Itsy Bitsy Teenie Weenie

Three months old!  This little girl is wiggling her way deeper into my heart every day.  She started smiling pretty regularly a couple of weeks ago, and I can’t get enough.  I’m constantly trying different ways to get that smile out of her, but I’m usually only successful about 50% of the time.  Most of the time I just end up annoying her and she yells at me.  She’s also become ridiculously obsessed with her hands.  She stares at them all the time while she opens and closes her tiny, little fingers.  You know what else she does with those itty bitty, adorable hands?  Grabs my hair.  All day long.  It’s just *forced smile* So. Cute. And. Painful.

Now excuse me while I step onto my soapbox.  Down syndrome is not something to be ashamed of or nervous to talk about.  I’ve noticed that people, for the most part, feel the need to avoid saying the words around me.  It makes them feel awkward.  It’s understandable.  I get it.  We’ve all been conditioned to feel wary of things that are different, and people with Down syndrome are just that: different.  But so are you.  So am I.  So is your uncle, your cousin, your best friend, your coworker, and that person in the car next to you.  Just because your brother has different colored hair than I do, it doesn’t mean I should be nervous to talk about him.  Just because my boss is anemic, it doesn’t mean I should be scared to ever bring it up in conversation.  And just because my daughter has Down syndrome, it doesn’t mean any of you should ever be afraid to talk about it.  If there is something you don’t understand or are curious about, speak up!  I would much rather somebody ask the questions they want to ask rather than stare blatantly at me or my baby, wondering what exactly it is that makes her different.  While people may think they are being polite by ignoring the fact, it’s really just hindering us all in our gradual acceptance of these beautiful, joyous human beings who have been diagnosed with Down syndrome.

When we first brought Avalynn home from the hospital, her bilirubin level was slightly elevated, so we had to take her to the pediatrician’s office every day for the first few days she was home.  We saw a different doctor at each appointment because we didn’t choose one ahead of time (partially my fault for waiting to do it, partially Avalynn’s fault for showing up early).  The first day, the doctor came in and asked the standard ‘get to know your patient’ questions, including: are there any health issues?  I replied, “No, she’s healthy, but she does have Down syndrome.”  The doctor nodded and continued to the next question.  Nothing else was said about it.  Second day: a different doctor came in.  Asked the standard questions.  “Any health issues?” I said no.  She began checking over the baby.  Then she hesitantly said, “Was she…umm…diagnosed…with anything at birth?”  I nodded and said, “Down syndrome.”  Relieved (probably because she was afraid she was going to have to give us “bad” news herself), she said, “Yeah I was gonna say, she’s got all the classic characteristics for it, but there wasn’t a note in her file.”  (Now this is no reflection on the office as a whole, because I love them and overall our experience has been fantastic, but shouldn’t that be a pretty prevalent note to put in a patient’s file?  While yes, I would like her to be treated normally in the grand scheme of things, when it comes to health issues, she’s kinda got a red flag attached to her.)  The doctor said nothing else about it for the rest of the visit.  Third day, another doctor: he came in, began by telling us we had a beautiful baby, and proceeded to go over the different health issues babies with Down syndrome typically have, just to make sure they’d been ruled out.  He told us that the old Alabama football coach, Gene Stallings, had a son with Down syndrome, and he wrote a book about it that we should consider reading.  He recommended a couple of support and resource groups and made sure we were scheduled to visit the Down syndrome clinic at some point.  This is the doctor we chose to continue seeing.  He made sure we were aware of the health issues that could occur, he provided extra information that could help us in our journey, and he wasn’t afraid to say the words “Down syndrome.”  But he treats Avalynn with the same care he would with any other patient, which is exactly what she deserves.

If you haven’t noticed, Avalynn is still quite small.  I PROMISE I feed this kid all the time and she is healthy, but she hasn’t been gaining weight as quickly as she should be.  She is breastfed (this word makes several of my male coworkers feel awkward.  Must be because it’s related to milk and they’re lactose intolerant), so I met with a lactation consultant to see what could be done to help with the weight gain process.  She thought that Avalynn’s jaw muscles could use some strengthening to prevent her from burning too many calories while eating, so she referred us to a chiropractor.  Yep.  You read that right.  She wanted me to take my three month old baby to a chiropractor.  I had never heard of such a thing.  But it turns out Avalynn also has torticollis (her neck muscles contract and make her turn her head mainly to one side.  You ever sleep weird and wake up with a crick in your neck? Imagine how scrunched up she must have been in utero for nine months.  That’s one big crick.).   So after doing a bit of research and talking to a friend’s chiropractor hubby, off we headed to the chiropractor.  And ya’ll, I loved this place.  When we arrived, the nicest lady took us back to the room (after telling me how beautiful my baby was.  That always earns brownie points), took Avalynn from me and placed her on a contoured pillow sitting on the table  As she explained everything she was doing, she placed her hands on Avalynn’s neck and gently started adjusting.  When I say gently, I mean I couldn’t even tell she was doing anything, but at the end, it was obvious that Ava was holding her head straighter.  Like magic.  I had mentioned earlier in the visit that she normally ate around that time, and when she was finished, the chiropractor offered to let me feed Ava in their relaxation room.  So down the hall I went to a room with massage chairs looking out over the water.  The chiropractor showed me how to use the chair, dimmed the lights, put a sign on the door, and told me to take my time.  I.  LOVE.  THIS.  PLACE.  A couple more visits and Avalynn should be good as new.

This little nugget has brought so much joy to our little family.  Even when she cries just to be held or manages to get poop on my face.  Even when she insists we constantly walk around with her or refuses to wake up to eat which results in me being late to work.  We’re soaking up every wonderful moment of having her in our lives.  While I want her to start gaining more weight and getting bigger, I love these days of her being itty bitty.

photo-nov-23-3-41-43-pm

 

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