic-camp. The hand is such a sensory tool for us. When you don't have a hand, you still need whatever arm you have left to aid in your sensory needs. A prosthetic blocks that sensory information that can be gathered from the arm. For this little girl, they started prosthetics a 10 months. She advanced to a harness strap system that helped the prosthetic elbow bend, and a hand that opens and closes. Her mom told me it got to a point where the only time she wore the arm was for occupational therapy... And it became frustrating. They found that their daughter didn't really need it. They live with the attitude: "If it ain't broke, don't fix it." So I guess I'm also mourning the fact that my kid may not need a lot of the help that I'm working so hard to give her. It's confusing and I don't really know how to feel.

Another interesting thing about this group that I just found out about is there is another child in my state that is an above elbow amputee. Hopefully a parent of that child will join in on the online conversation and we might be able to meet up someday.

In time, I have accepted the fact that my little girl looks different and doesn't have to have a fake arm to complete her. But I still believe that she deserves the introduction of these tools. I guess I figured it would be a struggle, but it would offer some assistance. I worry that all the work may not actually help her. I pray that's not the case. But only time will tell.


Did she really say that?

Sibling love on a quiltSo I was work today showing off pictures of Jordan and Cam because that is fun to do. A woman in a different part of the building where I work started talking about a photo shoot. She started saying something about using my kids in the photo shoot... when she says something like: "Oh but Jordan isn't 6 months old and her arm...." and she trailed off. Oh yeah, we can't take pictures of my daughter because of her arm. Geez. It took me a good 10 minutes to let that comment soak in.

Randy says I should get used to it. Oh well. Cameron might take part in the photo shoot. He's cute too.

You know, working in an industry that is so image conscious is kind of tough. In the TV news business, your job is to deliver information. You don't want to put anything on the air that turns the viewer's attention away from the topic. Jordan's arm would pull the viewer's attention away... Unless the video was about her arm. That's why the broadcast news industry has that underlying pretentiousness. We need the viewer to see a consistency of performance so they can pay attention to the information and not the person or people who are presenting the news. Jordan is special enough to always show a cosmetic difference. No need to hide it. But we may not be able to put her in front of a camera all the time because we won't be able to convey the intended message. In this image-conscious culture, that's not easy for me to swallow.


16 Weeks Old

16 Weeks Old!My girl is getting so big. I didn't really think about the weight check they did for Jordan at Shriners. But I heard them say something about 7-point-something kilograms. I just did a conversion of what 16 pounds is in kilograms: It's 7.2 kg. That means Jordan is probably around 16 pounds. 16 pounds!!

We have Jordan's big 4 month doctor's appointment next Thursday. I look forward to seeing how she's breaking weight records. Of course, if she continues to not eat while she's at "school," she could easily lose some of that weight by next week. I'll pretend not to worry about that.

Wow those are huge eyesI bought Jordan a very, very sweet 2 dollar sun hat. I took a TON of pictures of her in it yesterday. I downloaded the pictures into my computer today. It's awesome. Cute kid. Fun to stare at. She was so full of smiles today. Oh -- And I got to enjoy the first true reason why a minivan is so great. After Jordan's doctor's appointment this morning, she was HUNGRY. So I put her in her car seat and started the van up to take her to school... When I realized, I was driving a portable living room. The chairs are roomy and comfy enough to pull the baby out of her car seat, turn on my iPod and feed her. Kind of cool... In a strange Mommy way.

Let the prosthetic process begin!

Today Jordan and I met with a team of doctors, our prosthetic guy and our physical therapist. We discussed what kind of prosthetic will work for Jordan and the process is now in the works. Next week, we're going to have Jordan casted for the prosthetic and that will be followed with a couple of fittings before they put her into the real thing.

We discussed all kinds of options and functions for the arm. The prosthetist talked about building the arm like the flexible neck of a lamp -- so it can bend like an elbow. He is going to be making it all up on the fly and it will be interesting to see what he comes up with. We're also going to make sure the arm can hold onto things so she can play with toys.

My biggest concern is how can we keep up with her growth and prosthetic needs while insurance chugs along so slowly. This is the most wonderful part of the conversation: The prosthetist said he'll never let insurance stop the prosthetic process. He'll even bill it as a research and development expense if he has to.


Another sign how we are truly blessed. Jordan is so lucky to have support of this group of people. I know the therapy is making a difference. The doctors were really amazed by her improved range of motion. Our physical therapist was happy to see her moving around as well.

We did do more developmental tests and she remains low enough that we should be able to move forward with getting into the First Steps program. I'm hoping that will help me drive around down a little less.


No thank you

Yeah. I went back to work today. It's no fun to have that many days with her and then have to drop her off to school again. She didn't want to let go of our days together. She wouldn't take a bottle and didn't really care if she was gong to starve. I fed her at 8:30am and she would not eat until I returned to school at 2pm. That is 5 and a half hours between food. That blows.

Her teachers think she grew up A LOT this past week. I think that's true. She slept SO much while she was away. I figured she was growing.

Tomorrow she gets to meet again with the PM&R doctor who will hopefully write the prescription for the prosthetic. I'd really like to get things moving now that she's recognizing her arm. I'll be sure to let you all know what happens.

My photos!

I'm happy to have my camera back. I left it in the car when Randy dropped me off at Barry's house. So I finally got my Easter shots. Some of them turned out pretty darn good. I'm so happy I got one good one of the two of them in their Easter finest. Two kids is tough for good photos!

I'm exhausted. I had to grocery shop tonight... After getting home and trying to organize life a bit, I realized we had NO food to eat. No fun. So now I'm going to finally head off to bed. I'm leaving my computer on to upload a TON of pictures on my Flickr site. Enjoy the shots. I'll be sure to get titles and various descriptions for the photos soon.


Mission completed

We have returned from our Shriner's appointment... And of course the experts there think Jordan's amputation was caused by something different. It doesn't really matter to me. But they think what caused it was syndactyly - where there was some kind of vascular incident that prevented the arm from growing around 4 to 6 weeks gestation. They think her little skin tag on the end of her arm was some type of finger. We may never know. But they think she looks fantastic and healthy. We got to meet with a prosthetist and we'll probably start working with him sometime after she's 6 months old.

I consider Shriners to be a great place to help us get additional prosthetics... Like for riding a bike, swimming, climbing... Who knows.

On Thursday we're going to meet with the PM&R doctor who will hopefully give us the green light to move forward with Jordan's first prosthetic. I'm hoping it will be a tool that helps her on her belly -- her neck strength isn't up to par just yet. Hopefully that tool will help her. Only time will tell.


First Zoo Trip

Jordan got to go to the zoo for the first time... Sure she didn't realize it, but it was cool. My cousin Mike and his two oldest kids joined us at the zoo for some fun for a few hours. The challenge of the day: I left the stroller in the van when Randy went home yesterday.

I'm an idiot.

So I carried Jordan around the zoo for three hours. It was fun and Jordan was such a trooper. She slept in my arms quite a few times and smiled at strangers. She did need to eat a little -- so she can now add the zoo train on her list of places she ate with mommy.

After the big zoo trip, Jordan took a huge nap... and then went to a restaurant with her uncle and I. By the time she got home, she was fast asleep. She's going to have a big day tomorrow at Shriners. I'm nervous for some reason. Probably because it's going to be such a long day. I do look forward to meeting with more experts and get more thoughts on how to help Jordan.


Hoppy Easter

Yeah it's a pun. But I dressed my kid up in a cliche on this holiday. I couldn't help it. I didn't have a baby the last time we had a first Easter. (Cam was born the day after Easter and then he was more than one year old when we got to the next year's Easter) So this year I did it up. Jordan got presents from the Easter bunny and she seemed to actually like a couple of them. And of course, I had to buy fuzzy bunny ears to dress her up in. Sure they don't really fit and her head got a bit heavy for her to hold up. But I took pictures anyway.

It was wonderful to be able to show Jordan off to many more family and friends... It's too bad she needed so much sleep. (But she's growing, so I won't complain) She didn't get to be very social yesterday. But the rest of us had a lot of fun being silly. We're headed back to Missouri today. Then Jordan and I get to hang out at Uncle Barry's house for a day and a half. I don't really know what to expect from my trip to Shriners. Some people I've talked to say they can do wonderful things for us, others say they don't do it right. So it will be up to us to decide who is right. I'm just happy to talk to more experts... The more the merrier. I have to say though, her latest arm movements and attention to her arm make me feel like the therapy we're doing at this point is really making a difference.


Needing sleep

Jordan has had her smiles today... But she has really needed her sleep. Which is a huge bummer since we finally got to introduce her to Uncle Brett, Hunter and Lindsay. It's been wonderful to see them. It's amazing how people have gone out of their way to see Jordan and visit with us.

Of course, Jordan got even more outfits. That girl is full of style. I have to consciously make sure she wears all of the new clothes she owns. It's a bit more challenging when the weather is so warm! She's been able to wear some of her summer clothes. Thank goodness -- because I worried those clothes wouldn't fit her by the time it was hot outside. But global warming saved the day.

You know, I haven't gone out of my way to take Jordan out. I don't this it's on purpose... It mostly to make sure she gets her naps. But I haven't tried to let strangers meet her here. I should. I really feel like the more I go out in public, the more comfortable I am... And the more comfortable Jordan will feel. We're planning to attend a church full of strangers. I'm sure that will meet my stranger quota for the week.

Come to think of it... Cam hasn't been out much either. I'm just a worry wart.


More video

I just downloaded video of Jordan checking out her little arm and moving it to her face. It's very exciting. It's also exciting that she's sitting with her great-grandmother who is doing amazingly well after she was sick just last month.

I love this video thing. I'm such a geek. If this video window doesn't work, you can find the video online at the YouTube site.

Showing off

I think Jordan discovered her little arm yesterday. After weeks of exercises and playing with her little arm, yesterday she started lifting it up to her face, touching her lips with it. I was very excited. It's the smallest things that are very exciting.

She's smiling and cooing to all of the family and friends she hasn't met before as we visit Grandma and Poppy's house. She's also sleeping well... Even though she has to sleep in a room with her Daddy and I... And Daddy snores. Cameron would never sleep long when he knew someone else was in the room with him. So we have more proof of what a good girl she is.

Jordan seems to enjoy the extra attention she's getting here... But I wonder if she's getting used to extra attention. The women at her daycare give her all kinds of extra love and affection. Lucky girl.


Thumb sucking and not sleeping

Yup. That's a picture of her sucking her thumb. The girl sucks it more and more by the day. It's another thing I need to let go. I've prayed she wouldn't find the need to suck her thumb or need a pacifier. But I'm going to let it go.

What I'm not letting go well is how she's not falling asleep the way she did when she didn't go to day care. I realize I can't have everything I want when I hand my baby over to someone else's care. But I'm sad it took some crying for her to go to sleep tonight. She cried before every nap this weekend. It's just hard to watch after all the work I did before day care.

We're headed into another week... This one also includes a trip to Poppy and Grandma's house. Hopefully we'll get to see our friends the Bells. That will be very special.

Cool quote

"Our lives are not determined by what happens to us but by how we react to what happens, not by what life brings to us, but by the attitude we bring to life."


The joy of failure

Jordan completed her developmental test today. She was on the edge of failure because she really doesn't have much of a range of motion when it comes to her head strength. She's really good at holding it up, but she does not like to turn her head much. It's amazing the things that happen to the body when you're missing the majority of an arm.

But, she's a sweetie. She was so exhausted yesterday. She didn't get to sleep anywhere close to what she's supposed to sleep because I had to take her to OT. Not to mention, I don't think she's used to falling asleep in a room that has a light on and has babies crying, screaming, talking, babbling and cooing almost constantly. She'll get there. The most incredible thing is how she is still sleeping through the night. She's a very, very good baby.

It's strange how we are rooting on her failing these developmental tests. The gut of my stomach is so sad. But my brain understands that this is only temporary. We're going to be able to help her live a very normal and comfortable life. But Jan, Jordan's PT says this is the perfect window to show a developmental delay. Once she's able to sit up, the delay won't be as big. And since we're trying to get into a state-run program that will only take her with a 50% delay, this is the best time. By next week, she will be able to fall into that category.

So as we fail, she is making big strides. During her OT yesterday, she could roll onto her belly if we placed her on her side. She did not show any sign of pain... So we're guessing the screams on previous tummy times were just because she was mad.

I other news, I'm going to boost my street cred as a Mommy next week when we become the owners of a minivan. Randy's parents found a deal and they're going to help us afford it. I'm touched by their kindness. We are very fortunate. And I'm going to hand off the hot rod car that is so fun to drive. I think life with the minivan will really fit our new life with two kids.

I'm happy we're finally at the weekend. Randy and I are planning to go out on a date. Our 8th anniversary was 4 days ago. So we have a babysitter coming to the house and we're going to do something. Maybe dinner. Maybe a movie. Who knows.


So Tired!

Returning to work has been nice... But running Jordan back and forth to various therapies is exhausting. I need nap time or something to get through each day. This morning Jordan slept 13 hours and was awake for an hour when our PT came by for a meeting.

Jordan was too tired to really take part in the meeting.

I got an update on the doctor who was willing to help call and find out how we can get clinical consent to enter the state program that helps with therapy. She talked to people in every level of the program... And no one will accept the possibility that Jordan needs care. Insane. So our physical therapist is very focused on testing Jordan and finding a developmental test that she would fail or at least show a 50% developmental delay.

The first test Jordan took today, she was in the 10th percentile... But needed to be in the 5th. When Jordan started the second test, she wasn't able to complete it. She was too tired. So the therapist said she'll return to our house on Saturday at a time when Jordan is in a good mood. Poor baby is exhausted.

I have a ton of meetings today and I hope I find a chance to go by school and feed Jordan at least once.


Jordan's New World

You know I'm lucky Jordan has these huge eyes and expressions and the love of cuddles. She's already getting so much love and affection from her new care takers. I drop her off late and pick her up later than most of the babies, so she gets extra one-on-one time because of that. I've spent a good amount of time in the room with the babies since Jordan started since I feed her once a day. Yesterday I analyzed what these babies can do. It's incredible what little babies learn in such a short time.

Jordan is already making friends! Okay, I'm just making friends with the babies' Mommies... But here's a picture of Jordan with her new friend Lily. Jordan and Lily don't know this, but Jordan's been wearing Lily's little baby clothes. Her Mommy has been very kind with the hand-me-downs. Anyway, it's cool to see the two of them hanging out.

This morning, Jordan woke up sleeing sideways in her crib. It's the first time she's physically changed positions in her bed. Cam would move all over the place from a very young age. I'm excited that Jordan's movement means she's starting to leverage her legs some more and get us a little closer to possibly rolling over.

We're doing OT today in the afternoon. I'll probably take her back to school after that to crash after an hour or so of exercise. That's exhausting stuff.


Daycare blues

Jordan did just fine today at school... But I'm kind of sad. I had an okay day at work, but I missed my girl.

We had another OT meeting today on campus. We are looking at ways to help Jordan with reaching out at toys... And we're thinking a little lift with the help of a hand towel may make a difference. Also, the OT grad student who is working with us plans to come to our house and visit with Jordan when our PT person is here as well. That way we can talk about what we need to help our daycare providers know about Jordan's needs. I want to make sure Jordan is getting help from everyone who cares about her.

You know, I don't think Randy saw Jordan awake once today. This going to work thing is really hard.


She was sleeping!

I stopped by school for Cam's birthday party... And I figured I'd visit her and possibly take her back to work with me.

She was sleeping.

In a swing.

I'm glad she was sleeping. I was a little stressed out about the swing thing. But I'm going to let go of that. As long as she sleeps at night, I'll be okay. I need to let go of the little things and make sure we're all happy with the big things.


Now I'm going back to work and not dwell.


Busy for the Boy

Jordan has been sleeping non-stop until today. Her last three days at the station were not much more than major stretches of sleep. I can't complain. It gave me time to reconnect with the old job... But she was still with me. I'm including this picture of the little office where she slept. I think it was a pretty nice set-up. It was dark, kind of quiet and cool. She really seemed to enjoy sleeping in there.

Anyway. Today was Jordan's big brother's birthday. She didn't seem to act like it was an unusual day, except she pooped a lot more than most days. (I'm not sure what that means) She joined us during gift opening and the cake... But she stayed home with her grandparents while the rest of us parties at Chuck-E-Cheese. Jordan didn't mind a party hat, for a very short period of time. Juggling her feedings and hosting a big kid party was rough. Taking care of Jordan's needs and not sleeping much so I could decorate for Cam's parties... Not easy. I'm exhausted.

Kids. Isn't it amazing what you'll do for them?

I'm drained from giving every ounce of energy I have for both of them these last few days. I'm not complaining. It's worth it. Not to mention, our house is looking really clean. Another up side of preparing for a big party.