My {4} Month Old with Down Syndrome

Wasn’t it just yesterday that I was writing about my 3 month old? It’s just not fair.

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Though bittersweet, I love watching Kara grow and her personality develop. She impresses me on the daily and makes me go to the top of the highest social media “mountain” to declare my pride.

We are starting to get on more of a routine and it’s wonderful. She sleeps through the night (!!!), wakes up for her first bottle and then relaxes independently while I pump and get some work in.

Then she naps.    Then she eats.    Then she plays.

All the while, I’m rotating out wet diapers because she still will not sit in one. She is our little  P R I N C E S S!

She currently weighs 10lbs 10oz, measures 22 inches and is G R O W I N G like crazy! 

We’ve had a hectic, but very fun month. I was warned that the difference between a 3-month old baby and a 4-month old baby was significant, but there was no preparing me for just HOW different she would be! She has changed so much in so many ways. Every morning that I get her out of bed, she looks a little bit bigger. She has a little bit more hair on her head and we take one more step towards her goals.

I would give   a n y t h i n g   to slow it down.

My four month old sweetheart is trying to hold her bottle, loving to practice her sounds (especially “oo!”), is very motivated to hold her head up, and watches everything that moves. She is tons of fun and is definitely the life of the party 🙂

This past month, we were able to get in at The Down Syndrome Clinic at Children’s Mercy Hospital and it proved to be a great resource for us. We set one appointment and saw four different specialists: an Occupational Therapist, a Social Worker, a Dietitian, and a Pediatrician. We were able to cover all of our questions and walk away with some valuable advice.

After seeing the OT….

Our primary goal is to increase the strength in Kara’s neck and upper body (meaning tummy time, tummy time, and more tummy time.) We mainly need to strengthen the muscles she uses for feeding. Because of low muscle tone, she’s not getting a good latch on her bottle. Alongside her milk, she usually ends up vacuuming air in through the corners of her mouth (thus the bellyaches we’ve been dealing with). The OT agreed with the multiple strategies we’ve been using over the past couple of weeks to help her and I feel like we’re really making some headway!

Once we tackle the feeding and latch issues, holding her head up and reaching for her toys will come with greater ease. I have been told that “G.I. Rules“. If the G.I. tract isn’t functioning smoothly, it hogs all the focus and other things can fall to the wayside.

 

After seeing the Social Worker….

I was reminded once more about how lucky we are to be surrounded by the most amazing group of people. The social worker asked about our background and I got to brag about our support system and reflect on our journey. She was impressed with our preparedness, realism, and optimism. We are lucky to have Kara and there hasn’t been a single person in our family or circle of friends that hasn’t accepted her. This is not always the case and is something that would love to see change in my lifetime.

 

After seeing the Dietitian…. 

We found out that Kara is growing proportionately and is meeting her nutrition needs. When we visit her regular pediatrician, she usually falls in the 3rd-4th percentile for growth, but now we know that she falls in the 36th percentile on the Down syndrome growth chart! Such a difference and it all comes down to perspective! We plan to keep the momentum going. She needs to take 20-25 ounces of breast milk a day. We’ve been waking her towards the end of the night so she can squeeze in the last few ounces before snoozing the night away.

 

After seeing the Pediatrician….

We now have a better idea of what the next few years might look like with Kara, medically speaking. Down syndrome can mean a lot of things to different kids. There is an increased risk of many ailments and the pediatrician gave us a quick rundown of what to look for. She’ll have yearly screenings for thyroid dysfunction and iron deficiency anemia. They also recommend having a sleep study done by the age of 4 to rule out sleep apnea. We’ll keep an eye out for signs of leukemia and celiac disease because they are more prevalent in kids with DS. Next on the list is to meet with an Ophthalmologist and an Audiologist to double check her eyes and ears.


The resources that are available make all the difference in the world. I would encourage anyone who has a child with special needs to find them, ask questions, and join support groups. They say it takes a village to raise a child. Find those people and build that village. You are never alone ❤

3 thoughts on “My {4} Month Old with Down Syndrome

  1. Ohhhh, she’s so sweet! This is so so so Awesome!!!! You don’t know how much I am loving it, you penned it so amazingly….
    So many thoughts from this piece! Really felt the words, honestly wonderful, and it did melt my icy heart 🙂

    Like

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