So excited for Christmas!

I cannot begin to describe how excited we are for Christmas this year! It's our first Christmas with our dear little Leah and we've already helped her practice opening presents. She's pretty good but she's usually more interested in the colorful wrapping paper than what's hidden inside. But it's still a lot of fun to watch her try to figure things out.

Leah's discovering so many new things these days. She loves grabbing her toes and staring at them. When she gets excited, she raises uses her whole body to respond. She kicks her legs out and raises her arms high. It's adorable to see how excited she gets, especially when she's playing with her daddy. And Leah is our little social butterfly. She smiles at everyone and tells them stories She loves meeting new people and having all the attention focused on her.

We're definitely going to take tons of pictures this Christmas but, until then, here's few pictures of our sweet little girl for your viewing pleasure. :-)

 We took Leah to visit Temple Square for the first time a few weeks ago. Too bad it was raining and really crowded the day we went so it was a really short visit but it was a lot of fun and we had to get pictures to document another one of Leah's firsts.

 Leah's auntie Em came along with us. Leah sure loves her aunts.

 Leah loves to smile. This is the adorable look she gives to her many admirers. Doesn't it just make your heart melt?

 David, of course, had to have a snowball fight with his little brother after the first official snowfall of the season. It lasted a few hours.

 And JR won. David got hit pretty hard and was down for a few minutes. But he eventually got back up.

 Then they made a snowman and put Leah on top so she could be the head. She was our cute little abominable snowman.

 Our laughing little Leah.

 We took some family photos for our family calendar and came up with some adorable pictures. Leah is definitely the cutest of us all.

 Like mother, like daughter. My mom always closes her eyes during pictures and she obviously passed that down to Leah and me.

 Poor Leah! She's not too fond of being stuck between us.

 We sure love our little princess!

 We went to the midnight showing of the Hobbit a few weeks ago and David's sisters made hobbit dresses for the occasion.

Leah stayed home with grandma and had a wonderful time. She's just not too sure about what her mother is wearing.

Angels are made with 47 pieces

 Our little Leah is growing up! I can't believe she's already 5 1/2 months!! Here's an update on how much she's learned since the last time I posted:

Leah loves reading with her dad. Here she is reading the book Corduroy with her Corduroy teddy bear. So cute!

 Leah loves taking naps with her daddy. We have so many pictures like this. I can't help documenting this sweet moment. Leah has also learned that she won't fall asleep unless someone is cradling her, she has her binky in her mouth, and her arms are folded in front of her to keep her from grabbing the binky. Combine these three actions and she'll be asleep in no time.

 Leah LOVES candy!! Just kidding! She can't eat it yet. But everyone thought she was adorable at the trunk or treat so we came home with tons of candy. Leah also loves Tangled---or at least she will. David and I love the movie so we dressed up for Halloween. David was Flynn Ryder, I was Repunzel and Leah was Pascal. You can find pictures of us all on Facebook. I forgot to add our family picture on here.

 Leah also loves playing with her cousins. She has so many cousins who love playing with her on my side of the family (29 to be exact). We're eager to get her surgery done so that she can actually play with them though. We've had to keep her at a safe distance so she won't get sick. But during Thanksgiving break, we got to meet her new cousin, Emma. They're just 3 months apart and are destined to be best friends. :-)

 It was fun to watch these two interact with each other.

 We know which one is the bully... Just kidding. Emma was trying to grab at Leah's hair. Luckily she doesn't really have any yet.

 Speaking of hair, Leah got her first haircut! She has the cutest little fohawk on her head and some of the hair was really long. The rest of her head is covered in fuzz but I finally got tired of the Alfalfa look she had going and trimmed the top of her head.

 We really have found that "Angels are made with 47 pieces." Leah is the sweetest baby I've ever met, and I'm not saying that because I'm her parent. Or maybe I am. She hardly ever cries, just a few minutes of fussiness once in a while. She's such a motivated little girl too. She hasn't quite learned to sit on her own but whenever we're holding her, she'll lock up her legs to let us know she's ready to stand. And she loves standing! She gets the cutest little grin and makes the funniest noises because she's so proud of herself and wants to show off to us how strong she is. I think that when she learns to walk, she's going to take off running. But we're not in any hurry for that to happen just yet. We're focusing on sitting and rolling over first.

And finally, Leah has her parents wrapped around her little finger. We sure love our little princess and can't imagine what life would be without her. We're so blessed that she chose to come to our family and are excited to see her grow.

Laughing Leah

This video is so stinken cute! I just had to share it with you all. Leah was playing with her daddy and was having so much fun that she actually started laughing! We'd never seen you laugh that much and we had to get a video. David is pretty funny to watch as well.

We sure love our baby girl!

At the top of the world

Or... at least at the top of Mount Timpanogas.

David and I attempted our second hike up Mount Timpanogas last weekend. Our first hike up Timp was last year with David's family.

 This year, we attempted it by ourselves.

David loves hiking and is helping me to enjoy it as well. After our hike last year, we made it a goal to try to hike Timp again this summer. We knew it might not happen because we were planning on starting a family soon but we were hoping it might work at the end of the summer—after I'd recovered a bit.

So, three months and two days after Leah was born, we hiked Timp again.

We hiked 18 miles in 10 1/2 hours.


It was really tough.


We started hiking at 4 a.m. so we needed flashlights to see where we were going. The sky was so clear and the stars were so bright. It was really pretty. And, as the sun rose up in the sky, we saw the vibrant colors of autumn all around us. It was absolutely gorgeous!

But I was also really tired. Last year, I worked out in the gym 3-4 times a week and was in pretty good shape. This year, I'd recently had a baby so I haven't really been out much and my exercise has gone down to basically walking a few miles each week. So I was in a lot of pain by the end.

David was so great. He coaxed me along the whole way. He even had to bribe me with the promise of Coldstone ice cream in order to get me to the top. But we did it. We hiked all 18 miles and lived to see another day. :-)

 Here we are at the top of the mountain. We were both exhausted by at this time and we still had 9 more miles to go. Luckily, it was all downhill hiking and the view from the top was incredible. Otherwise, I might have refused to go on.

Here is a picture of Utah County. Can you see the red trees on the mountain? Beautiful, huh? We also saw a bunch of mountain goats as well.

My plan is to get in better shape for our hike next year—yes, we are already planning our next hike to Timp. We're going to do a lot more little hikes to work our way up to this one and I'm going to take Leah out on walks a lot more. We're not sure if we'll be brave enough to take Leah next year. She may be too small still and it was great motivation going down the mountain knowing that the faster we walked, the sooner we'd see our baby girl again. Either way, it's going to be another great adventure!

Thanks again to Grandma Landeen (Meemaw) for taking care of Leah while we conquered this mountain!

Leah meets world

With Leah's heart condition as serious as it is, we've been really careful about where we go and who can hold her. We've even steered clear of a few family reunions, social activities and church. So for the past few months, we basically only ventured outdoors for Leah's weekly doctor appointments and the occasional trip to visit family. We've felt silly a few times for being so overly cautious about Leah, but our doctors have told us that if she gets sick before her heart surgery, it could be really dangerous for her and she could end up back in the hospital. We definitely don't want to go through that again... or at least more than we already have to in the near future. :-)

It's been kinda hard to be inside all day, especially with the beautiful summer we've had but when I look at this adorable face, I know it's all worth it.

Isn't she so cute?!? She's getting so good at holding her head up!

 
We've already got a list of  things we want to do and places we want to take Leah next summer. And, with Leah's Down syndrome, we can get a Golden Pass that basically lets us get into any park for free or half off. Nice, huh? We definitely plan on making the most of that pass in the future.

But, we just couldn't let the summer go by without taking Leah on a few adventures. The past few weeks, we've taken Leah to my niece's baptism, jet skiing, fishing and hiking. It was fun to see most of my family at the baptism and it was fun to let Leah meet some of her cousins for the first time. And jet skiing was a blast. We put Leah in her playpen with a blanket over the top and she slept most of the time while David and I were able to go play on the jet skis. We really appreciate Deb and her family for letting us join their party. I don't have pictures of the baptism or jet skiing, but we did get some cute ones of Leah helping dad catch a fish and her first hike.

We went to Silver Lake with David's family on Labor day. Leah didn't like the sun in her eyes.

With her daddy's help, Leah caught her first fish while sleeping peacefully. Now that's talent!

Last weekend, we took Leah on her first hike to Stewart Falls in the Provo Canyon. It's a pretty easy hike of about 4 miles total with a really pretty waterfall. It was the same day as the BYU vs. Utah game so we wore our BYU shirts. Also, in this picture, some of my hair was getting in Leah's face so she's trying to grab it. She eventually got it and gave it a good yank. What a little stinker!

David sure loves his baby girl!

David's mom hiked with us. Leah loves spending time with her "MeeMaw"

We hiked to Stewart Falls the weekend before Leah was born. (I was trying to help induce labor and was curious to see if I could do the hike at 38 weeks.) It probably not my smartest move but it was fun. Also, my water broke a week early so it must have helped move things along quicker. I look like such a rolly-polly here.

So, of course, I had to pose on the same rock when we did the hike almost 3 months later. It was so much nicer to do this hike with Leah in a backpack than inside my stomach.

Next weekend, we're going to attempt hiking Timp again. I was in great shape when we hiked it last year, but this year I haven't exercised as well so I'm a little worried. But it should be way fun. But we plan on leaving Leah at home with her grandma while we attempt this hike. I don't think the altitude change will be good for her this year so she'll just have to wait till next year to hike to Timp with us. :-)

Leah's new trick

So I wouldn't be surprised if you're all sick of hearing us write about little Leah so much, but, really, who wouldn't be obsessed with this adorable face?

Leah's aunt, Melissa, crocheted this beautiful dress for her.

Ever since Leah came into our lives, it's seemed like one adventure after the next—at first it was hard and stressful but lately Leah has blessed us with some fun adventures. She's definitely found her smile. She smiles at everyone all the time except for when she gets mad at her dad but that is sometimes cuter than her smile.

Leah is finally gaining weight! She's up to 7 lbs and 5 ounces. We have to keep track of how much she eats and we're supplementing her milk with formula but she's finally gaining weight very well. We love seeing those cute little fat rolls start showing up.

We've been working hard to perfect tummy time. She usually works on it a few minutes a day and her neck is getting really strong. We also play this game where we put our hands by her feet and she pushes against them to propel herself forward. She's really good at this game. Leah really loves moving around and being active.

Finally, whenever we put Leah on the floor to play by herself, she's constantly trying to roll over. I don't know why she does this because usually when she does roll over, she gets mad that she's stuck on her tummy. It's so cute to watch her working so hard on it all the time. Most of the time her arm gets in the way and she gets frustrated. She'll get so close to rolling over but her arm will be in the way and she'll roll back over to her back. But she's gotten a lot better at sticking with it and making it through. Here's a video of Leah finally getting that arm out of the way:

Now if you watch this video and are saying to yourself "My child is older than 2 months and he/she hasn't rolled over yet." Don't worry Leah is kind of like an x-men. She has a genetic mutation that allows her to be extra-special. Most likely your child will learn how to read or walk or talk before Leah but she has the rolling over powers.

Last, we want to point out some silver linings of having a child with special needs.

First - You can brag about your kid without getting other people mad at you. Leah is an orange in the midst of apples.

Second - An iPad is in our future. There are some great apps for special needs children that help them learn how to read. The iPad is very easy to learn how to use and has been used a lot while working with kids who have down syndrome. David has been working really hard to convince Chanae to let him get one and he finally found a good enough reason for her to agree.

Third - With all the training that we are getting with Leah, having more children doesn't scare us as much.

Leah 2.0: Updated and Wireless

It's been a while since I wrote anything and a lot has changed. This post will have a lot of information in it. Hopefully you can remember your high school biology because we learned even more about Leah's genetics.

Leah has made some big milestones. First, she finally weighs more than 7 lbs. That means that she is as big as most kids are when they are born.

Second, she is off oxygen!

It's amazing how happy a baby can be when they don't have stickers on their face and a tube up their nose. Leah is beginning to smile more and scratch her face less. We are all very excited. We were expecting her to have to be on oxygen until the surgery (6 months). But at our last appointment with the cardiologist, he decided to check her oxygen saturation levels without the extra oxygen and see how she was doing. They put a little monitor on her foot and turned on the machine and it said that it was at 70. It should be in the 90s. They also didn't like how low her heart rate was so they decided to try a new monitor. As soon as they put it on her it showed her in the 90s. We fed her while they monitored her and she did great. We did an over night test a few days later (which she passed with flying colors) and now no more oxygen. We are keeping her on the heart monitor just to be safe but that doesn't bother her so much and we are no longer tripping over chords everywhere we go.

We blessed Leah in church last week. It was interesting because usually when you bless a baby you talk about how they will get married and go on a mission and have kids and all that stuff but Leah might not do any of that. So she was blessed that she can be happy and know how much we love her. It was simple but applicable to her.

Ok, now on to the complicated stuff.  In the last post, we mentioned that Leah had Translocated Down Syndrome. This is what we were told. It means that her extra 21 Chromosome was attached to another Chromosome. Yesterday, we went to see a Geneticist at the University of Utah Hospital. She asked me what we already knew and I told her. She corrected me by informing us that Leah has Down Syndrome and a Translocation. They are two separate things.

Let's start at the beginning. Our bodies are made of cells and the cells are made of Chromosomes. Each person has 46 Chromosomes. 23 from Mom and 23 from Dad. So we have 23 pairs of Chromosomes. Each pair is numbered 1 through 23. Leah has 47 Chromosomes—23 from one parent and 24 from the other. So she has a pair of each chromosome but she has 3 of number 21.

Now on to her translocation. Translocation is when chromosomes get mixed up. Part of 2 Chromosomes switch places. You still have all of the Chromosomes that you need but they just aren't in the right place. In Leah's case part of her number 1 is attached to her number 4 and part of her number 4 is attached to her number 1.

In a normal person, their chromosomes would look like this:

1  1    4  4
1  1    4  4
1  1    4  4
1  1    4  4
1  1    4  4

A perfect pair of 1 and a perfect pair of 4.

Leah's genetics look like this:

1  1    4  4
1  1    4  4
1  4    4  1
1  4    4  1
1  4    4  1

Notice how all the chromosomes are there. They're just not in the right place.

Now Chromosome pairs are not found side by side like this but it is easier to understand this way. This does not affect Leah's down syndrome whatsoever. But here is why it is important: It is very common for this translocation to be passed on genetically. Either Chanae or I could have this same translocation in our body. We don't know it because we have the different Chromosomes that we need they are just a little mixed up. However, like I said, children get 23 chromosomes from dad and 23 from mom. So in order to give these 23 chromosomes, a cell made up of 46 needs to separate. When it separates it is completely random which chromosome from the pair is given away.

So let's say that one of us does have translocation in our genetics. When the cells separate and then recombine to make a baby there are 4 different combinations.
   
 Parent 1          Parent 2(Translocated Genes)
1  1    4  4       1  1    4  4      
1  1    4  4       1  1    4  4      
1  1    4  4       1  4    4  1
1  1    4  4       1  4    4  1
1  1    4  4       1  4    4  1

     A
1  1    4  4    In this case all 4 good chromosomes came over and
1  1    4  4    there is no translocation in the baby
1  1    4  4
1  1    4  4
1  1    4  4

     B
1  1    4  4   In this case 2 good and 2 abnormal came over but   
1  1    4  4   there is no effect. Translocation has occurred
1  4    4  1   but it is balanced.
1  4    4  1
1  4    4  1
                  

   C
1  1    4  4   This one has too much of 1 and too little of 4.
1  1    4  4   Results in unbalanced transloaction and can
1  1    4  1   cause severe birth defects or most-likely a
1  1    4  1   miscarriage.
1  1    4  1

   D
1  1    4  4   This one has too much of 4 and too little of 1.
1  1    4  4   Results in unbalanced transloaction and can
1  4    4  4   cause severe birth defects or most-likely a
1  4    4  4   miscarriage.
1  4    4  4


I hope this doesn't confuse you too much.

It is not guaranteed that it is genetic. This could have happened randomly and Leah is just a genetic marvel like the x-men but that is rare. If we get tested and find out that one of us have it then our siblings may also have it. That is where the problem is. To get tested it is about $3,000 a person and that is with a 30% discount. Medicaid doesn't cover it. But what are we getting tested for? We are testing to see whether we will have a hard time getting pregnant and what our risk of miscarriage is. Won't that kind of reveal itself to us as time goes on? It is a tough decision that we haven't made yet.

We also found out that our chances of having another baby with Down Syndrome is 3.5 times higher than the average person. The only reason for that is because statistics have spat out that number. In reality we don't have any different odds than anyone else except for that if it can happen once it can happen again.

2 months ago I had no idea what Down Syndrome was, how many Chromosomes were in a human cell and I hadn't even heard of translocated genes. People always said that children will teach you a lot but this wasn't exactly what I had in mind.

Still, Leah is the cutest little girl and we love her more than I could have ever imagined. This week I went to scout camp for the week and I leaned 2 things. First I leaned that I really miss my girls when I am away and second I learned that girls are way better than boys.