Down syndrome at 9 1/2 months.

April 11th, 2011

Our baby girl is nine-and-a-half months old, and she has Down syndrome.

But what does that mean in real life?

Down syndrome makes her different.

But what difference does it really make right now?

Hmmmmm, let’s see.

I’m giving her bottles of breast milk thickened with guar gum instead of nursing her, until her chest congestion clears up.  (I do occasionally nurse her, just so she doesn’t forget how!)  Over the past few days, she has continued to be slightly dehydrated and have very little appetite, to the point that she begins fighting the bottle after a few sips.  We’re not sure whether this is the fault of Verity or her Down syndrome, but what matters most right now is that she gets what she needs!

The low muscle tone that comes with her Down syndrome means that she needs prune or pear puree or prune juice on a regular basis.  I still give her supplements on most days as I did months ago, but now I mix the vitamin powder into her fruit purees.

Down syndrome means that her long bones (upper arm and thigh bones) are a little short.  This makes her torso look proportionately longer.  In practical terms right now, this means that she has to lean over further to touch the floor when she is sitting!  We especially notice this when she is working on transitioning from sitting to tummy and from tummy to sitting, and think it looks very cute!

Her body design also means that I’m learning what kind of clothes suit her best as she grows out of the infant stage.  I choose her clothing by how it fits her and not by the size on the label.  I make sure that it does not restrict her ability to move about freely.   The shirts that snap underneath are always worn with a sweater, overdress, or blouse to disguise the little round belly caused by her low muscle tone.  The shirts that don’t snap underneath are the ones she wears alone.  Some 2T and 3T A-line shirts stand in nicely as overdresses.  Because of her short arms and comparatively long torso, if a long-sleeved shirt fits well enough to snap under her diaper or be comfortable around her middle, the sleeves are invariably too long and need to be turned up.  Her short legs and round belly mean that she can wear short skirts in a size 2T, because they aren’t too short or loose on her!  Also, short legs mean that she can still wear the tights and leggings that fit her six or seven months ago.  Verity’s unique design gives her extra dumpling appeal in our eyes!

Please pardon my red eyes and nose.  I have a little cold, you see!

 

Mama thought this was a bright idea until I put it in my mouth…

 

Where did my flower go?  Okay, I’ll find something else to put in there…

 

I will work my oro-facial muscles!  (This is good for me and makes my mama happy!)

Hey!  Mama!  Where did you go?

Down syndrome means that during most of Verity’s waking hours, when I am not playing baby dolly and she is not in public, she wears something like these hip helpers to keep her legs from “frogging” outward.  “Frogging” is also known as hip abduction.  This should help her as she learns to move her limbs properly.

Down syndrome means that Verity’s upper airways are smaller than usual.   Her ear canals are also tiny.  Her low muscle tone affects all the muscles in her body, including the stomach muscles that would otherwise help her to cough effectively.  All this means that she is more prone to respiratory problems that can turn bad quickly, and more prone to ear infections.  We must be extra vigilant and cautious when she catches a cold.  We are thankful that in all these months, her recent sickness was the first time she has been sick enough to have a fever.

You may wonder if we can tell that Verity has cognitive delays, and what that looks like.  Right now, Verity’s Down syndrome means that her response time can be slower, so she needs a bit more time and patience from us.  It also means that her attention wanders easily, so she needs us to work a little harder to get her full attention and keep her focused.  But she impresses us with her excellent memory!  She also has a charming sense of humor when she is not sick or sleepy, and when we tell her baby jokes, she laughs at all the right places!

Her Down syndrome means that we intervene when we see her tongue come out.  We don’t use the same strategy we did a few months ago, but we have a few others that help.  One is to offer her something to chew on.  Another is to squeeze firmly on her cheeks a few times.  Sometimes I nudge upward on her chin.  If we get her attention and talk with her, she will pull her tongue in and answer us.  Sometimes the most needed intervention is a nap, because we do see her tongue more often when she is sleepy!

Down syndrome at nine-and-a-half months means that the sharp emotions I wrestled through during her first few weeks and months have smoothed out long ago.  If strangers give her attention, and mention her Down syndrome, it doesn’t feel like a stab in my heart that they noticed.  I still do not like others to see her with her tongue hanging out, because of the stigma attached to that particular pose.  I would like for others to see what we see when we look at her through eyes of love!  But now I don’t wonder or care if they are pitying me or think my baby isn’t pretty.  If someone is obviously uncomfortable around her, I think, “They truly do not know what they are missing!”

One of the best things about Verity’s Down syndrome right now?  Although I find a few more silver hairs among the brown every week, and am regularly reminded that I will turn forty next year, I won’t run out of cuddly baby for a long time to come.  Verity’s low muscle tone makes her sweetly squishy-soft!

Do I ever forget Verity has Down syndrome?  No.  Sometimes it shows on her face less.  Sometimes it shows more, especially when she is waking up or going to sleep.  Other moms have said that they forget, but so far, I am still constantly aware of it.

Ver-i-teeeeeeee…time to wake up, sweetie-pie…

Huh?  Where am I?

Oh!  It’s Mama!

 

I am happy to see Mama!

 

Looks like Mama is playing with the camera instead of picking me up!

 

Did you find your feet, Verity?  I see your little baby feet!

 

And in our daily life right now, Down syndrome causes less trouble than I thought it would.  We all feel privileged to be in this Down syndrome club!

Down syndrome is a part of who Verity is.  It is just part of our lives now, like Verity herself.  We can’t always explain where Down syndrome leaves off and Verity picks up.  But it doesn’t seem to matter in most of our day-to-day life.

I can see now that what I thought was my acceptance was my determination to accept.  Thorough emotional acceptance came later, in one significant moment on one significant night.

God has given us the life assignment of Down syndrome, and we haven’t looked back.

Sweet baby!  I love you, too!

 

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7 Responses to “Down syndrome at 9 1/2 months.”

  1. Joy says:

    I canNOT wait to meet this little sweetie pie!!

  2. Tami Swaim says:

    One thing you mentioned here struck a chord with me.  It was your comments about Verity in public.  Typically during our day to day life I rarely think about Joel’s autism.  He’s high functioning and that’s partly why.  But there is a time when I do think of it and that’s when we are out; especially with a group of children.  I will always notice when children stare at Joel was he gets excited and flails his arms out in front of him and flexes his hands and says in a gutteral tone, eeeeeee…..  I want to tell the children that he is doing this because he is actually happy about their presence and the activities going on. I also want to shelter Joel from their stares and lack of understanding and acceptance.  Also, inevitably at some point he will seem as though he’s going into his own world bobbing his head, making odd noises and flapping his hands.  I want to explain that he’s feeling some sort of bodily sensation stronger than what typical people feel and this is how he responds to it.  For him it’s “normal”…it’s what he does…a Joel thing.  It’s challenging because at home you are all just so fully accepting of all the unique ways that Joel is Joel.  In fact, all of the children have their own unique special ways.

  3. Anna T says:

    : )  I wanted to make a comment about Verity’s tongue just in case you haven’t heard it yet.  She will use her tongue to help “balance” herself when she is learning a new gross motor skill (crawling, pulling-up, etc…).  If she is on her back relaxing and her tongue is out, it’s a good idea to get her to put it back in.  If she’s working on something “gross motor”, let her use it to help balance as she’s learning the new skill (and after she learns it, her tongue should go back in — yea!!)!!  Jacob’s Speech Therapist told me this tibit of information and it was very useful.  I hope that Verity is feeling better really soon!!  Blessings and prayers for you!!  Yes, I agree, why was I ever sad??  Jacob brings so much JOY to our lives!!  I also feel priviledged to be a part of this club, I’ve met people that I would have never met and have been given the gift of perspective… 

  4. Susanna says:

    Thank you so much, Anna, that is so interesting to learn! I was just thinking about Jacob recently and realizing that Verity is now older than he was when you came to see her after her OHS! Wow!

  5. Anna T says:

    Thanks Susanna!!  It was perfect timing to visit you as he was content to be held, sleep and be his adorable self.  He is now ALL OVER THE PLACE (and of course still adorable)!!  He commando crawls, or sort of scoots on his bottom over to me to be held, I pick him up for (usually) one minute and then he wants back down to continue to explore — I LOVE IT!!  My 2nd DD added your Katerina to her prayer list this evening and when I told her that she is 10 she was dismayed, “She’s been waiting THAT LONG to be adopted mom?”.  I asked her to pray specifically that the adoption goes smoothly and that she can come home with you soon…  Prayers for you and your sweet family. 

  6. Mama Mirage says:

    She is absolutely precious! She’s just radiating joy! What a little blessing. :)

  7. zubaida gulshan says:

    i have a baby girl with down syndrome. she s now 9 1/2months old but she is not sitting herself yet. please inform me how can i make my child sit properly.

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