My {6} Month Old with Down Syndrome

Six months.    Half of a year.

What a milestone & its all going way too fast!

img_1980
These pictures are getting increasingly more difficult to take… *eyeroll*

On this day, February 13th of last year, we announced our pregnancy. Now, we have this little monster. There was no preparing us for what was to come ❤

This girl is changing right before my eyes. Watching her grow is very bittersweet & I try to soak in every last little bit of it. One thing that helps me cope is her petiteness! Her tiny features allow me to squeeze her into the cutest of outfits for a longer period of time. She is still wearing 3-month clothing!

She is currently weighing in at 13.4 lbs and measuring 24 inches.

We have lots of goals as we venture into the second part of her first year. Feeding/Speech Development is our #1 focus. We still battle latch issues, tongue thrusts, and weakness in her upper body, but we are working   c o n s t a n t l y    to get her big and strong. We are also working on rolling over (since that skill got pushed to the back burner, whoops!) and getting her to grab her feet. Right now, she just likes to rub those tootsies together and watch them move 🙂 Once we get her to interact with them, we’ll be one step closer to sitting up.

Kara, however, has some goals of her own. For starters, she has almost mastered sucking both thumbs at one time. She is also pretty adamant about sucking her thumb at the same time as her bottle. Although we don’t encourage it, its hard not to laugh!

Her hands are EVERYWHERE these days!

…On the top of her head, playing with her super cool mohawk.

…Touching every page of her bedtime story.

…All over her bottle, getting so close to holding it on her own.

…Entangled in the pups’ soft fur when they come near (they will learn their lesson in due time).

…Running her palms over our cheeks as we come in close for warm, squishy, kisses.

I love to see her learn and explore with each new day. It shows me how smart & motivated she is.

1b9d7056-6244-4464-b3ab-07143f661719

Her personality is so bold, it’s hard to understand how it all fits in such a tiny body! I feel like she has complete control of everyone around her. One minute we are going out of our minds as she throws a tantrum. Oh, how strong those lungs have grown! The next moment, she is fast asleep in our arms and we wonder how we ever got so lucky. She has us wrapped around her stubby little finger.

She is always my favorite, no matter what mood she is in.

Just the other day she was sitting in her swing. I was cleaning the kitchen and she was kicking her little legs in protest. She hollered. She cried. She let out a defiant YELL. Then she squinted her eyes, stuck out her bottom lip and out came the most pathetic whimper. I walked straight up to her and said in a teasing tone,

 “You don’t scare me…I know you’re not sad!”

Her big, blue eyes looked up to meet mine and the corners of her mouth pulled upwards. Next thing I knew, she had tucked her chin into her shoulders and was giggling behind her fists. The dishes could wait… I picked up my little monster and tickled her on her shoulder blades until she was cracking up. How could I resist?!

6abd4ca6-2dac-4b57-9033-96663a95103f

Her laugh is infectious. She didn’t hold back this month and I can’t get enough! The more engaged she is and the more excitement you show, the bigger the giggle! It’s the brightest part of my day! I was scared that once she was no longer attached to my body we would be less of a unit, but she is such a beautiful part of me. The best part of me. I have never known someone as deeply as I know her. I don’t claim to have all the answers and I certainly don’t do everything right, but I feel so confident when my baby girl needs me. It is the best sensation.

She definitely needed her parents this week. This past week was one of the busiest we’ve ever had. We had her eye exam, cardiologist appointment, first blood draw, and 6 month well-baby exam. We only attended therapy twice because of a cold she had caught (and is finally starting to overcome now that she passed it to me). So in what free time we did have, we cleaned a lot of noses, took a lot of steam showers, and snuggled during frequent naps.

We kicked off the string of appointments with her [EYE EXAM]. It began with the dilating of her eyes. She did surprisingly well with the drops! The hard part was keeping her occupied for the 30 minutes it took for them to work. Once the actual exam started, the doctor used a flashy toy to distract her while she peeked under Kara’s eyelids. She found that Kara has an astigmatism. One that is more prominent than she usually sees at this age, but not to where Kara needs glasses right now. She also mentioned that her left eyelid droops about 2cm below her right, but it is not affecting her vision at this point. People with Down syndrome are at a greater risk for vision loss so we will go back in a few months to reassess. Until then we are crossing our fingers that these minor issues don’t worsen into major ones.

img_1297Later that week, we visited her [CARDIOLOGIST] for a second echo (You can read about the first one here.) I was scared that she wouldn’t cooperate, but it only took about 20 minutes this time and she did FANTASTIC! I watched her closely with a smile on my face, but my anxiety was through the roof. Waiting to hear back from the doctor took maybe 15 minutes, but it felt like a lifetime and I couldn’t help but think back to when we were told about her heart defect… the words open heart surgery still haunting me.

This time around, the doctor didn’t have anything new to tell us, which is GREAT! No news is good news! Her AVSD is still considered a partial defect because it “doesn’t have all the components of a full AVSD.” There is a small amount of leakage between one of her valves, but nothing that causes her to have any symptoms. As a matter of fact, the cardiologist said she was impressed with Baby Girl’s pudge rolls 🙂

If you’ll recall, at her third and final fetal echocardiogram, they suspected a second, smaller hole between the bottom two chambers of her heart. This hole was confirmed after birth, but disregarded at her last echo (at 3 weeks old) because they didn’t see much of it anymore. Well, again, it popped up on the screen. Obviously, it is hard to detect, but it is officially there. It doesn’t change anything though. She still shouldn’t show any symptoms and therefore we can push surgery to 2-3 years of age. They will go in and patch everything up at one time. It was pretty overwhelming as far as emotions go, but we ended up with good news and walked out with our healthy baby!

img_1303
Tiny little tourniquet

Next up was the lab where we brought our squishy girl for her first [BLOOD DRAW]. It is routine for people with Down syndrome to have their thyroid levels checked once a year. I’d rather not re-live the experience so let’s just say that poor Kara had a rough go of it. We are glad that its done and over with. Upon walking in, I was surprised to find out that they draw blood from a baby the same way they do from adults. They placed a tourniquet around her arm and tried to find a vein. The problem was that her tiny veins were hard to find under all her pudge so we ended up doing a heel stick, it just took a while to come to that conclusion 😦

A few days later, we finished her cluster of appointments with her pediatrician for her [6-MONTH CHECKUP]. We heard that her TSH (thyroid stimulating hormone) levels came back perfectly normal and we chatted about our plans for solid food. Long story short, we have a beautiful, fat, healthy baby who is on the right track!

fd80c207-ce0a-41ca-92ef-94dc5f7b53c1
Sleeping Beauty

{MONTH SIX} brought so many firsts that I can hardly catch my breath! Some I knew would happen at some point, like the introduction to rice cereal or the misery of her first cold. Others I was not ready for, like her stranger anxiety that she developed over the past few weeks.

I have much to learn and I’m sure I will have plenty of opportunities to do so. I have no doubt that our sweet & sassy girl will continue to keep us on our toes and make us question our sanity, all the while making us wish that we could stop time.

3 thoughts on “My {6} Month Old with Down Syndrome

  1. I wish you continuous joy and enjoy all the love your beautiful sweet baby girl brings you. Every day will be a joy. You have bragging rights & you are a very strong happy loved family. Best to ya & never stop hugging
    Be well – call anytime
    ~robbie

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s