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
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.
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