I'll Take Three

I would never claim to be a poet because I’m certainly not. This is merely something that came from my heart.


I'll Take Three

Who would you be without those three?
Before you were born I was scared.
They told me there was a 2% chance you could have Down syndrome.
Surely God wouldn’t pick me.
There’s no way I could be a mother to a child with three.

I prayed for you to be healthy and you were.
I asked the doctors and nurses if you looked like you had an extra chromosome.
None of them knew for sure.
When you opened those beautiful eyes and looked into mine I just knew.
You indeed had three and not two.

I cried for me.
I cried for your daddy.
I cried for your grandparents too.
Most of all, I cried for you.
I told God I didn’t understand.

My tears were soon replaced with an unimaginable new love.
Your almond shaped eyes twinkle at almost everyone you see.
I often stare at you as you sleep.
Sometimes I still can’t believe God gave you to me.
Who would have thought I would be so thankful for those three?

You have so much ahead of you and I cannot wait to see who you will be.
You might not grow up to be a doctor, but you your sweet soul is healing.
You might not grow up to be a dentist, but your smile lights up my world.
Do not mind what others say.
You continue to prove them wrong day after day.

We are incredibly thankful to God for making you extra special.
If God were to say, “I’ll give him two and not three.”
I would smile and say, “No thank you, not for me.”
We wouldn't change anything about you,not even for a day.
Who’s to say two is better than three anyway?

All American Boy

Summer is officially here and while there are some beautiful days ahead, I’m not a fan of actually being out in the heat. Texas summers can be pretty rough. Thank God for air conditioning and the automatic start on my car to cool it off before I enter it.

Austin was pretty sick with stomach issues, but he seems to be doing better. He’s on baby Prevacid for acid reflux and it seems to be working wonderfully. Speaking of the little man, he turned 4 months old last week. Wow! 4 months. He’s always had quite the personality, but it’s cool to see new developments personality wise as he gets older. I never thought I could love something so much. He is truly my greatest blessing from God.



I’m reminded when I see babies close in age to Austin that he’s different. I hope this is a normal reaction. It’s not that I’m comparing my child to others, but rather I’m just reminded when I see “typical” children that he’s different. 4 months ago I didn’t expect to embrace his Down syndrome. I was still questioning God and telling him, “I’m too young for this. I don’t know if I can raise a child with special needs.” God answered me in a unique way. He gave me the strength and confidence to JUST DO IT. Babies with Down syndrome aren’t any different than other babies. Yes, they’re at risk for more health problems, but they need the same things other babies need.

I’m going to begin getting a team together for the Buddy Walk in November. Obviously, Austin won’t be walking this year. However, Mommy, Daddy and whomever else will be walking. Austin will get to “stroll.” I have several ideas on raising money and acquiring donations. I’m excited to put my ideas to work.



I hope all of you have a wonderful 4th of July. Austin is going to see fireworks and I cannot wait to see his reaction. Hopefully he’ll be intrigued, but when it comes to babies you never know. ;-)

Be safe this 4th of July weekend!

Blessings,
K

Roll Over, baby!

We went to Babies “R” Us this morning to purchase a Bumbo chair for Austin. It seems like almost everyone has one and it appears they have the potential to be beneficial. We shall see ;-) We bought the little tray that attaches to the chair, as well. Austin LOVES to sit up. In fact, he prefers to stand (with our assistance, of course.) He doesn’t like to be cradled when he’s held. Nope. He likes to be over your shoulder and “up” where he can see everything around him.

We hadn’t worked on tummy time for over a week because he was sick. My poor little guy. He’s been feeling better, so I decided to resume tummy time. I couldn’t believe my eyes as I watched my son ROLL OVER from his tummy to his back. I thought for sure this was one of those “one time” occurrences… and that he wouldn’t do it again. I was wrong. He did it again and again and again. I was even able to capture this blessed event on video.



I’m so proud of my sweet boy! He’s strong and determined. He has been like this since day one. Each accomplishment gives my heart more joy than you could ever imagine. Each accomplishment is so much more than a milestone to us. Austin is defying the odds. I was told to expect delays and don’t get me wrong, I know there will be delays. I’m not so much worried about WHEN Austin does something, because I know he will do it when he’s ready.

Austin’s doctor appointment with his Primary doctor went well. He’s improved a lot and isn’t running a fever anymore. She wasn’t too concerned about the cysts or fluid around his kidneys. She said she was going to refer us to a Neurosurgeon, just to be safe. She also mentioned that there is a very mild amount of fluid around Austin’s kidneys. She thinks it will resolve on its own. We will recheck the, when he’s 6 months old.

Thank you for your prayers and thoughts. I appreciate it more than you know!

I hope everyone has a lovely (Father’s day!) weekend.

Love,
K

Adventures in the ER

Austin’s extra chromosome brings us unimaginable love, joy and happiness. It’s not something we would ever wish to change; it’s part of him. We love every part of him and especially his extra chromosome. However, there are times when we get scared. The extra chromosome doesn’t just mean Austin will have physical characteristics of Down syndrome. It goes so much deeper than that. There can be severe health problems that come along with that precious chromosome. I try not to allow myself to think of the health problems that could arise due to that chromosome. Sometimes it’s impossible to ignore that something is wrong. That’s when my mind starts to wonder…could it be this? Could it be that? Children with Down syndrome are at a much higher risk for almost everything, or so it seems.

Austin got sick while we were on vacation visiting my parents. We took him to a Pediatrician in my hometown. The doctor there referred to Austin as a “Down’s baby.” I can’t even begin to tell you how much this statement irks me. First of all, he’s a baby. He loves his swing. He prefers to swaddled at night. Loud noises startle him. He seems to thoroughly enjoy hearing music from the television show, “Glee.” Oh yeah, and he has Down syndrome. You wouldn’t call a baby with Cerebral Palsy a “Cerebral Palsy baby”, would you? I just find it very unprofessional when doctors (of all people) use this type of slang. On the flip side, we are beyond blessed that we have an amazing pediatrician that does not define our son by his extra chromosome.

Okay, I will now step off my soapbox and continue with our journey of Doctor’s visits and an 8 ½ hour ER visit.

To make along story short, Austin has been screaming. All. Day. Long. That’s not an exaggeration. He’s in immense pain and I’ve never felt more helpless. I had the doctor’s office page Austin’s Pediatrician. She suggested we take him to the Children’s ER. He’s been to the doctor 3 times in the past week. His ear infection seems to be recovering, so I KNEW it was something else. I knew it was his stomach. The ER doctor ordered a brain ultrasound, belly ultrasound and belly x-ray, amongst other things. They found choroid plexus cysts on Austin’s brain. These cysts are generally found on perfectly healthy babies and babies with a genetic abnormality. They almost always “go away” on their own by the third trimester. Why does my son still have these on his brain? What do they mean? I received no answers from the ER doctor. Yes, I asked him. However, he didn’t acknowledge that I even spoke and simply said, “we’ll refer you to neurology.“ I’m feisty when it comes to my baby, but after being in the ER for over 8 hours…I was simply too tired to ask the doctor WHY he wasn’t answering my question. He wasn’t the most personable man, to say the least. If anything, he didn’t seem very concerned about the cysts…so obviously they weren’t a red flag or anything. Austin also has fluid around his kidneys. I believe the word was “dilated.” Both of these conditions would likely not cause excruciating pain. However, when they did the ultrasound on his belly we found the culprit. CONSTIPATION. His stomach is full of poop. This explains a lot. Severe constipation is common in children with Down syndrome.

Austin has an follow up appointment with Dr. C on Wednesday. She thinks it could also be Acid reflux…which also makes PERFECT sense. I think it’s a combination of everything. I’m sure she will be able to better explain the choroid plexus cysts. I’m VERY concerned about those. I could feel myself starting to lose it when they told me about the cysts. I know everything will be okay. I have faith, but the unknown is just so scary. Please keep Austin in your prayers. I just want him to feel better.

Test results are in

Ryan and I had Genetic testing a few weeks back to determine if we could be carriers for balanced translocation. Just as the Genetic doctor suspected, Ryan is a balanced 21;22 carrier. What does this mean? Basically, it means we have a 5% chance of having another child with Down syndrome. Unfortunately, this also means I’m at a greater risk for miscarriage when we do decide to have another child. Due to the increased risks, we will definitely pursue in vitro fertilization with our next pregnancy. I know it may seem crazy to even think about having another child right now. However, in vitro is more complex than simply “getting pregnant” on your own. Don’t get me wrong, this will be a few years down the road. It’s just something we’ll need to think about, research and plan out.

Austin and I are visiting my parents in the Hill Country right now, but I had to update on the results.I know some of you wanted to know:)

Have a great weekend!!