a difference i wasn’t expecting

i intended to write this post for Brady’s one month, but here we are two weeks later and our little bug is 6 weeks old and NINE pounds! whoop, whoop! it’s crazy to think Landon was only few ounces smaller than this when he was born…woah.

i’ll kick off this post with all things medical for Brady. i have been getting a lot of questions about his appointments, so i figure i’ll clear that up and then move on into what has been on my mind and heart.

medical updates – Brady continues to do well with eating and gaining weight. his main specialist we see is his cardiologist to monitor his heart, breathing, and weight gain. surgery is still on the horizon, but as long as he is doing well, we will push it out as long as possible. that could mean 4-6 months, 9 months, 1 year, etc… this definitely drives my “planner” side a bit insane! the plan is no plan as of yet.

we are on a “typical” schedule with his pediatrician at this point. next appointment will be when he is 2 months. we graduated from heavy monitoring for now. we also are able to feed on demand at night, which means we are going 5 and 6 hour stretches now and feeling a little more human.

yesterday, Brady had an appointment with the director or the Emory Down syndrome clinic. it just so happens that the doctor is also the director of the new X and Y Chromosome clinic (side note: of all their patients, they have only one other little boy with both Klinefelters and Down syndrome). after her initial examination, we have been referred out to ENT, ophthalmology and swallow study. i had a feeling we were in a little calm before the storm.

we have our evaluation next week with Babies Can’t Wait and we will see which therapies Brady qualifies for. initially, we anticipate PT once per month, but depending on swallow study results, we could be seeing OT and feeding therapy more often. PHEW.

now on to what is really on my heart. it’s something that i had feared during my pregnancy, but never anticipated would be so different.

who does Brady look like?

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with Landon, there was an overwhelming response of friends and family saying “he is a mini-Mike” or “he looks just like you!” or “i see so much of your family in him!” with Brady, there was hardly any of that.

our families, of course, made these comments and compared similarities between Brady’s features and our families/Landon. but from other friends? i can probably count on one hand the number of people who mentioned which one of us they think he looks like. when i think about that for too long, i get sad.

when i look at Brady, i don’t see Down syndrome. i know i am his mom and i am blinded by his adorableness and my love for him, but this was also something i feared while pregnant. will i look at him and only see Down syndrome? will i be able to see beyond his diagnosis?

it’s silly to me, now. so i do understand why it might not be as easy for others to see or talk about or feel comfortable mentioning to us. that is okay. i am here to educate, enlighten, and hopefully ease the discomfort so that your next interaction with someone in similar shoes as us might be easier.

here is what i can tell you about this topic: babies with Down syndrome do have some distinct facial features like almond-shaped eyes and a slightly flatter nose. however, babies with Down syndrome look more like their family member than they resemble one another. Brady WILL look like our family/his siblings. good thing i don’t have to worry about him inheriting a full blown DiLegge nose! HA!

if you need a little help seeing it, i encourage you to follow a few other mommas and kiddos on Instagram:

you will see just how much the little ones look like their mommas and dadas.

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photos curtesy of Perfectly Bliss Photography

 

 

3 thoughts on “a difference i wasn’t expecting

  1. When I see Brady and Landon I truly see God. I feel the excitement and promise of who God created them to be. Each has a purpose in this life, and I feel blessed to have whatever time God gives me on this earth, to watch these amazingly beautiful boys grow in faith, love, and hope. They will be guided by two incredible parents who have shown and will continue to show them how to reach their potential. Pray for the patience, wisdom and courage to let them grow for God’s purpose in this life. As parents we may “want” for them, but ultimately they have been created for His purpose. There is no doubt in my mind that your guidance will bring them toward their purpose. Love you all. Had tears reading your blog. You expressed beautifully your heart.

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  2. Just found your blog. Thank you for sharing your journey.
    We just welcomed baby #3 to our family on March 2 and learned he has an extra chromosome as well. 🙂

    I had the same fear about family resemblance…
    what’s interesting is that so many people didn’t know the diagnosis initially so they only saw the resemblance to our family.

    I HAD to comment because your sweet little Brady totally looks like your family!

    Blessings to your family. Maybe I’ll make the time for a blog someday!

    Anna Davenport

    Like

    1. Hi Anna! Thank you so much for reading and following along. I appreciate the kind words too! Congratulations on your sweet baby boy! Isn’t it pure sweetness with these little dudes? Thinking of you during this time!

      Like

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