I realized today that I hadn’t updated y’all in two whole
months. I’m sorry for that. I know I’ve said it before… but in the world
of Miss Elizabeth Kate, no news is usually good news. It usually means that momma has some sort of
sanity and it usually means that bug is pretty healthy and doing well. This holds true. We’re wrapping up February – which in case
you don’t follow me on FB, is Congenital Heart Defect awareness month. At the beginning of the month I posted a
sweet picture of Ellie in her favorite tutu (because yes, of course she has
more than one). She’s showing off her
scars and sitting pretty with her heart pillows for her annual CHD Awareness
photo. I’m sure we’ll reach a point soon
enough where we’ll encourage her to wear a shirt for the picture, but for now…
shirtless toddlers are perfectly acceptable.
Here are a few more shots of other details that did not make it on
FB. Can you believe the difference from
last year at this time? I remember
thinking how amazing she looked last year… sheesh… I had no idea what healthy
looked like yet.
In just a few days Ellie will be 18 months old. When she had her 2nd heart surgery
in Boston, she was just a few days shy of 9 months old. That means that Ellie has now officially
lived just as many days (outside of my belly) with a whole heart as she lived
with a busted up mess of a heart. That’s
something to celebrate in and of itself.
That is rock solid awesome! And
just for the sake of celebrations, we’re sharing an up-close shot of her battle
scars (the ones on her chest, at least) to show you how beautifully they’ve
healed in the past nine months. Her
sternum is bowed out, yes. It will
always be this way… it’ll be more camouflaged as she gets more muscle mass and
(ahem) chest… but she will forever have a bowed sternum because she had what
they call a compliant chest wall during her first open heart surgery. The pressure in her chest cavity was so great
that when they cut through her sternum the first time, it bowed her sternum
outward and it healed that way. It
causes her no harm – so we’re not at all concerned with it. Beautiful, right?
Let’s see… what else is Ellie up to? In January, she was supposed to get admitted for a few days so that we could work on getting her weaned off of the ventilator while she slept and maybe put onto cool mist with oxygen or something. Her pulmonologist said that she doesn't seem to have trouble getting rid of CO2 while she sleeps, so he doesn't think she needs the pressure support of a ventilator. She's still struggling with sleep apnea, though, so she'll need oxygen support during sleep. So we're moving in that direction. However, when we packed up and went into clinic for our appointment, he said that the IMCU and PICU were overflowing with RSV cases and that RSV is especially nasty this year. He didn't want us anywhere near the critical care units and wanted us to stay away from "sick" areas of the hospital if we could. We can't chance exposing Elz to RSV. So instead of spending three or four days there weaning settings, he got us a spot in the sleep lab for the night and we made a tiny bit of progress weaning vent settings. One step in the right direction... not the big leap we were hoping to make... but we'll take one healthy tiny step over RSV any day. That's a no brainer. Here are so adorable pics of Ellie getting another sleep study. She's an old pro at these at this point.
At least they left her pig tails!
Therapy notes: A few weeks ago she learned to push herself
up from a side lying position up to a sitting position. This was met with incredible cheers from the
Mommy cheering section. I went
absolutely wild! I think I even scooped
her up and gave her all kinds of smooches on her cheeks when she did this. I know, I know… for all the other
17-month-olds out there, they’re doing all kinds of other things and sitting up
seems like something that should have happened like nine months ago, but this
is how things go for kiddos on modified development plans. When milestones take longer to reach, they’re
met with unbelievable fanfare, let me tell you.
About a week later, she discovered that she can lay in a prone position
on the ground (on her belly) and take her little legs and windmill them around
to both sides and push herself up to a sitting position. From a biomechanics standpoint, this makes me
cringe. She’s such a cheater!
I know this makes everyone think that she’d be really great
at gymnastics… the thing is, though, is that the reason she can do this is a
lack of muscle tone and extremely loose ligaments. Ellie has hypotonia (low muscle tone) which
makes it very hard for her to learn how to use her muscles. This was best described to me as using your
legs once they’ve fallen asleep. Not the
“pins and needles” painful part of it… more the cement/heavy feeling once your
leg falls asleep. You know how it’s hard
to move it and it’s hard to feel where it is in space? That’s how Ellie’s body feels to her all the
time. So she has to work much harder to
make the simple movements that we do easily.
That’s why sitting up takes 17 months to figure out instead of 5 or 6. That’s why she’s nowhere near standing on her
own yet. She’ll get there… but imagine
learning to do all of the things you know how to do with body parts that are “sleeping”
all the time… that’d be rough. The
second thing she’s constantly dealing with (which seems like awesome
flexibility) is extremely loose ligaments.
We can fold Ellie in half and there is no resistance. For real.
We do it, too… because it’s cute and fun. She gets tired and lays her head on the
carpet between her feet to take a nap.
She falls asleep in her stroller with her feet by her ears… it’s
weird. It cracks me up. Since Ellie doesn’t have the muscle tone to
support her joints, though, we have to be cautious with putting any force on
her joints. Before she built enough strength
in her shoulder joints, we weren’t able to lift her by her arms at all because
we could have easily dislocated her shoulders.
I’ve felt her wrists pop out of joint when putting shirts on her. Super loose joints. It’s just part of having Down syndrome… it
also makes Ellie really soft and squishy and we love it. We have to be a little more careful with how
we handle her… but it also makes her more resilient, too. I’d love to get her into some kind of
gymnastics or dance at some point, but she has a long way to go in
strengthening her muscles before she’ll be ready to take that on. She will always have enviable flexibility,
though, so we surely want to have her in a sport or activity where that
strength of hers can shine.
Yes, that's her foot... on her head... while she's sleeping
My goal for Elz is to have her crawling (real “belly off the
ground” crawling) at 18 months. So as of
today, I said, “Ellie… we have T minus 32 days for this crawling business,
Sweets”. I don’t want to say that I’m
pushy, but I’m pushy… in a nice way. I
know that she’s thiiiissss close to crawling and I really think that with lots
of effort on our part, we can help her meet this goal. I’ll keep you posted on that. She tolerates being on all fours well. She manages to get onto all fours for a few
seconds at a time on her own. She has
special therapy shorts that help her keep her knees together (instead of sprawling
out to either side) and these seem to help her get onto all fours on her
own. We’re working on it.
She’s learning sign language well – and the boys love
learning signs right along with her.
Right now, she is obsessed with shaking her head “no”. It’s not just a simple little shake back and
forth, it’s a big production that she has to brace her torso with her hands on
her knees for. She shakes it left and
right… maybe six or more times to each side.
She’s an absolute riot. You ask
her a question and it doesn’t matter what the answer should be, she’s already
made up her mind that she wants to say “no”.
And it’s so unbelievably adorable.
Have I mentioned how stubborn this little monster is yet? You have no idea! And she has personality for days. We love this about her.
Ornery much?
And just because I haven’t thrown enough random tangents
your way yet… there was one day… right around New Years… a day that really
struck me. We were having a therapy
session and our house was abuzz. We had
two therapists working with Ellie and Rae (her nurse) was helping out. The boys were out of school on break and were
trying to get as much attention as they could steal, too. And I was desperately trying to take it all
in. We were in discussion about what
Ellie was doing and how she was so unbelievably social (gets that one honestly)
when her therapist said something that stopped me in my tracks. “Ellie is so smart, you know that,
momma? She catches on to things so
quickly.” The whirlwind of that hour
continued and our household swirled around me, but in that moment, I was taken back
to the shell of a person that I was as I sat in my van in the parking lot of my
OB’s office with Brandon. We’d just
gotten our Ds diagnosis and I was certain that we were going to have this
little girl who was going to be wonderful… but who was going to be so limited
and was going to miss out on so much. In
my mind that day, I had put so many boundaries on what I thought her life would
be like. Never in that moment did I
imagine someone telling me that my little girl would be smart. Never did I imagine them saying that she was
a fast learner. Never did I imagine…
never did I imagine anything about my reality with Ellie. This little girl is amazing. She’s beautiful and smart… she’s full of
endless joy. She’s determined and has
sass and personality and she is very much her own little (social) person… just
like every other toddler I’ve ever met in my life. There’s this whole other side to life when
you are forced to take things a bit slower… when you’re waiting and waiting for
milestones to come instead of whizzing through them without stopping to
notice. This life… this life is rich
beyond measure… and that momma that wept in the van in the parking lot… I could
have never described this to her. The
days can be painful and stressful, but all of motherhood is that way. I wept in that parking lot because I was so
afraid of the unknown… and I’m still afraid – don’t think for a second that I’m
not. But from what I’ve seen so far, things
are going to work themselves out and this little ray of sunshine is going to
keep me on my toes and bring more joy to my tomorrows than I can possibly
imagine today. Bring on tomorrow, baby!
The boys were making a train out of her therapy things.
Kaleb was sad because he didn't want to be the caboose
Ellie's ready for summer... bring on the beach!
In January, Lance celebrated his 5th birthday! Brandon & I try to give our boys a night out with us a few days a month (while Ellie is home with a nurse). This night, Lance got to choose where to eat his birthday dinner. He made sure every person at BWs knew it was his birthday.
She got a tea set for Christmas. The boys have tea parties with her all the time.
They laugh at how she drinks her tea. She likes to make them laugh!
Kaleb likes to take care of babies. He's the sweetest. He cuddled this baby and showed me exactly how to hold her and pat her and told me, "Mom, she's crying... you're doing it wrong". My bad.
