heart. speak with love. - RSS

listen with your heart. speak with love.
Our Family's Cochlear Implant Journey
Saturday, April 14, 2012
Spring Sports
We're a busy sports family these days. Christian has Tai Kwon Do on
Mondays and Wednesdays. Soccer on Fridays, Lacrosse on Saturdays and
Swim Lessons on Sundays. The back of my car looks like a locker room
and I feel like I'm constantly washing and rinsing water bottles.
In addition to learning the ins and outs of each of his sports,
Christian is also learning how to advocate for himself and manage his
hearing access. He's now independently changing his program, placing
himself in a better position to see coaches and asking team mates to
ay it louder or speak again. I'm so proud of him.
I can't believe just a few years ago I thought he wouldn't be able to
play on a typical team. Look at him now.
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Getting ready for practice
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Orange Belt Testing
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Orange belt graduation!
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He loves Tai Kwon Do!
at 4/14/2012 1 comment: Links to this post
Thursday, April 12, 2012
Moved Up.
Every time my phone rings with a Baltimore area code, I race to pick it
up hoping that it's Hopkins rescheduling Christian's surgery date to an
earlier slot. I've been doing this for weeks, and I have had lots of
disappointment with telemarketers.
Until today.
This afternoon we got the call.
Christian's surgery is now scheduled for April 20th. Which is will be
exactly 4 years and 1 day from his first CI surgery.
His pre-op is this Monday. He'll only miss 2 or 3 days of school tops
ince it's over a weekend. I'm pulling out the button down shirts for
post-surgery, stocking up on popsicles, and heading to Target for some
new Beyblades and Legos for my brave boy.
at 4/12/2012 1 comment: Links to this post
Tuesday, April 3, 2012
By the Numbers.
34-Days until Christian's 2nd Cochlear Implant Surgery.
10.5-Lily's new shoe size. My hopes of her fitting into a perfect
ample size Louboutin are fading fast.
13-Christian's new shoe size. Further validates my hunch that he is
going to be quite the jock.
9.5-MY HUGE SHOE SIZE in Tory Burch's new wedges. Really. I guess if
anything on my body has to be fat, I'd rather it be my feet!
5-Number of bottles of wine consumed this week with friends (all time
low...it's Wednesday too!)
3-Number of days until my roomie and her husband come to visit (also
known as the reinforcements).
1,000-Number of times my kids have asked me to go to Mexico since our
best friends are traveling there for break. Sorry guys. Next year.
at 4/03/2012 1 comment: Links to this post
Friday, March 30, 2012
Spring Break.
Christian has been on Spring Break this week, and Lily's is next week
(Hooray for next year when they will FINALLY be on the same schedule).
We've been doing a whole LOT of NOTHING. We've focused on sibling time.
The kids have had lunch together everyday which honestly is my favorite
time with them. Their little conversations together are my treasures.
THEY love having what we call weekend peanut butter (Christian's school
is nut-free so he never gets it at school) sandwiches. Christian TUCKED
Lily in her bed for naps, and then followed it up by sitting at the
kitchen table and doing Legos with me.
Lots of puzzles were put together, shows watched, and hours in the kids
camp at my gym followed by smoothies in the afternoon. Since Christian
is in school full-time and our afternoons are spent at the martial arts
center, ballet studio and soccer field they really don't get much time
together. I am so thankful for this past week. Sure, a week in Cabo
would've been great. But staying local and just enjoying my kids being
together was pretty darn good too.
[froyo.jpg]
They LOVE frozen yogurt...Christian always choses Coconut and Lily
tries something new every time.
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Spring Break Naps. Such a hard worker, he SO deserves this time.
at 3/30/2012 No comments: Links to this post
Wednesday, March 21, 2012
Reality Check
We took one more step closer to the next chapter in our CI Journey
today with a quick phone call from our implant center with our 3
activation dates. Activation will happen about 4 weeks after the
urgery  in a series of 3 appointments. The good news is that if our
urgery remains on May 7th (we're still hoping for a sooner date), the
first two activations will be when he is still in school.
This is all starting to feel more and more real. I can't even begin to
describe the sense of relief that we are taking this step for
Christian. I know, it sounds so weird to feel relief before this
urgery, but I do. Plain and simple, I just want to give him the best
chance possible. And I firmly believe that this will.
at 3/21/2012 No comments: Links to this post
Monday, March 19, 2012
Lucky Number 7
2nd CI surgery scheduled for May 7th. Same surgeon. Same hospital. Same
kid. Same fears, but a bit more excitement this time around.
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at 3/19/2012 1 comment: Links to this post
Bringing Peace.
Is there anything sweeter than seeing the eyes of a Mom light up when
her deaf baby repeats a Ling Sound?
I had an opportunity to spend some time at our school's Parent Infant
Program last week chatting with parents, playing with some adorable
babies and toddlers, and showing off my little dude. Christian and his
buddy Nora (who also has a hearing loss) came in half way through to
play with the kiddos. Parents asked him questions, and teared up as he
explained all about lacrosse, Monster Trucks and his sister. My heart
was full of love and joy knowing Christian was bringing some peace to
parents whose hearts are full of uncertainty. I
Wednesday, March 14, 2012
Lemonade Stands and Nerf Guns.
It's 80 degrees at 4pm and all of the kids are out. The 2nd and 3rd
grade boys set up a lemonade stand on the corner yesterday complete
with a money box, signage, and even portable speakers for their
iPod. The bigger kids, in middle and high school were playing
basketball and lacrosse. Christian and Lily are the "littles" on the
treet, yet they always find a place. Christian manned the lemonade
tand with his neighborhood big brothers and Lily proceeded to drive
her little car up and down as my neighbors and I sat on the porch with
ome Sauvignon Blanc.
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Lily cruising with one of big kids...
I love watching Christian just being able to be FIT right in. Watching
him run and play and interact in games with ALL the appropriate social
language (including HEY, DUDE!) makes my heart swell with joy. I love
that both of my kids have such great big-kid friends that they can look
up to and learn from. I love knowing that there's nothing holding
back.  That's the miracle of the Cochlear Implant.
at 3/14/2012 1 comment: Links to this post
Friday, March 9, 2012
Wanted: Peace and Quiet
Did you know that we are by far the loudest house in all of our
neighborhood between 6:30 and 7:30pm each and every day? It's when my
kids are in the bath. Between my deaf boy screaming every word he
peaks since his CI is off, and my hearing girl trying to talk over
him...well, it's just crazy. I'm typing this as I hear the words "PEE"
and "SILLY" being screamed by my son and daughter. I'm hiding in the
kitchen drinking Petite Syrah. For the moment.
I need some peace and quiet. We've had contractors here for weeks on
end to work on the basement. Today it was the flooring folks, one of
which eerily reminded me of this guy.  I just want my peaceful house
back.
My brain is even loud. It's constantly yelling at me with all we have
going on, with our impending CI surgery sometime in May (YES, MAY) at
the forefront. I've fired off countless emails and have our team at
Christian's school advocating for an earlier surgery so we can activate
him as soon as possible. Our surgeon knows the urgency, but we just
can't make room in a surgical schedule that doesn't exist. I want this
urgery done like yesterday so we can maximize Christian's time at his
chool with rehab. Is it bad that I'm hoping that just like our first
urgery we get bumped up do to another patient missing their
appointment?
I'm thankful that I married the strong yet silent type. I relish in his
quiet demeanor. Times like these I just like to sit and hold his hand
and enjoy our silence.
Until a kid calls us, which they always always do.
at 3/09/2012 2 comments: Links to this post
Monday, March 5, 2012
Carpool Love.
After leaping into the car and buckling up:
"Bean, I got you something VERY special because I worked so hard in
testing today (he's going through his bi-annual speech and language
testing at school). Do you want to know what I got?
"Yes, Christian, YES!"
So I'm expecting him to pull out yet another Frankenstein tattoo, yo-yo
or random goodie from the prize box at school. Instead...
"Beanie, you know how you LOVE American Girl? Well, I got you this
AWESOME American Girl book. It's for you. I know you will love it. I
worked really hard for it".
"I DO! OH THANK YOU CHRISTIAN"
Heart. Melted.
at 3/05/2012 6 comments: Links to this post
Thursday, March 1, 2012
Change.
If I've learned anything over these past 5 years of being a Mom, it's
that even if I want to be fully in control, I can't. Just when you
think you have your baby's routine down pat, a growth spurt happens.
Sleeping through the night becomes a challenge again. One day they
decide they love squash, so you go ahead and buy 15 pounds of it at
Whole Foods, spend all night pureeing it and the next day they spit it
out. And you are stuck with a freezer full of squash. The vats of
butternut squash soup that my family ate for weeks on end WAS one of
those annoying teaching moments even if I just wanted to be annoyed
about it. The infamous squash incident that my girlfriends still make
fun of me about was just one of those little moments that I learned to
just go with the flow.
So here I am going with the flow. We've decided to give Christian
another Cochlear Implant. Going bilateral is a big change for him. It's
a big change of our family. We're excited, nervous, and anxious. We're
worried that our little dude who SO loves music may lose a bit of that
with two CIs. He's still so little, and the surgery I know WILL be
cary to him. If you asked me in November if I thought we would be at
this point, I would've said no. Things change. I've just got to go with
the flow.
at 3/01/2012 3 comments: Links to this post
Monday, February 20, 2012
Comic Relief
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Snapped with my iPhone. Is there anything cuter than a chunky 3 year
old in her ballet gear hobbling around the house in her Mommy's Cole
Haan booties?
Oh Lily, I love you for so many reasons, but especially how you bring
at 2/20/2012 1 comment: Links to this post
Friday, February 17, 2012
Here We Go Again
If I didn't have to go into my client's office this morning, I totally
would be putting a heavy splash of Bailey's in my coffee.
So, we're exploring implanting Christian's left ear. We've been
watching that ear carefully, and while his audiogram has only changed a
bit, his speech perception in that ear has. To put it in perspective,
Christian is at 96% in his CI ear, and only in the high 20s in his
hearing aid ear. He's doing great as a bimodal kid, but we always are
working on maximizing the use of both of his ears. We know he works
hard to listen with his CI, and even harder with hearing aid.
And so here we go again. Our school is going to work with Hopkins in a
collaboratively and we're just keeping an open mind.
at 2/17/2012 2 comments: Links to this post
Wednesday, February 15, 2012
My Funny Valentine's
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Lily's 1st Valentine's Party...You Melt My Heart S'Mores kits, complete
with heart shaped marshmallows.
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Flowers from Daddy in the morning.
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She's such a big kid now.
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Broke in my new skates in the morning and feeling the love.
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My honey made a perfect date night at home for us. Great wine,
delicious take-out, and lots of laughs
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Lily worked so hard on this.
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My big boy trying so hard to spell.
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"It's me, shooting a bow and arrow, into a target".
at 2/15/2012 No comments: Links to this post
Wednesday, February 8, 2012
Wow. It really is true that when it rains, it pours. Or in our case,
when your lower level of your house floods and results in massive
construction, kids are bound to get sick and life will be in turmoil.
We are in full-on construction mode. The bottom level of our house was
really our living area. Our office, playroom, guest room, living room
and laundry room are all down there and they have all been ripped down
to the framing of the rooms. Furniture that wasn't damaged in the flood
has been emptied and moved and all of my out of season clothes (yes,
even my 20+ Lilly Pulitzer dresses that mean the world to me!) have
been moved up into Christian's closet. I think the worst of it is that
the kids really don't have a place to go and they miss their TV time
and the toys. They are crammed into their respective rooms. My room has
turned into the TV room.
I think the worst part of it is that there is just STUFF everywhere. If
you ask my Mom, she would be the first to tell you I may not be the
best housekeeper, but I AM organized. I hate that our dining room table
has become the clearing house for art projects we are trying to save,
my printer, and random office things. I feel like I am just drowning in
all of our possessions. Our house is so dusty, and I'm worrying about
my poor asthmatic little girl.
Oh, I did I mention that Lily has a virus which left her to puke all
over yesterday?
Things aren't all doom and gloom I guess. We pretty much do get a 50%
remodel of our house. We finally are going to be able to purge old toys
and just stuff. AND, even with all this going on, my Mom, Brother and
Sister-in-Law are coming to visit for the weekend. It's going to be
crazy, but there is NOTHING better than family to perk you up when you
need it.
Are these the days that people say to cherish because they go by so
fast? I don't think they are going by fast enough :)
at 2/08/2012 No comments: Links to this post
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Christian and Lily's Mommy
I'm a 30something Mom to my two beautiful children, Christian
(6), and Liliana Grace (4) Christian was born Deaf, and was
implanted with his Cochlear Implant at 14 months of age and his
econd at 5 years old. Lily is hearing, and is a handful but a
joy in everyway! When I'm not shuttling my kids back and forth
from playdates, therapy appointments, school, and Target (we're
ALWAYS THERE!), I'm advocating for my son, and all children with
hearing loss.
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