31 for 21: Day 3

I wish I had something interesting to write about, but it was quite an uneventful weekend. Austin and I went to a doctor appointment on Friday (for me). After the appointment we went shopping. Austin loves to stroll and look around at everything. We always enjoy going to the mall! I could probably spend a small fortune on baby clothes. I constantly have to remind myself that he’ll outgrow what I’m looking at in a month or so before deciding to buy it.

Okay, time for another fact about Down syndrome.



You’re so young. I thought only “older” women had babies with Down syndrome?
In my case, age isn’t relevant. In most cases of Down syndrome, age isn't relevant.

How can that be?
Researchers have established that the likelihood that a reproductive cell will contain an extra copy of chromosome 21 increases dramatically as a woman ages. Therefore, an older mother is more likely than a younger mother to have a baby with Down syndrome. However, of the total population, older mothers have fewer babies; about 75% of babies with Down syndrome are born to younger women because more younger women than older women have babies. Make sense?


Furthermore, Austin has a rare form of Down syndrome due to the fact that my husband is a balanced carrier. I will elaborate on the different forms of Down syndrome/Trisomy 21 in an upcoming post.

More tomorrow. :)


Blessings,
K

Short and Sweet

I have a new layout! I wanted something new, unique and fun. I hired Merydwen, owner of My Lovely Designs to create a custom design. She’s so creative and her talent goes far beyond web design, be sure to check out  her website!

Today is the notorious Texas .vs. OU game in Dallas. I’m an Aggie, so I’m rooting for OU. Even though I’m an Aggie, I would typically root for Texas during this game. However, Ryan’s intense disgust for The Texas Longhorns has rubbed off on me during the past 4 years, so we’re both rooting for OU. Ryan and I were actually engaged during the Texas .vs. OU weekend of 2008. In front of several family members, he got down on one knee and proposed. I screamed like the “girly girl” that I am. Everyone in the restaurant started clapping. It was really sweet. I’m very lucky and blessed to be married to my best friend.
This is going to be short and sweet. I’ll leave you with a randon grammar lesson fact about
Down syndrome:

The proper way to write “DOWN SYNDROME” is:

Down syndrome…Capital D and lowercase s. It’s not “Down’s syndrome. It’s Down syndrome. If you’re referring to a group such as, “The Down Syndrome Guild ”, it would be appropriate to capitalize the “s” in Syndrome because you’re referring to an organization or foundation.
In conclusion:

Down’s syndrome
Down syndrome - correct.


Who cares if DOWN SYNDROME has the “proper” capitalization? Chances are, I may be in the minority because I DO care. Like it or not, the way you speak and write reflects greatly on you as a person. Think about it...you’re advocating something near and dear to your heart on paper or even better, through speaking. Will the person or group of people take you seriously if your grammar usage is incorrect?


Just a thought. I promise this will be the only mention of grammar during the month of October!

31 for 21

October has ALWAYS been my favorite month and for several reasons. It looks like I can add another reason to the list because October is also Down Syndrome Awareness Month! I’m participating in 31 for 21. I’m committed to writing here EVERY day in October for the sake of promoting awareness. As an advocate for Down syndrome, it’s very important that I make everyone around me more aware. Moreover, I want to put to rest all the misconceptions about Down syndrome. And believe me, there are a lot of misconceptions.

Austin’s surgery has been moved up, yet again. This has been quite an ordeal. The move up date is scheduled for December 3rd or December 10th? I was told one date, but it says another on paper? *makes mental note to call and find out for sure* Basically, Austin will receive testosterone injections monthly until his surgery. I trust his urologist and feel good about our plan.



We’re now using an exercise ball for therapy. I was so excited to use the ball and just knew Austin would have so much fun during therapy. Apparently, Mommy was wrong. Austin screamed like a banshee when his therapist put him on the ball for the first time and worked with him. I was shocked because this is the same child who loves (and I mean LOVES) to be “thrown” in the air. I think he just needed to ease into it, because he did fine when I put him on it and did some exercises. I don’t care how old are you, the giant exercise ball is fun.

I scheduled a photo shoot for November. We have a lovely and gifted photographer. I can’t wait! Some of the shots will have a Christmas theme and I’m hoping some of these will be used for our Christmas card/picture. I wanted to wait until he could sit up on his own before doing professional pictures, but I suppose that’s not so important. It’s not like our photographer can’t capture his cuteness because he doesn’t sit on his own, right?



Well, this is my FIRST 31 for 21 post. There will be MANY more to come and I hope none of you get sick of me.

Blessings,
K

Going Going Going

It feels good to finally sit down and put my feet up. I feel as though I’ve been going, going, going…and I’m certainly no energizer bunny.


I’m incredibly happy to report that Austin is officially sleep trained. He sleeps in his crib and there are no tears. He’s been sleeping through the night lately…which is beautiful. Austin is such a morning person baby. He used to wake up at 7 in the morning, which is totally doable for this not so morning mommy. However, now that he’s sleeping through the night, he wakes up any where between 6-6:15. He has an internal clock, just like his Daddy.

Last week, Austin decided that he was going on strike…with his bottle. To say that he “refused” his bottle is an understatement. He threw a fit and acted like we were torturing him each time we held the bottle to or even near his mouth. The strange thing is: he devoured his baby food and fruit oatmeal. Formula is his main source of nutrition until age 1. I’m thankful he does well with solids, but they don’t contain the adequate calories/nutrition that he needs to grow and thrive! I took him to the doctor and they determined that it probably had to do with his teeth. I’ve been saying it for a while now, but he’s about to cut a tooth. The doctor said he’s showing all the signs. He’s just having such a hard time with his teeth.



Therapy is going well. We’re working extra hard and Austin is extra stubborn. There aren’t any tears, but there sure is a lot of screaming and protesting from my opinionated 7 month old. His therapist said that a lot of babies with Down syndrome are stubborn. My baby certainly is and it may have something to do with Down syndrome. On the other hand, I have to admit that he comes by it honestly. ;-)



The Buddy Walk is coming up in November and we’re so excited! One of my close and dear friends, Amy, convinced her company to be a corporate sponsor for our team, Austin’s Angels! Also, one of my other dear friends, Shannon, met her personal fundraising goal for Austin’s Angels in less than a month. I’m constantly amazed by how generous and caring people are. There are donations on our team page from people who don’t even know Austin or us. He has so many people who love and care about him and we are so, so thankful and grateful. It’s very important to Ryan and I that our family and friends treat Austin just like any other kid. That’s how we treat him. This has never been an issue because they all do. I know they’re aware that he‘s different, but they treat him like a baby first and foremost. You can tell that they truly love him…just for him. I’m constantly reminded how lucky and blessed we are for all the amazing friends and family -you know who you are!

Austin’s urology surgery is less than 2 weeks away. It will actually take place on my, *gasp* 26th Birthday. The best birthday present ever would be for his surgery to go well, with no complications and most of all, a minimal amount of pain for him. My parents will be in town for his surgery...we are so thankful for their help! They are truly the best parents and grandparents, ever.

Life is busy, but we’re lovin’ it!

Blessings,
K

Unplanned Anniversary

Several women become mothers after months or even years of trying. I don’t fall into this category because Austin wasn’t planned…or perhaps I should say he arrived a few years premature. We found out we were expecting 3 weeks after I purchased my wedding dress. Ryan and I always knew we wanted kids, but we planned to wait a few years. I’m sure you’ve all heard the saying, “If you want to make God laugh, tell him YOUR plans.” This phrase couldn’t hold more truth.

We are quickly approaching an anniversary. It was a year ago that we found out that the baby that was growing inside me was a little boy. It was also on this day that my OBGYN nurse took blood work for a Quad screening that I thought was “routine.” This test changed my entire pregnancy. I was never told that this test is completely optional and that a lot of women refuse this test due to false positives. The quad screen test is a maternal blood screening test that looks for four specific substances: AFP, hCG, Estriol and Inhibin-A. The results of this screening will tell if you’re at “high risk” for having a child with a Genetic Disorder based on the levels and your age. I knew when the nurse called me at work 3 days later that it couldn’t be good news. I felt my heart drop when she informed me that my Quad test came back abnormal and high risk for Down syndrome. Down syndrome. I had never thought about Down syndrome before…and why would I? I asked her what my chances were and she replied, “ 1 in 10,000.” She then went on to tell me that, “This office has never had a baby with Down syndrome based on a positive quad test. You’re young. You’ll be fine!” She referred me to a Perninatologist for a level 2 ultrasound. I went home and researched the quad test and noticed that false positives are common and most women go on to have perfectly healthy children. I also realized that my risk COULD NOT have been 1 in 10,000 because that's the complete opposite of high risk. Let’s just say it wasn’t the first time this particular nurse had no idea what she was talking about.

I had to wait a week before seeing the Perinatologist. It was the longest week of my life! It turns out, my chances were NOT 1 in 10,000. They were 1 in 105. The level 2 ultrasound only revealed that Austin had a thick nucal fold. Everything else looked normal. The Perinatologist gave me a 2% chance of Down syndrome and encouraged me to have an amniocentesis. I declined. I went back to see him a month later for a follow up. He said an amniocentesis would be a good idea so we could “go over our options.” The termination rate for a prenatal diagnosis of Down syndrome is 90%. I knew what he was getting at, but I stood my ground. I knew I would love Austin no matter what. I mean, he had fingers and toes…and really strong legs that kicked me. I could feel him squirming around. Down syndrome or not, he was meant to be mine. I tried to stay positive, but Down syndrome was always in the back of my head.

We didn’t plan this pregnancy and we certainly didn’t plan on having a baby with Down syndrome. We can thoroughly plan for the future, but ultimately we have no control over what happens. God gives you blessings you didn’t know you wanted. I’m at a point where I finally understand why God gave us a child with Down syndrome, even though we didn’t ask for one. Life is good. God is good.

P.S- We saw the Kidney doctor today for a follow up and there is NO obstruction. Austin's kidney function is great! He has a clean bill of health. We will go back in 6 months for a renal sonogram to make sure the swelling has resolved.


“For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope.”
- Jeremiah 29:11