Serena Faith’s Story

Site created on November 30, 2012

November 30, 2012


Welcome to our site!  We are so glad our baby is here safe and sound... thanx to all your prayers... we truly feel that they have played a big part in how well everything has turned out...

Serena Faith Schmidt was born October 12, 2012 at 11:37 P.M. weighing exactly 2 lbs.  She was 13" long.  She has 2  sisters:  Saylor Mackenzy, 8 yrs. old, and Nicoli Dawn, 6, and one brother, Isaiah Rainier, 3.  She was diagnosed with Down's Syndrome via amniosentesis a few weeks prior to birth, spending 3 months in NICU at Wesley Medical Center, Wichita, Kansas, before coming home shortly after her due date of January 3rd, 2013.

 

Newest Update

Journal entry by Marva Schmidt

Hi Friends... do you think I even know how to do a caringbridge entry anymore?!  I've got bumped recently about this, and so I'm going to just jot down a few things about Serena.  

She is going to be 11 on October 12.  This is really hard to believe!!  She is still quite short;  someone looking on might guess her to be 6 or 7.   She wears size 6-8 in clothes.  Her dietician wanted me to ask her endocrinologist about growth hormone pills awhile back, saying that her projected adult height (4' 10 or 11"?) would possibly not be practical to daily life skill tasks, kitchen cupboard heights etc.  So I asked Dr. Brown one day, and he said growth hormones don't really work on people with Down Syndrome... not gonna try and explain why because I would probably get all the medical jargon wrong anyway 😏  ... i didn't really mind that it was a closed door - would've felt like we were doing alterations on her!!

She still doesn't swallow any food, but loves to taste and play with it.  It usually ends up coming back out 😬.  Which can be a little awkward around others cuz of course its messy but we hate to prohibit eating.  But no, we're not hoping for a miracle anymore.  Pessimistic?? i don't know.

What we are SO grateful for is:  her increased vocalization!! Lots of people notice and comment on it, so that means she's talking not just in familiar surroundings anymore!  Tonite when I went to the tub to bath her, the rug was wet, and I said, "Serena, the floor is all wet!"   and she said "Sawry Mommy."  No holding grudges after that, right?!  and she was acting freaked about something outside or somewhere, and said to herself, "What wong?"  (whats wrong).  I couldn't even list all the words she says... she'll often copy us like a little parrot... Tonight she sang along with "happy birthday to you,"   same with "you are my sunshine".  She can fill in the blanks if i stop.  Its a lot of fun 😊 .

ALSO thankful for:  basically being potty trained! I thought this day might never come.  She does so good.  In fact, today we got our carpet cleaned, that's how optimistic we are being!! 😅😉.

Every morning she wakes up and first thing she does is form a tepee roof over her head (house) and says, "stay?".  And every morning, except Saturday, I say, "nope, today you get to go to school/church"!  what follows is a well-practiced bout of growling/grouching/whining until i remind her to be happy etc. etc.  She's usually okay after that, and runs happily from the door to the schoolbus, which pulls up around 7:25 each day.  She gets off again at 3:35.  She is in grade 5, splitting her school time about 50/50 between the gen-ed 5th grade class and special ed/life skills classrooom.  She is learning to write her name, actually CAN write it, with a LOT of prompting and cajoling.  She can tell time (which number the little hand is pointing to) and can count to 10 independantly, verbally.  She can do a lot more than we think!  I'm sometimes amazed at what her teacher says she can all do!  She goes swimming at the Y every Monday - recently for the first time she picked up a sinker from the shallow end with her hands instead of feet.  Yay for Serena!
As she would say, "Go Cats!" (Moundridge Team, even tho she transferred to Mac 2 years ago already, she is still loyal to the Cats!!!)

One day I walked into her room, and she was wearing some veeeeery form-fitting clothes ... turns out she'd dug into a gift bag with a baby gift in it, a striped onesie, 0-3 months i think, and had managed to squeeze into it.  Or she'll fit on Jay's ironed Sunday shirt, or Isaiah's big farm boots.... pretty much anything to wear, she'll try it on.  Can totally dress herself and often does, on her own or if I tell her it's time to get ready for the day.  Sometimes I'm truly surprised at her sense of style!! And other times, dismayed 😒 😂 .

Sometimes she's very naughty.... a note came home from the teachers one day (after a too-short night) that she had "spit at the teacher 3 times."  Horrors!!! In the end i think it wasn't spitting ON them, just sticking her tongue out between her lips and blowing/bubbling type of thing... but still not nice!!! So good nights and not getting stressed out are very important behavior wise.  Which is probably true for all childen, but these kiddoes are so transparent!  She gets very upset over any conflict or loud voices, will go and hunker down, cover ears, start crying, etc.  Good incentive for a peaceful household.  LOL 😁 

Over all, we think she's doing great.  Doesn't love crowds, and noise, and functions where you are required to sit nice by your mom n dad and Eat Good Food, so sometimes one of us will stay home with her.  Hopefully some day she'll be okay with that sort of thing.  

One more tidbit... she will wonder fearlessly, quietly away.  We've lost her several times at church, (Lonetree is a big church, friends 😉)  One evening, she was riding the elevator, the other two times, right after Sunday School, someone found her looking over the balcony railing, and the other time she was sitting nicely on the back bench, waiting for me i guess.  You just never know.   We finally got an airtag to put on her zipper or clip on to her pony etc. in case she gets lost outside or something.  Sure helps our peace of mind! And she usually has to carry some security item with her.... for a long time it was a fly swatter, which was prohibited at school "because it was too distracting" and i didn't allow it at church... now its a long  African? wooden spoon thats been broken and reglued how many times.... She goes away with it and brings it to bed with her and carries it around the house.  

What else to write?  I guess if you have questions, feel free to ask, and Ill try to answer!

Or better yet, come visit us 😍 .  





 

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