Happy World Down Syndrome Day

Today is VERY special. It’s WORLD Down Syndrome Day! Why 3/21? Well, every individual born with Down syndrome has 3 copies of his/her 21^st chromosome. Those of us that were not born with Down syndrome only have 2 copies of the 21^st chromosome. Individuals with Down syndrome have an extra copy. I’m pretty sure that extra chromosome is all the extra good stuff-sprinkled with an extra dose of STUBBORN. 

Austin has opened my eyes to a completely different world. It’s a beautiful world with acceptance and love. He has made me more aware to the fact that those with disabilities have strengths and weaknesses just like all of us. Disabilities (in general) have far too many stereotypes. People don’t understand. Therefore, this different life that we lead must be filled with heartache, sadness and grieving the child I thought I would have. In honor of World Down Syndrome Day, I would like to set the record straight. Our life is anything but sad. It’s busy and some days are crazier than ever- but I still wouldn’t trade my sweet boy for anything. Would he have the same sweet laugh without that extra chromosome? Would he make silly animal noises without that extra chromosome? Would he be the smart little boy who tries to use his cute smile to get out of working during his therapies? The truth is that I don’t want to know what he’d be like without an extra chromosome because he wouldn’t be Austin!

He was fearfully and wonderfully made. The traits of Down syndrome that some see as “imperfect” are beautiful to those who love him. Most of all, they are beautiful to his Lord and Savior. We get a lot of “second glances” while out in public. Most of our encounters with other people are pleasant, but there’s always the occasional not so pleasant encounter. You know, those dreadful looks of pity or even sadness.  If they only knew…I don’t need pity or sadness. In fact, I feel sorry for those who are so misinformed and uneducated. Our life is much more “normal” than you would ever guess.  Most of all, we are so thankful to God for making Austin extra special.  I’m not really sure that HE is the one who faces more challenges in this world...perhaps it’s those around him who are misinformed? Get informed! Educate yourself!

Happy World Down Syndrome day to all of our friends with an extra chromosome. We are so blessed to have such an amazing group of friends brought together all in the name of that sweet chromosome.

Austin's 2!

Austin turned 2 on Friday. My sweet boy had a big birthday bash at The Ark (part of First Baptist Church in Coppell).

This was taken at Austin's Birthday lunch with Nana and Mommy :)

I saved the best for last:

WE HAVE A WALKER!

 

Where have we been?

Life has been crazier and busier than usual lately. I feel like I say that all the time, but what can you do? The truth is boring.

It's hard to believe that Austin will be 2 in 10 days! Where has the time gone?

Austin has been dealing with chronic sinus infections since the end of October. We should probably have our own room at Dr. C’s office because it has been like a second home over the past 2 months. We’ve seen the ENT and visited the allergist today. They performed the skin test on Austin. I was hoping this would give us answers AND A SOLUTION. It’s a good thing I didn’t hold my breath because the results of the allergy testing left me with more questions than answers. The allergist is the second doctor to tell me, “Sorry, there’s nothing we can do.” (The first was the ENT)  Unfortunately, there’s just not a lot they can do (as far as testing) with younger children. Austin tested positive for allergies to the following:

Trees (Cedar, Mesquite and Red Oak)

Grasses (Meadow Fescue, Timothy)

Weeds (Dandelion, Ragweed)

Miscellaneous (Dogs, Cats)

Apparently, even though Austin tested positive for these allergies (particularly dogs/cats) it really doesn’t “mean anything in everyday life.”  The allergist said there’s no reason to avoid dogs/cats. This makes me feel good because Austin LOVES our dog, Cagle and vice versa. All of the positive allergies are mild, according to the scale- except for Cedar. Austin has a moderate allergy to cedar.

What did we learn today? You can test positive for an allergy, but it doesn’t really mean anything.

Ugh. And don’t even get me started on what we were told about his RED cheeks. The allergist said he thinks Austin’s red cheeks will “go away” once he stops putting his fingers in his mouth because there’s acid in the mouth and he’s rubbing it on his cheeks. That is, hands down, the most ridiculous reason for a child having red cheeks that I’ve ever heard. Toddlers put their hands and EVERYTHING else in their mouth. It’s age appropriate. So, why don’t ALL toddlers have unexplained red cheeks? I have to stop now before my brain explodes.

Austin continues to amaze me, his father, family and all of his therapists. His mind is truly like a sponge…he holds on to everything he learns and sees. He’s using sign language (finally!). So far, we don’t have very many words, just “Mama” “Mom” “Dad” “DaDa” “Bubble” “No”. However, Austin comprehends A LOT of words/phrases. He follows directions (when he wants to.) If I ask him to bring me his shoes, book, toy or some other various object, he will. He does the motions to several songs. He puts his hands in the air for “up” and puts them down for “down.” He walks 50% of the time. His PT and OT have both had to write new goals for him.

Here are some pictures to catch you up:

A Video

While I was pregnant, I often tried to picture what it would be like when I was finally able to hold Austin. When I found out that there “might” be a chance that Austin could have Down syndrome, I wondered if I would even be able to hold Austin? Would I want to? Those thoughts seem completely irrational now, but at the time they were anything but that.

Now that I’m a mom, I know what that “instant love” is. I know that Austin could’ve been born with one eye and twelve toes and I’d never love him any less.  Until you become a parent, you’ll never understand this type of unconditional love.

Trisomy 18 is a genetic disorder. Sadly, there is a high mortality rate for children with Trisomy 18 before or shortly after birth. In other words, a child with Trisomy 18 will generally pass away a few hours after birth…or a few months or years. The lifespan for a child born with Trisomy 18 is usually very short. I can’t imagine only having Austin for a few months or years. I looked up different genetic disorders shortly after Austin was born. I came across a website that shared stories about Trisomy 18. It really put things into perspective for me. It reminded me of how blessed we are.

As most of you know, I’m NOT a political person. However, this video is about a Politician’s family/personal experience with Trisomy 18. Regardless of your political or religious affiliations…this video is worth viewing.  :)

Let's Play Catch Up

I’ll go ahead and state the obvious: I haven’t updated in over a month. This time of year is always busy. Not to mention, we’re really busy with a crazy schedule to begin with. Did I mention that Austin has had a sinus infection for OVER a month? My poor little guy just can’t seem to shake these sinus issues. While I love Fall/Winter time…I don’t love the yucky illnesses that seem to be more prevalent at this time of year.

We had a blessed Thanksgiving and Christmas. Austin enjoyed tearing into his presents…He skyped with Nana while opening presents. However, he was more interested in looking at Nana than opening his presents. He’s becoming more independent and opinionated each day…very toddler like;-)  He constantly amazes me; he’s so smart. I know I’m biased, but it’s the little things like: separating his pretzels from his crackers and making sure to give the dog the pretzels because they aren’t his favorite… he prefers the crackers. Mastering the shape sorter. Making the “vroom” sound when he’s playing with his cars.  Giving his baby doll a (pretend) bottle and patting her to sleep. Putting his phone to his ear…we are so blessed to have such an amazing little boy.

He’s WALKING more and more. He’s capable of walking, but he prefers to crawl…because crawling is what he’s most comfortable doing. Not to mention, he’s really fast.

We get a break from Therapy this week (they are closed for the holidays)…I must admit, it’s nice to have a little break and focus on just having fun with Austin. We go to the ENT later this week to see what’s going on with Austin’s sinuses.

Here’s a video of Austin walking…

And talking:

And here are some pictures to catch you up:

Austin and his best buddy, Grayson.

It was definitely time for our second haircut

 

The After Picture:

Skyping with Nana on Christmas Day!

Merry Christmas!