Go Jesus, It’s your birthday! And if we’re ever to be thankful and mindful
of just one person… it’s you. There are
scars on this ragged heart of mine… and you know fully what each of those looks
like. Scars from my younger years… scars
from my dating years… scars from my married life… and scars from
motherhood. You wept along with me and
felt the depths of my pain. When I was
beyond hope and in pain that I couldn’t shoulder myself, you shouldered that burden
for me. Not that I wish immense pain on
anyone, but I can tell you that the songs of Sunday school are true and you know this truth when it is all you have left. When I sang “I have a joy, joy, joy, joy down
in my heart” and “I have a peace that passes understanding down in my heart” as
a child… I thought we were just being happy and working on our tongue
twisters. As an adult, I know that the
source of my joy is Him and I’ve felt those mighty arms wrap around me and
truly offer a peace that surpasses all understanding. A peace that come in a time when peace seems
impossible… a peace that covers me like a warm, weighted blanket and only
allows me to feel what I can bare.
When we had the boys and desperately wanted to add to our
brood, we prayed and prayed for another baby.
Months of negative pregnancy tests had me down in the dumps. [I know
many people have these for years… and I can’t begin to imagine that
heartache] On Christmas day four years
ago, I came walking down our hallway with my first positive pregnancy test with
Ellie. Brandon scooped me up in his arms and we cried and celebrated. Our Christmas miracle! A few days later, I’d hit the altar at church
and surrender this child over to the Almighty.
I knew that only He could control what was happening to this tiny blob
of a baby who I already loved so much. When
I’d look back on my journal entry from this week, I saw that the same week
where I was overwhelmed with emotion on that altar was the week that this
little baby’s heart would beat for the first time. I’m convinced that God had us waiting for
this baby until he knew that we were really ready for all that would come our
way. And that heartbeat… yep, he knew it
wouldn’t beat exactly as it should… and brought me to my knees to surrender the
situation to Him. When times seemed
uncertain, He’d be there to wrap those mighty arms around me again – as he had
through other tough times in my life.
When we were too weak to carry on, the prayer warriors for Team Ellie
Bug would allow Jesus to lift that yoke from our shoulders and carry the weight
that we couldn’t.
We thank our church family who has supported us and stood in the gap for us through the years. They've done fund raising for us, they've brought meals, they've prayed and pitched in to help with the boys. These folks hold us in prayers and visit us in the hospital. We are forever grateful for them today, too.
Today we celebrate a baby.
A baby that humbled himself and came down to earth to save us all. He paid an unfathomable price that gave us
hope for the future. He saved us. On his birthday 2,017 years later, we’re
still impacted each and every day by a man who walked this earth for a mere 33
years. He made all the difference in our
world and allows us to live and love and find joy in our busted up lives. This post is short because this is so simple
and powerful. Jesus saves… and today, we
remember and honor His miraculous birth.
As much as we like to make it about the gifts and the food and the egg
nog… I hope we each take some time to remember the true meaning of this day and
I hope we can all reflect on times in our lives when we felt His presence. Almighty God, King of Kings, The Great
Physician… Jesus our Savior… Merry Christmas!
I am ending this post with the heaviest of hearts and asking for you to lift another family in prayer. While you are opening gifts with your family, a family near and dear to us will be coping with the loss of their daughter. Our two littles lost one of their best friends today... parents who have been fighting the good fight for five years are laying their weary heads down this evening knowing that their little girl is in the arms of Jesus. My heart is completely shattered for them. Please lift my friends in constant prayer. I will miss the laughter and sweet hugs of their little girl. She's touched so many lives and will never be forgotten. Fly high sweet girl. We love you. Jesus... hold her in your arms tonight and blanket her friends and family with your peace. With broken hearts, we rest in your everlasting love.
Yes, I’m cheating… yes, I’m combining two days into one
post. Shut it… this season is crazy, y’all! And while these two shout-outs don’t really
go together at all, they both have acronyms and that’s good enough for me this
morning. Ha!
SHECC
As I prepared to send my kiddos out earlier this week for
their last day of school this year (meaning 2017, silly), I was inclined to
make a post about how crazy thankful I am to have the school and staff that we
have. We started sending the boys to
Shelby Hills Early Childhood Center (SHECC) before Ellie’s first birthday. Our thoughts were that they’d be in
classrooms with friends of all ability levels and they’d see kids with tubes
and nurses and all that jazz and it’d normalize all that they were experiencing
at home. What I didn’t know was that
SHECC was an amazing preschool for both typical and non-typical kiddos. Our boys flourished that first year. Lance went on to Kindergarten, but Kaleb’s
now in his third year at SHECC. This
year, we also enrolled Kaleb in daycare at Wilma Valentine (which shares a
campus, by the way). We were trying to
get him used to a full day of school-like activity before he rolled into all
day Kindergarten next year. Again, I had
no idea how amazing their daycare program was, either. A few weeks in, Kaleb came home telling me
about a city in Italy that has boats for taxis… and then showed me the leaning
tower of Pisa that he made, too. Ummm…
awesome! He came home dressed like a
mariachi band member one day and when learning about China, came home asking to
eat with chopsticks (again) and requested that I buy ginger tea for him. From Egypt to China and Mexico to Italy, he
was learning all about places of the world and experiencing a bit of their
culture each morning before he went to preschool. AMAZING!!
For the boys, we have several SHECC staff members who deserve a special
shout out: Laura, Darlene (who had Lance
in preschool and are now Kaleb’s teachers), Naomi, Kim, and Stacy (Kaleb’s
first year teachers), Emma and April (Kaleb’s 2nd year teachers),
and Kim C., Kim F., Karen, Tonya, Zoe, Hannah, and Janice (the staff of Wilma
Valentine). Y’all are amazing and have
poured your love into our sweet boys over the years – thank you!
Family picture from the sensitive Santa event at SHECC
This year is Ellie’s first year at SHECC, but other than
loading her on a big yellow bus that first day, this has been an incredibly
smooth transition (and the bus was only difficult because I wasn’t ready for
her to go). When we started the
transition to preschool, Ellie was evaluated by folks she’s been working with
for years. The developmental specialist
was someone we met before Ellie was born.
Once she transitioned, she’d still see her PT and OT that she’s so familiar
with and had only slight hesitation accepting the rest of her new staff. When we went to open house (which was only
overwhelming for me), Ellie met her teacher (who I’d known for several years)
and her para (who spoke fluent sign language with Ellie). Everything about SHECC feels like home to
us. A venture we took on for ulterior
motives turned out to be one of our best parenting decisions we’ve ever
made. Who knew?
As a shout out to staff for Ellie, she has Ashley
(Developmental Specialist), Andrea & Molly (PT folks for Early
Intervention)… Andrea is still Ellie’s PT in preschool and Jenna is her PTA,
Kendra & Joanna (OT folks)… Kendra was Ellie’s OT during Early Intervention
and is still there through school with Joanna, and Alison & Maria… Alison
was our Speech Therapist in Early Intervention, Maria is Ellie’s new ST. This is in addition to her teacher, Hayley,
and her para, Beth. The director of the
preschool program, Kathy, is also involved in Ellie’s care, as well as nurse
Deb. I’m sure there are others who work
with her during her day that I’m missing here.
When Ellie boards that big bus each day, Tony is there to greet her (and
give treats to Tundra as he follows Ellie up the bus steps) and her bus aides
Mary H. & Brian. The transportation
director has also helped out many times, too, Mary R. We’ve also had folks from the other building
involved. Tania and Julie (SSAs) have
helped me with my billions of questions and are holding tight to roll into
other waivers when Ellie falls off the Home Care Waiver. Nancy worked with us to transition Ellie into
preschool and has answered many questions on the transition beyond preschool
for me, too. We also worked with Diane
for our ISFP (Individualized Family Service Plan) before we transitioned to an
IEP (Individualized Education Program) and also brought in the Superintendent of
our school district. Whew… if this
sounds exhausting… it kind of is at times.
But my goal in listing all of these folks is to give you a little peek
again at what it means when I say it really takes a community of people working
together to make our sanity possible. It’s
a community of people we never knew existed (I mean, we didn’t know all the
pieces that came together to make it work)… but we’re so very thankful to have
in place. Thank you, Shelby Hills, for
always exceeding our expectations and being a solid foundation for all of our
kiddos.
COHSC
When we came home from Cincinnati with Bug, we were met by a
medical supplier (DME – which stands for durable medical equipment, I believe). We’d already met the respiratory therapist
that came to our house that day because the DME had been out a few weeks before
to deliver most of our home equipment and do a home inspection. The two women who came to our house from that
company (Ashley and Monica) were wonderful.
They worked out of the local office and they were on hand to answer any
questions we had. The trouble with our
first DME, however, came when we’d order supplies or have an issue with a
shipment. The local office didn’t touch
orders… orders came from warehouses all over and (in my opinion) were not
packed by folks who had any idea what a vent circuit should look like for a
child. We’d get wrong items every month…
or miss items that we desperately needed and had no way to get a hold of a
person to put in an urgent request. This
was incredibly frustrating.
We had an appointment in the pulm clinic once where the RT
asked how our DME was doing and if we needed anything. I said, “I can’t go home without some trach
ties. Trach ties were the one thing left
off of our shipment 16 days ago and with a skin infection, I’m not reusing ties.” The RT gave me a card for John Reed from
Central Ohio Specialty Care and said, “You need to call this guy. I promise he’ll take good care of you.” We didn’t go home that day, we were admitted
to PICU, so trach ties were supplied. I
made a phone call to John that same day and he said, “We’ll take good care of
you. I’ll have trach ties in your hands
before you leave the hospital.” He
showed up the next day with two boxes of ties for me. He took care of all of the transition and
insurance implications of switching DMEs (which isn’t an easy task). He showed up to deliver all of our new
supplies with a familiar RT (Monica… who had worked for our previous DME). Did I mention that John is one of the owners of
the company? Yep – the owner of the
company showed up to help set up our equipment.
He also made several of our deliveries himself when he knew something
needed to go out. Since this time, their
company has expanded greatly… and for good reason. John hasn’t lost that personal touch,
though. When we sent out Thank Yous to
our medical team for Ellie’s birthday, John sent a package back to us full of
gifts for Ellie’s birthday. I was
humbled to tears! Kevin, our delivery
driver, is always personable, as well.
Mary is another RT that we see from COHSC. I can’t say enough how wonderful it is to not
have to worry about medical supplies.
Seriously! When I’m low on
something – or Ellie’s sick and needs different equipment than normal, it’s no
stress at all. I call Heather or Laura
and most times, we have the needed item the next day. When equipment malfunctions, new equipment is
on its way to our house immediately.
When we’re planning a vacation and we’ll need portable equipment, they’re
hooking us up with exactly what we need and helping us make contingency plans
with the closest children’s hospitals in case something goes wonky and we’re 20
hours away. COHSC has exceeded our
expectations at every turn. If you know
anyone in the Ohio area who needs a DME for pediatric supplies (yes, they only
supply pediatric patients… which is amazing), I cannot recommend COHSC
enough. We’ve had nothing but amazing
interactions with their entire staff. It
makes me sad that there is such an immense need for pediatric home medical
equipment, but I’m endlessly thankful that people like John step up to fill
that need with utmost care.
And these two shout-outs wrap up days ten and eleven for
me. Tomorrow (or maybe late tonight), we’re
giving a shout out to tomorrow’s birthday boy... because who deserves a shout
out more than that guy, right? Love y’all…
hope you’re having a wonderful Christmas weekend. Hope you’re staying warm and safe and eating
all the yummy food you can while hanging out with family and friends. We had a blasty blast last night and look
forward for five more Christmas celebrations to come!
Kaleb and friends dressed as Rudolph last week
Kaleb helping Ellie during their holiday open house
Wilma Valentine leaves us with lots of photos of Kaleb in action during daycare
He loves all the sensory activities they do in daycare
Ellie was not a fan of touching the pumpkin guts in class, but stirring them... she could do that!
Kendra (OT) helping Ellie ride the pony on Fall Fun Day
Ellie walking with her para, Beth, during the costume parade - Kendra is close behind.
I can't handle how cute this craft was for their week studying Italy
Lance getting his face painted at the Shelby County Board of DD's anniversary party
Kaleb getting his face painted by April (one of his teachers from last year)
Ellie boarding the bus on her first day of school
During her first day, her teacher, Hayley, sent me this photo to let me know that Ellie was doing just fine.
Okay - so admittedly, I don't have many pictures of what COHSC helps us with... but here is a snaphot of the equipment we need when Ellie sleeps.
I took this one to text to B that a shipment had arrived... this is one month of supplies for Ellie... and this is when she's healthy and relatively low maintenance. When she was on the vent, we got a whole lot more than this.
Here is her set-up from when she was on the vent at night... we're creatively hiding a TON of stuff here... but see that little buggy in that crib?
Here's a picture of the cards we sent out to our medical team to celebrate Bug's bday this year.
Before we had Ellie, we searched around to find a
pediatrician or group of pediatricians who were BCMH-approved providers. The pediatrician we had for our boys (Dr.
Smith) was not part of this network at the time, so Ellie’s appointments would
be in a different location than the boys’.
No biggie. We chose a place that
seemed great and came highly recommended from people we knew. Now, I’m sure this practice would have been
just fine for our boys… but I struggled with them accommodating Ellie. First, we had the appointment about her
hearing test where I explained everything on the phone and they made an
appointment for a week later, only to have the doctor walk in and say, “Oh, she
has Down syndrome… I can’t do anything for her ears here… you’ll need to go to
Children’s”. It wasn’t the first time we’d
been in the office – we were not new patients – and for us to make another
appointment in our already packed schedule or to rearrange work to make it to this
appointment only to be told they couldn’t do anything was frustrating, to say
the least. We dealt with the frustration
and moved on. Each time we came in,
though, there were always extra people who came in with the doctor to “get
experience”. Now, this happens all the
time in the hospital, yes, but I felt like every time we had an appointment in
this office, there was a new student that was coming in to check out
Ellie. I don’t normally mind, but when I’m
making an appointment to be seen, I’m not as interested in the teaching moment
as I am in getting our concerns addressed.
The straw that broke the camel’s back here, though, was when I was
certain Ellie had impetigo on her face and neck… creeping closer to her trach stoma
each day… and we were in the thick of RSV season with a kid that was already
struggling through. I’d asked if I could
come in and go directly to a room (as to not sit in the waiting area and get
covered in sneezes). I’d asked if we could
come in early or a bit late to clinic hours.
I’d asked if I could send photos of the spots for the nurse or doctor to
evaluate. I even asked if I could just
check in from the parking lot and then come in right when it was our turn. All of my suggestions were turned down
flat. I either had to sit in their
waiting room (which was a hot bed of disgustingness during cold/flu season), or
I couldn’t get the simple ointment I needed to control the impetigo and keep it
from spreading to her stoma. I didn’t
feel like I was asking too much and I feel like I offered a ton of alternatives
that would work for us. Still turned
down. On this particular day, I had
already vented my frustrations to all three of our nurses and they all agreed
that it was impetigo and as I dropped the boys off at preschool, the school
nurse also looked at my photos and agreed.
That afternoon, I took the boys to their pediatrician and asked if they
were able to make a diagnosis based on a photo at all.
Their pediatrician took one look at the photos I had, and
wrote me a script for the ointment I needed.
Definitely impetigo. Why was that
so hard? One of the nurses let me know
that it’d be no problem giving us a private waiting space in the back when we
checked in for appointments. This would
mean that we’d have a clean place to sit and not worry about Ellie grabbing a
toy that another kid just coughed all over.
Sounds like I’m a germophobe, I know… but if you know me, I’m the
farthest from one. I just knew Ellie
couldn’t afford to risk getting RSV or other simple colds that her brothers
could handle no problem and that while the waiting room was clean and tidy,
sitting next to a sick kid was not an option for us. This doctor had no problem accommodating our
needs with Ellie and we made a seamless switch… and we couldn’t be happier.
I’d actually met Dr. Smith when I was a photographer at the
hospital. At that time, I thought she
was kind of bossy – but maybe that was just because we shared a space in the
nursery to work. She’s direct and doesn’t
add fluff. When I was working along side
her, I wasn’t so sure how I felt about this.
As a mom, I needed this from our pediatrician. Dr. Smith doesn’t get too excited about
things that aren’t a big deal – but she’s thorough and evaluates concerning
situations with great detail. She’s also
incredibly personable. Since she sees
all of our kiddos, she’s helped us through wonky situations with each of them –
full of compassion and understanding. We
couldn’t ask for a pediatrician better than her. She’s feisty and fits our family and our
ever-changing needs very well.
Rewind again to when Ellie was itty bitty and home as a
newborn. I’ve posted before about her “normal”
first two weeks, then about her going into heart failure at 15 days old. Once Ellie was put on diuretics by
cardiology, she lost weight in a hurry. When
she was a month old, she had been on diuretics for about a week and had dipped
below her birth weight. Not cool. She was very skinny at that point. That’s when we were admitted to Dayton and
worked through different techniques to beef up her calorie intake. In the end, we came home with our first
feeding tube – an NG tube. With this
came some more conversations with Help Me Grow and our BCMH nurse, Jenny, from
the Health Department. The week after,
we started getting visits twice a week from a nurse at the Health Department,
Deb. Maybe part of me seeks out adult
interaction because I work from home and my interaction is remote, or maybe it’s
just socially ingrained in my personality, but when people come into our home…
we connect. I’d known Jenny since I was
a little girl. We went to church
together and she had kids right around my age.
When I saw her come through our front door, it was a welcome level of comfort. When we were in Cincinnati Children’s for
four months, Jenny sent us an ecard every single week. I’m not kidding… she didn’t miss a week the
entire time we were there. She
constantly encouraged us and prayed for us.
We’ll never forget her generosity and outreach. When Deb started coming out to weigh Ellie,
she was a stranger… but only for that first visit. By the second visit a few days later, we had
plenty to talk about and the boys squealed with delight that Deb was here
again. Deb checked in with us while we
were in Cincinnati. Deb and Jenny both
followed our story on this blog, too. Earlier
this year, when I found out that Deb had been hired at Shelby Hills as the new
school nurse, I was elated. I had so
much anxiety swirling around sending Ellie to school without her full-time
nursing staff, but I knew this was a step we needed to take. When I heard that Deb would be just down the
hall each day, it put my mind at ease.
Deb knew all about Ellie’s history and we were close. I knew that Deb wouldn’t hesitate to call or
text me when something was odd with Ellie – and that’s exactly what’s happened
this year. It’s a lot easier letting
your baby get on that big yellow bus when you know so many people on the other
end of her trip and you know how much they already care for her before she
steps foot off the bus on her first day.
We are so incredibly thankful that we have these women in our lives!
Finally, we started going to the Down Syndrome Clinic (or Developmental
Pediatrics) at Dayton Children’s when Ellie was almost two years old. I know, I know… we were supposed to start
there when Ellie was 4-6 months old.
Well, that didn’t happen. With
all of our other specialists on board, this one just kind of got pushed back
until we were in a stable place and were able to get into the clinic. On our first visit, Dr. Kasten told me that
looking at her chart, she would have never expected Ellie to be doing as well
as she is. That’s not the first time we’d
heard that! She couldn’t believe how
much Ellie was doing and how quickly she seemed to pick things up. She said, “She’s going to be walking in three
months”. I didn’t think that was
possible, but she was spot on.
There’s always a level of expected delays, but Dr. Kasten
gave us a list of things we could be doing with Ellie that would help minimize
the gaps we’d see between her and her peers.
One of the things we were already doing a little, but she highly
encouraged was sign language. We’d already
been teaching Ellie some sign language and at two years old, I believe she knew
somewhere around 20 words. Dr. Kasten
was impressed, but said, “She seems very social. Let’s focus heavily on sign language because
even when she starts to talk, she might have some trouble articulating what she
wants in a way that you can understand.
If you give her a huge signing vocabulary, she’ll be able to communicate
so much more and possibly minimize some of the frustration with not being
understood.” Easy enough! We signed up for a monthly all-access pass
with Signing Time TV and Ellie’s vocabulary took off. By her third birthday, she knew about 120
signs… and that is expanding all the time now.
Ellie is talking now, but signing far more words than she can say. There are days when she comes home with new
words that I need to learn so that I can understand her, too… this is
wonderful!
If you are looking to teach a little one sign language, I
HIGHLY recommend Signing Time. You can
buy the DVDs, but we opted for a monthly access plan that gave us digital
access to the whole library. Ellie loves
it. It’s how I get her to focus on
something other than the 37 leads being attached to her during a sleep study…
or how Melody gets her to stay relatively still so she can do her hair. Score!
Dr. Kasten is also encouraging when we’re trying new things (like
Learning Program) or when she had ideas that are different from mine (like
potty training techniques). Because she
sees hundreds of area kids with Down syndrome and her sole focus is on
development, we value her opinion and suggestions. As if visiting her in clinic wasn’t already
fun for us, our last two appointments have also had Lisa join in. Lisa is a genetic counselor, but more
importantly (in my opinion), she’s a local mom who has a daughter with Down
syndrome, too. She’s the genetic
counselor that I met when I was pregnant with Ellie who gave me the straight
talk about kids with Down syndrome being “happy all the time”. Ha!
Lisa said, “You’ll hear everyone tell you that kids with Down syndrome
are always happy. That’s not true. They have the full range of emotions that you
and I have. I will say, however, that
all the kids with Down syndrome I know do have one thing in common: they’re all very stubborn.” This was met with laughter… and over three
years later, she could not have been more accurate. I love reading about her daughter (who is in
middle school) and I can’t help but wonder how our stories will be relatable or
totally different. Because, after all, each
of our children has their own little personality. Just as all three of my kids are so different
from one another, every kid with Down syndrome is different from the next. This is one thing that took a while to internalize
for me – but this amazing staff of medical professionals helps me understand
more and more each day.
Thank you, thank you to all the ladies on this list (this
might be my first post where all of our medical team members were women). Thank you for being my sanity and my support
system – thank you for being so real with me.
And for all of you reading along, thank you, too! We’re now nine posts through these twelve
days of Christmas… and since I procrastinated a bit, I’m going to have to post
one each day until Christmas Eve. Let’s
do this! I hope that you are enjoying
all the wonderful things this time of year and not making yourself too crazy
with the hustle and bustle of it all.
Ellie is all smiles with Lisa and Dr. Kasten
I added this photo because I found it as I was digging through old photos and it was just too cute to leave out. - Oct. 2014
This was shortly after Ellie got the NG Tube and finally started to gain a little weight.
It’s easy to get frazzled by all the things we (as parents)
have going on around this time of year, especially when each trip out the door
involves bundling up little ones. We can
drive ourselves crazy with sports schedules, our own work, and an ever-growing
list of school/church activities that we need to do. Throw in holiday parties, shopping lists, and
that stinkin’ Elf on a Shelf, and it’s no wonder parents are absolutely crazy
before we even get to Christmas morning.
Speaking of that elf, I swore we’d never cave and start that
tradition. But two years ago, both of
our boys were in preschool and Kaleb’s class had an elf. Every day on the way to and from preschool,
those boys sat in the back of the van and excitedly talked about where the elf
might be today… or after school, what kind of silly place he hid. They lit up.
They were talking so fast that they could barely catch their
breath. I’d be greeted with, “Mom… MOM,
guess what Larry did today?” and giggles.
In those car rides, I came to a realization.
This time we have when Christmas is truly magical for our
kids is so small. For our kids, they
didn’t really get too excited until they were about three years old. I’m guessing that we only have maybe one more
year of this magic with Lance. So
really, by the time he’s eight (he’ll be seven next month), he’ll be on the
other side of this magical age. Don’t
get me wrong… Christmas will always be wonderful… but something about the
excitement of little kids at Christmas is unlike anything else I’ve
experienced.
I’m keeping this post short because this is so simple… but
was a big realization for me. This time
we have when innocent abounds and there is wonder in every drop of life… this
magical window of childhood… it’s tiny in the grand scheme of things. I want to soak it all up. I want to live it to the fullest. Does that mean that our elf does elaborate
shenanigans each day? Nope – the most
exciting thing he’s done was hide in a stack of toilet paper with a sign that
said, “Do you want to build a snowman”.
I’m not saying you have to go over the top here… but if you like to,
have at it. There is a tiny amount of
time when they can’t wait to get up on Christmas morning and tear through
wrapping paper… there is a tiny amount of time when they’ll stand proud (even
without any front teeth) in front of church and belt out all the songs in their
Christmas pageant. There are only a few
years when they come home to practice the lines of their Rudolph play and
Christmas songs with you. Kaleb wakes up
each morning, climbs into my bed while I hit snooze, then pops up to my alarm
to go find Luigi, our elf, before he goes to the bathroom. Sometimes our elf forgets to move – meh…
whatever. It won’t be long before they
think our family gingerbread house construction session is lame. It won’t be long before they stop making
paper ornaments to hang all over the tree… or before they no longer bring home
their cotton-haired Santas home from school and beg to hang them on the doors.
This time is small, folks… and if I’ve learned one thing
about children these past seven years… it’s that every stage is fleeting. And while I’m guilty of wishing for the next
phase (no more diapers… please) – I have to stop myself and remind myself that
they’re only this little for a short time.
While I’m not going to go overboard making every stinkin’ day magical… I
can suck it up and do a few little things to keep the magic alive in our
household. I have to say that I enjoy it
more than they do – even if I hate the elf.
So this Christmas, spend some time baking cookies, assembling a
gingerbread house, driving around to look at lights, making hot cocoa, ice
skating, or moving that crazy elf. I
know time is tight… trust me… I know that full well. But the memories are forever. I’m not saying overbook yourself… that’s
silly, too… but let them be little. And
for the love of it all, share some of your pictures and ideas with me. I’m always amazed to see the things other
people come up with. Soak it up, folks –
either with your own kiddos, or with nieces, nephews, grandchildren, and
friends. Enjoy a little extra innocence and magic this year!
And for any of you who have been following along - tonight is Ellie's capped sleep study. Please send some happy thoughts and prayers our way. This is a big deal... and we're hoping for great results. I don't know when things will change if it goes well, we'll wait and see. I'm just hoping for a wonderful night of sleep for Bug... I know better than to think that I'll sleep much at all... but it's all worth it.
Kaleb decorating a cookie at their preschool open house
Lance (aka Joseph) at our church program
Kaleb getting a pep talk from Coach Daddy before he went in for his 2nd wrestling match on Sunday
Ellie using far too many sprinkles on her cookie
Do you think he's a tiny bit proud of his frame?
Ellie wanted all the sparkles on her frame.
This is as elaborate as we get with Luigi
Annual Christmas caroling to Great Grandpa Schroer and Grandma & Grandpa Schroer
The toothless wonder with Great Grandma Shuster.
He is excited that he can sing "All I want for Christmas is my two front teeth" this year.
Singing for Great Grandma Shuster - Ellie, not so much
Jingle bells with the music at the Pulm Christmas party
Lance was so proud of his sprinkled cookie
Sensitive Santa was a BIG hit!
More Luigi shenanigans
There's a house in Piqua that has a ridiculous amount of lights... we loved it
We’ve always had private health insurance through my
employer. Our family has been covered
continuously. So we’re just like the
rest of the privately-covered families out there. We still pay almost $600 per month in premiums to
turn around and pay a $3,000 deductible before any services are covered (to break that down quick, we have to pay out over $10,000 a year before insurance touches us... and yes, we end up paying out all of our deductible & a healthy chunk of our out of pocket each year). Honestly, I’m very thankful that we have what
we have here. We are fully aware that
our insurance plan is pretty good [and we know that families buying insurance through the marketplace are paying far more than $600 a month in premiums]. That’s
not to say that insurance hasn’t changed incredibly over the past few
years. There’s no debate there. When I had Lance our deductible was $500 and our
family out of pocket max was $2,500.
Ha - if only! That was only seven years ago…
and we had cheaper premiums to boot. My
purpose here is not to complain about insurance, but instead be eternally
grateful for it. Back in the day when
our private insurance was all the coverage we had, I had a very different view
of government sponsored insurance plans.
I thought they were only for low income families (not that we’re
anywhere near a high income household at all… AT. ALL.) and that they were frequently abused. I had no idea how diverse they were, though.
Towards the end of December 2014, we were nearing the 30-day
mark of being inpatient in Cincy and the financial office for the hospital called me
down to meet with an advisor to talk about options. Uhhh… okay.
Theresa sat me down and explained to me all the ins and outs of medical
billing and options we had to handle the massive financial burden that was
headed our way. When we were in the ICU,
the average daily charges to our insurance were about $14,000/day. So if this had been our first hospital stay
and Ellie hadn’t had additional tests and surgeries, we’d already be looking at
$420,000 hitting our insurance… which is pretty much what happened (but we also
had our prenatal care, three other hospital stays, three surgeries, and tons of tests
hitting insurance that year, too). By
the time Ellie was four months old, she’d accrued over $1.8 million in medical
claims. Now, if that was back in the
days before the Affordable Care Act, she would have already maxed out her lifetime
benefits with our private insurance. LIFETIME
benefits - at four months old. Ouch! This is when we initially realized how
amazing insurance really is. Yes, we
were responsible for our $2,500 deductible that year and we had to cover our
$8,000 out of pocket max, but that was chump change compared to her total
billed claims. [Since this, our deductible and out of pocket max has increased…
but is still a tiny percentage of what we use.]
Fortunately, when you have extensive medical costs like
that, and thirty consecutive days in the hospital, you qualify for additional
medical coverage. Starting in 2015,
Ellie was eligible for the Medicaid waiver program. This meant that Medicaid would pick up most
of her medical costs that insurance didn’t cover. Did we still have to pay our deductible? Absolutely.
Did we still have to cover normal expenses that the rest of our family
accrued? Of course. But once Ellie was on the waiver, it
essentially disregards the income of the family as a condition for eligibility. Whew!
Once we had this waiver established, we had to also work on getting the
Ohio Home Care Waiver secured because Medicaid, on its own, would not cover
home nursing. Now, in the state of Ohio,
the hospital is not supposed to discharge a patient with a new trach without
the Home Care Waiver in place (this is what we were told, at least). It does
happen, but our discharge planner said that they desperately try not to do
that. Here’s the reason for this: once you have a trach, you have home care
nursing hours… you also have a boatload of monthly medical supplies and hella
expensive medical equipment that stays at your house. Home nursing alone runs about $15,000 per
month. When Ellie came home on a
ventilator, we were running about $10,000 per month in medical supplies and
another $8,000 a month for medications.
In our case, our medical supplier (DME) is out of network, so our
insurance would only cover that at 60%.
Our private insurance doesn’t touch Ellie’s medication, and maxed out at
60 lifetime days in home nursing. So
even with our private insurance running at full blast, we’d have to cover
$27,000/month out of pocket just to keep Ellie home and healthy. Heaven forbid she get sick or need another
surgery (or eleven). These programs are
set up to make sure that families like ours are able to function. We have two working adults in our family, we
pay for the best health insurance plan provided by my employer, and we stuff as
much money into our Health Savings Account as we’re allowed by the IRS each
year to make sure we can pay those medical bills coming in. No matter what we do, though, there’s no way
to afford $27,000 out of pocket each month.
We also have a third back-up insurance provider: BCMH.
In Ohio, the program is call Bureau for Children with Medical
Handicaps. Ellie qualified for this with
her congenital heart defect diagnosis. I
believe this coverage can cover her up to age 21 as long as she has at least
one specialist caring for her annually (cardiology, ENT, neuro, etc.). We actually had this coverage lined up before
she was born. It didn’t cover any
cardiology care prenatally, but it helped cover costs once she arrived. BCMH is fabulous. The only hard thing about it was that we had
to make sure that any providers treating her were part of the BCMH
network. While this was easy to do for,
say, a pediatrician… it was impossible to do in the Emergency Room. When we were in Cincinnati, it was hit and
miss who was a BCMH approved provider, and of course, we had no control over
who was ordering tests and who was evaluating Ellie each day. BCMH still helped a great deal.
Even now, outside of the walls of a hospital and outside the
unique qualifications under the Home Care Waiver, these programs are
amazing. When Ellie had RSV last month,
we blew through over $16,000 worth of breathing treatments to make sure she
trucked through it. Yes, of course
$16,000 at home was cheaper than just two days in the ICU, but still… that’s
outrageous.
We are what you would call a "super user" for insurance
companies. At the end of 2015, my
employer sent out a summary of total medical claims paid out by the
company in 2014. I looked at that letter, then
looked at our insurance claims for 2014.
I think there are about 3,000 lives covered by our company. Of the total insurance claims paid out by our
company for all 3,000 lives, my four-month-old daughter accounted for just over 18%. Blah! I really wanted to send out a company-wide email with a picture of our cute girl and say, "I know our premiums are going up... it's her fault... but look how cute! Thanks!" Super user is not a title we want… but we soon realized for every person that
abuses the system (and gives government funded insurance programs a bad name),
there’s a hard working family like ours that couldn’t own a home, couldn’t
work, couldn’t afford to send their children to school or daycare… couldn’t
afford to breathe without programs like Medicaid. Now… do I hope and pray that Ellie will not need these additional layers of insurance some day? Absolutely.
Do I one day hope that she’s a working adult who can subscribe to her
own employer’s insurance plan? You
bet. But until then… until we no longer have
$27,000 a month of uncovered expenses, this is where we’re at. When you think of those covered by programs
like Medicaid, know that without these programs, children and adults with
special needs could not get the medical care they desperately need. For so many families (like ours) who need to
travel out of state for certain care, private insurance is sometimes useless
and these programs are the only way they can cover these medical expenses.
Now to tell you about the hundreds of hours I’ve spent on
the phone with insurance companies… haha… just kidding… that would be the most
boring post in the world. But know that
it’s very much a part of our lives – it’s very much a part of what we do to
fight for our child and for the care, medications, surgeries, and supplies she
needs to live. When the debate turns to
health care, I have plenty of vested interest, folks. So for any of you who had no idea these
programs existed… or how crucial they are to people with special needs or
complex medical needs… now you know. You’re
welcome!
Again, thank you for following along with these posts. We absolutely could not do this without your
love, prayers, and support. Thank you,
Team Ellie Bug! We love you dearly.
How many of you are now singing along? Ha. This
post will cover most of Ellie’s other specialists: ENT, GI, Optometry, and
Audiology. That’s the best grouping I
could do here, folks.
Dr. Elluru – ENT – Dayton Children’s
We first met Dr. Elluru in the PICU the summer after Ellie
came home from Boston. Ellie was sick at
the time, and we were in PICU discussing the status of Ellie’s trach. I told him the background story for why we
thought Ellie got a trach (mostly because of cardiac-related pressures that
would likely resolve when breathing was made effortless). We then told him that when we’d followed up
with Pulm once home from Cincinnati, we’d asked, “How long do you think she’ll
need her trach” and the answer was, “For most kids with Down syndrome who are
trached for the reasons she’s trached, we start to wean off the ventilator
right around three years old with the goal of decannulation around age five”. When we were in Boston, there was some hope
that getting decannulated would be an easy road – but I gave him the (new to
me) diagnosis of subglottic stenosis.
Dr. Elluru said, “First… I’m never going to choose a course of treatment
based on a diagnosis. I’m going to see
what she can do and we’ll go from there – all kids are different.” That was exactly what I needed to hear to
know that we’d for sure be establishing our ENT care with him. I didn’t want Ellie treated a certain way
because “kids with Down syndrome tend to do X, Y, and Z”. Of course, we need to take some of those
things into consideration… but she is her own person and so far, nothing she’d
done had been textbook… so let’s not treat her like she’s going to fit into a
bucket here. I immediately liked him and
his bedside manner is fabulous.
He comes into a room and says, “Hey, momma” and talks to me
about life and family and is a friendly man to talk to. When things didn’t go perfectly in the OR the
first time he operated on Ellie, I could see that he was torn up inside about
it. He was in our PICU room afterwards
paying very close attention to Ellie. I
put my hand on his shoulder and said, “It’s okay… these things happen”. He was humbled by that response and still
brings it up to this day. To us… it wasn’t
a big deal… but the weight on that man when he came into our room was palpable. Me freaking out wasn’t going to help matters
much. Ellie would go on to see Dr.
Elluru in the OR as many times as she’s seen all of her other surgeons
combined. Of her 14 surgeries, he’s
performed seven. Her tracheal
reconstruction (Stage 1) was the longest surgery she’s endured – right at seven
hours of operating time on that one.
Dr. Elluru giving Ellie a pep talk before her first surgery with him.
And Ellie w/ Dr. Elluru last month in clinic.
Dr.
Elluru also manages our trips to the sleep lab (which we’ll be going to next
week) and all of her scoping procedures.
In our last clinic appointment in November, he said that as long as her
next sleep study goes alright (not even amazing), she should be set to get her
trach out. She may still have some
suprastomal collapse (a collapsing of her trachea just above the stoma site),
and maybe that’ll need another rib graft and reconstruction, but he thinks she
can do that without her trach. This is
all very exciting! We just may need
those bandaids soon, y’all. Trying to
not get too excited, though. After our
miserable sleep study in April where I was completely crushed with failure, I’m
trying my best to roll with the punches.
I can’t help but be antsy, though.
Here's a cool article about Elluru from when he first came to Dayton Children's. I remember the staff being super excited to have him. Click here for the article.
GI – Dr. Williams – Dayton Children’s
So this is the one area where we really don’t have issues,
but as long as Ellie has a G Tube, we’ll have GI on board to manage it. So far, Ellie hasn’t had any real issues with
her gut… which is amazing, really. We
know so many other families who have this as their main concern, so with
everything else that Ellie has going on, it’s a relief that she can eat and
poop and carry on as normal. Yes, she
has a feeding tube, and yes, we still use it some… she’ll have a G Tube as long
as she has a trach. I will tell you –
feeding tubes are amazing and super convenient… until they come out… and Ellie
is a master at pulling hers out. We’re
able to give meds through the G Tube and we don’t have to worry about her
spitting them out – this is especially helpful when we’re giving meds for
storming that have a tiny dose and are administered when she’s crazy
upset. We’re also able to give her
formula and fluids via G Tube. If you
saw my post earlier about her having RSV, let me tell you that she would have
been in terrible shape without a G Tube.
Ellie didn’t eat – not one bite – for seven whole days. She was barely awake any of the eight days
she was sick… and any energy she did have needed to go to breathing. Her G Tube allowed us access to administer
meds and give fluids and formula for those seven days so that she didn’t end up
in a worse predicament than she already was.
GI also has a dietitian that meets with us each appointment…
and some that come see us while we’re inpatient. Right now, they’re a little concerned that
Ellie is so small. She teeters right
around the 2nd percentile for weight and the 5th
percentile for height… so for a full term kiddo, they don’t get a whole lot smaller
than her. When she dipped down on her
growth curve, it was met with some concern over calorie intake and such. So our oldest and youngest kids are both ones
that we try to pump calories into. Hmmm…
that has to be a gene from Brandon… it’s certainly not an issue for me. Ha! We’re
not terribly concerned with this, though – she does eat and we know that handy
dandy tubie will come out… and then she’ll just have to eat more! And it's probably a good thing that we don't have GI issues because we're now on our third doc. We really like Dr. Williams, though... so this is fine.
I mean... if you're going to have a G Tube - might as well make it adorable.
Optomology – Dr. Liston – Dayton Children’s/ Dayton Eye
Associates
Ellie started seeing her eye doctor, Dr. Liston – in January
2017. This is another specialist that
she sees, but our visits are quite uneventful.
We originally sought him out after a referral from our pediatrician. Ellie loves to look at books – and puts her
face about three inches from the page when she does so. She also does this with my phone. We knew she COULD see things further away
because she’d sign “Daddy” as Brandon walked through the front door… but we
didn’t know how much she was actually seeing.
Dr. Liston dilated her pupils and ran some test in his office before
assuring us that Ellie’s eye sight is exactly as it should be. Yahoo!
Although, there are some pretty cute specs… I’ll keep those in mind if
we ever need them. The most excitement
we had in the eye appointment was provided by Kaleb who was grabbing a toy from
across the lobby, and asked loudly, “Hey mom, why does that lady have a patch
over her eye? Is she a pirate?” Oh, Kaleb… you kill me.
For those of you wondering, in our house, we don’t assume
that something bad happened to people who have something different (like a
patch or a wheelchair). We say, “Everyone
has different eyes, just like everyone has different skin and hair. My skin isn’t the same as Kaleb’s skin and my
eyes aren’t the same as Lance’s. My
tummy looks different than Ellie’s too… and that’s okay. Normal is boring.” Okay… so that last sentence might not sound
very nice… but it’s our way of appreciating differences… life would be boring
if we all looked, acted, and thought alike, right?
Audiology
Ellie’s had several hearing tests, thankfully, they’ve all
been normal. When she was about a month
old, we had her at a birthday party.
This party was super loud with lots of kiddos running around and popping
balloons periodically. I noticed that
every time a balloon popped, people jumped – kids cried – and the cycle
continued. After a bit, I noticed that Ellie
had slept through all of this. Later, I
noticed that even when Ellie was awake, the loud pop of a balloon elicited no
reaction at all. Could she hear? How in the world would we know if she was
hearing at all? We called her pediatrician
at the time and voiced our concerns.
They scheduled us in their office for a hearing test. I spent a few days seeing if Ellie reacted to
any sounds… loud claps… voices… her brothers and their innate loudness. Nothing.
Part of me went all fearful again.
I was already concerned with her ability to “fit in” once she was school
age. Now I was concerned that not only
would these potential friends have to accept her outward differences, they’d
also have to know a new language in order to communicate with her. Getting the cart ahead of the horse here, I
know. But if I’m being honest, all of
these fears rushed through me.
We met with her pediatrician who walked into the room to
talk with us (we’d been here a few times already) and then said, “oh wait… she
has Down syndrome… I can’t do her hearing test here. We have to refer you to Children’s for that.” Not impressed. At a time when we already had 3-5
appointments each week… I did not need a waste of time like this. This was just one of my many frustrations
with her first pediatrician. Off we went
to Children’s a few days later for a hearing test while she slept. The first round was a no-go… Ellie refused to
sleep. We had two other appointments in
Children’s that day, so we went off to another clinic, hoping to get back into
Audiology by day’s end. We managed… and
they were happy to report that while Ellie may not have the expected response
to noise, her ability to hear looked just fine.
Whew! On that day, I was thankful
that Ellie wouldn’t have to go to school with sign language as her primary
means of communication. Bahaha – how the
tide changes.
She’d go on to have other sedated hearing exams, and each
time… pass with flying colors. Yahoo! And once trached, we were working to teach
Ellie American Sign Language (ASL) on a daily basis. By age two, she had a vocabulary of 20-30
signs. By three, she had about 120
signs. Now… just a few months later… it
seems that her sign vocabulary is expanding rapidly. And you know what? Those little classmates of hers… yep, they’re
learning sign language, too. They’re not
having any issues communicating with her.
Score!
So on post #6, we’ve covered four more specialty areas for
Ellie… we’re almost through our list of medical providers. And we’re now half way through our Days of
Christmas posts to this blog. Thank you
for sticking with me through these. I
hope you’re maybe learning a thing or two… maybe you’ve found something useful
to share with someone else… or maybe you’ve just enjoyed the pictures as we go
along. No matter what, I appreciate you
following along – and I hope you’re staying warm – it’s blustery in Ohio today.
Ellie prepping for her first sleep study.
Ellie during a sleep study over year ago - when we were trying to wean her off the vent.
She's now had 7 or 8 sleep studies... and another coming next week.
This was Ellie five days after her major tracheal reconstruction surgery - Summer 2016.
I know what you’re thinking: “This lady has clearly needed a
therapist for years… glad to see she’s finally getting help.” Ha!
Sorry to disappoint you, this blog is the only therapy I get,
folks. Today’s post is about all the people
that poured into the first three-ish years of Ellie’s life through Early
Intervention. Let’s start from the very
beginning: I was 18 weeks pregnant and
we’d just found out that we were having a girl and that she had Down
syndrome. After two days of crying and
fearing for our future (and only sharing our news with immediate family
members), I made a phone call that would change everything.
I called Shelby Hills to ask them about their Wee School
program. This was a program that my
nephew had attended and I knew that he had classmates with different abilities
and I remembered seeing pictures of two little girls with Down syndrome in his
photos. I had no idea what I was going
to say or who I needed to talk to, but on that day, I needed someone to tell me
that they’d help me. They knew what to
do (because I certainly did not) and they would help navigate my way. Shelby Hills told me that the Help Me Grow
program through the health department was actually the program that would get
the ball rolling for Early Intervention (the home-based program that replaced
Wee School in our county).
When I called the number they gave me, I completely unloaded
my baggage to the woman on the other end of the line. Her name was Ashley and she listened to me
for a while, then we had a great conversation (and I shed plenty of fearful
tears) about how this program worked and what steps would be taken prenatally
and once Ellie would arrive. A few weeks
later, Ashley would come to my house to meet with me and go over more details
about enrollment, what to expect, and offer much support. She also told me that all of these services
were provided for FREE! Free, y’all. That’s incredible. Because Ellie has a diagnosis, she’d
automatically roll into a home-based therapy program and a team would be out to
evaluate her once we brought her home.
What a relief. I had help. I had a whole team of people who actually
knew what to do and would be in my home every week to make sure Ellie would get
all the care she’d need. For the first
time, I felt like we could handle what lay ahead. I told Ashley about this later, but she has
NO idea how big the weight was that she lifted that day. She is one of the reasons that I’m so very
thankful that we had a prenatal diagnosis.
We could line up the teams we’d need to help Ellie reach her full
potential before the chaos of her arrival.
Bonus!
Once we brought Ellie home, a team (not kidding, I think
five people) came out to our house to do an evaluation on Ellie and fill out
paperwork with me. The therapists moved
Ellie around, rang bells, moved objects around her, and evaluated
EVERYTHING. In the back of my mind, I
couldn’t help but worry how well Ellie was doing on this test. I’m sure it wasn’t great… and that tore at my
soul a bit. They rang a bell on either
side of her, then rambled off a certain number.
Since Ellie made no indication that she heard said bell, I was sure we
were failing miserably. Nonetheless, the
whole team remained upbeat and assured me that Ellie was adorable and doing
great and they’d be back with a plan. In
the midst of this, our boys ran around the house – Ashley tied blankets over
their shoulders like superhero capes and they were obsessed with the box of “toys”
the OT brought with her.
Soon after, Ellie would start weekly therapy sessions with OT
and PT. Her Occupational Therapist was
Kendra. Kendra would come to our house
with all kinds of fun things for Ellie to play with. Our Physical Therapist was Andrea and PT
Assistant, Molly. These ladies would
also bring things for Ellie to play with, but they also had a lot of hard work
for Ellie to do each week. We didn’t get
too far into therapy when Ellie went into heart failure. We only had two months at home before she was
admitted to Cincy. Then we’d have a
hiatus until Ellie was almost seven months old.
At seven months, we were home and resuming therapies, but Ellie had just
slightly more strength than a newborn. She
couldn’t hold her head up yet. She
couldn’t roll over. We hadn’t had much
time (because of her several surgeries) to practice tummy time, either. At an age when our boys were sitting and
starting to try to get on their hands and knees to crawl, Ellie wasn’t
supporting her head, yet. This was
hard. She also wasn’t eating by mouth at
all, really. After months of feeding
tubes and exhaustion from heart failure, she had no interest in a bottle. We could dunk a spoon in baby food and
sometimes she’d eat it… but we’d be lucky to get down 1/6 ounce. That’s a TINY amount.
On our first OT appointment back home, I had a meltdown on
our therapist. I said, “What if she
never eats? What if she never
talks? What do you think is realistic
here? I know it’s not the end of the
world, but if she’s eight and gets invited to a pizza party – I want her to be
able to eat pizza… even if it’s just a little bit.” Yes, this is a true story… yes, I used the
pizza party example… I never said I was rational, folks. My daughter was seven months old and in bad
shape, and I was worried about a pizza party when she’s eight. Ha! I
like to say that I was concerned with the big picture here.
I remember Kendra so sweetly pointing out all of the things
that Ellie does that she sees as positive signs that Ellie will be just
fine. She said, “Look at how she looks
at you vs. how she reacts to me. Look at
how she interacts with Lance vs. Kaleb.”
Yes, she was just laying propped up in that boppy or strapped into that
Tumble Forms chair, but she did interact differently with each person. She made no sound over her trach, but she was
showing personality and clearly had preferences in her interactions. These were signs that she was very social…
and that while talking would take a long time, she should be able to do it
eventually. And while she wasn’t eating,
she was gnawing on all kinds of things.
Kendra said, “As long as it’s safe, let her put things in her mouth…
tubing, cords, toys, blankets… we need to expose her mouth to as many textures as
possible because sometimes it’s not that a child doesn’t like a taste, it’s
usually that they can’t tolerate certain textures.” If a child has an aversion to a certain
texture, they’ll eliminate any foods that have that texture. It only takes a few texture aversions to
eliminate almost all foods. Hmmm… that
makes sense. So away we went, letting
Ellie put everything in her mouth… and purchasing chew sticks and z vibes and
textured spoons and lip blocks. A good
portion of OT at this stage was feeding therapy.
For our PTs, Ellie would work hard, but sometimes she’d
amaze us at how she’d cheat through things – like when she’d swing her legs
around like a windmill as she was learning to sit up, or how she’d use her legs
to scoot across the floor instead of putting weight on her arms. We’d spend so much time giving her a core
workout reaching for things. Ellie would
always amaze us as she figured out ways to get around the really hard work – I’m
telling you, she’s a problem solver! She
still put in the work, though, and while milestones were few and far between,
they were met with grand applause and excitement. Our therapists would find creative ways to
get Ellie to do the work – having her pull her stuffed animals on a blanket so
that Ellie didn’t realize we were trying to get her to walk backwards, putting
stickers on her shoes so that she’d try to get the sticker – therefore standing
on one foot. Basically, therapy was a
series of games that I would have NEVER thought of that’d get Ellie to put in
the hard work of pushing through her extensive hypotonia and wonky loose
joints. I was always amazed at how many
techniques our therapists would come up with to get the job done.
We met periodically with our Speech Therapist while Ellie
was really little, but she started playing a much bigger part when Ellie was
two. Alison came over to talk to us
about all the little things that go into speech that don’t involve talking at
all (like taking turns, eye contact, and many aspects of play). While I felt like Ellie was doing well
learning sign language and using it when we asked, there was one thing that we
hadn’t heard… and I broke into tears when I nervously asked about it. Ellie was two years old and we’d never heard
her laugh. That broke my heart. She was finally making more sound, but her
laugh was still completely silent. As
much as that silent cry hallowed out my being when I first saw it after her
tracheostomy, the lack of laughter for two years was worse. She laughed, yes, but didn’t make a sound
while doing it. If you’re a parent, I’m
sure you remember squealing with delight when your baby started to coo… and you
melted when those first little happy bursts came out. When your baby was a few months old and
started to giggle from his/her toes, you lost it. We’d been waiting for this… waiting and
waiting. At two, we still had no giggles…
and admitting this to her therapist was awful.
Looking back, it really hasn’t been very long that Ellie’s been able to
giggle. She turned three in September
and we really didn’t hear a giggle until this summer – but she started giggling
while we were at the beach. The waves
crashed around her and that little chuckle came from her toes. I was in tears. Way to save that happiness for the best possible
experience, Ellie!
Kendra, Andrea, Molly, and Alison were at our house every
week. They gave us ideas and “homework”
to do each week and we’d share these things with our nurses. They’d bring out tools we could use and show
us how to use the things we already had as makeshift therapy tools. I probably drove them crazy when I’d email
them about toy ideas for birthday or Christmas gifts. I’d email when I wanted to buy Ellie a new
pair of shoes, or when we’d get an amazing report from the Developmental
Clinic. These ladies have been with us
through defeat and watched Ellie hit each milestone.
Ashley still came out to see us, but this time as a Developmental Specialist. We’d also meet
with Diann to come up with goals every six months. We’d meet with Nancy Stiefel, the director of
Early Intervention, too. Nancy planned our EPIC group meetings - like pool parties and playground days in the summer. When it came time to
plan for our first IEP meeting, this whole team came together again (along with
preschool staff) to help formulate a plan and set goals for Ellie. I cannot say enough about the support system
we have in Shelby County. I’m forever
grateful that we did not have to move our family in order to get the best
possible care for Ellie.
This past spring, I worked with Melissa Rittenhouse at
Shelby Hills on some “natural environment” photos (photos of Ellie in our home)
to use for their website. Melissa also
scheduled some time for a video interview about their program. I couldn't love this video any more. If you haven’t watched this, take a second to
at least appreciate a great photographer and his video editing skills… and
Ellie’s adorable in it, too.
As I was typing this, Ellie walked out of my room while
taking a bite out of a banana she’s carrying.
As she left, she grabbed my door handle, said & signed “thank you”
and shut my door. A little bit ago, she
came up to me, tapped me on the leg saying, “mom… mom”. She signed “eat” and then, “hungry”. I asked her what she wanted and she said, “ummm”
then signed “banana”. I know this doesn’t
sound like much, but to me, this is a huge success. She’s amazing! And she didn’t get this way on accident. Many professionals have logged countless
hours pouring into this kid and she’s soaked so much of it up and used these
skills as a launch pad for future development.
While she speaks a language that not everyone understands, she speaks it
well and knows how to use her words.
This is amazing to see. High
five, therapy team, high five!
We have no shortage of photos taken during therapy sessions... here are just a few:
Andrea using leg immobilizers with Ellie - this was her 1st time standing, ever.
I was so excited. Ellie was about 13 months old here.
Epic playgroup Halloween party 2015 - Raggedy Ann playing with Molly.
This is a bit out of focus, but Ellie was working with Alison at another Epic group.
And with Andrea again - playing with farm animals to try to get Ellie to stand again.
This past summer, Kendra started working on preschool skills with Ellie - sitting in a chair, using school supplies, listening to directions... I couldn't contain my excitement here.
Ellie loved the dobbers.
OT playing school again - this time making a caterpillar and using glue for the first time.
And yes - Ellie's hair was in foam curlers this day.
Our last Epic pool party... Ellie walking out to lay around with her brothers.
Our last Epic group playground day - Andrea crawling through the tunnel behind Ellie.
The first time Ellie climbed a ladder! Eeek - so exciting.
One of our testing days - getting ready for preschool with Alison and Kendra.
Andrea's last day in our house. We miss all of these ladies so much - but they still work with Ellie at preschool - along with more staff.
