Dear Sadie,
Today you are turning TWO. Time has flown by this year. This
year has all been about recovery, acceptance and adaptability. Each day we are noticing your improvements. Minor things that normally people don’t catch. Don’t
think we don’t notice Miss feisty pants. There is not enough adjectives to
describe how amazing you are and how much fun it is to see you blossom. Your
giggle is addictive and infectious and I try everything I can to make you laugh
on purpose. You are always trying to get into the fridge and when you see an
opening you RUN in your walker as fast as your feet will let you. You have
learned escape tactics like opening the gate or how to get on the dogs good
side by offering them your vegetables. You love to bug your sister during bath
time. As soon as you hear the water running in the bath tub you have to be
right there at that very second. You love to knock all of your sister’s toys
off the tub ledge. I always hear “Sadie NO!” followed by giggles.
However, unfortunately you have some limitations. You are
working on this of course and as you get older you will learn to control your
body moments. You struggle with coordination and balance. Two things that are
not easy to master. At the beginning of the year you started getting really frustrated
with PT/OT. You seemed to exhaust yourself and then refuse to move. Per insistence
of your OT and PT therapists they requested we do an internal scope (Upper and
lower EGD) look at your belly and your throat. PT/OT didn’t want to hurt you
when they pushed you further with your therapy. This required you to be under
general anesthesia. Which is always scary when you are small. So April 2016 we
had it scheduled. The good news is your GERD was healing nicely. You had very little
damage and your belly was cleared. However, they discovered you had Laryngomalacia.
Fortunately they decided to do the surgery to repair at the same time.
You recovered from surgery nicely. It has been considered
that 75% of your issues are directly related to the Laryngomalacia. They think
that is why you had the silent reflux and had so much trouble gaining weight.
But also the reason why you had speech delays and will continue to struggle.
Your once loud stridor is no more. You no longer sound like Darth Vader. (At
least you were a cute Darth Vader.) Your food intake has increased and you seem
to tolerate your PT/OT sessions better. Since April you have been showing so
many signs of improvements.
So where are we now? They are setting you up with a fancy
Gait Trainer so that you can learn to walk better. They are having use a compression
vest which feels like a big hug. Also sometimes they are putting arm braces so
that you won’t turn your arms. As for
meds you are on a very small amount of Nexium but we are likely going to keep
lowering this once we get the GI’s permission. We are slowly switching you to
whole milk from your pricey organic toddler formula. After we are done with
these cans no more formula! You eat EVERYTHING you can get your hands on. Some
of your favorites include pancakes, Baka’s apple pita, salmon, black beans,
cookies, eggs, oatmeal, and mac and cheese…etc. etc. You LOVE it all.
One of the frustrating questions, and thank god it has been
much less frequently, is when people ask me what is WRONG with you? I simply
say there is nothing wrong with Sadie. She is healthy, happy, learning at her
own pace. She has the most amazing support team. 2 PT therapists, 1 OT therapists,
and 1 Speech therapists. She has the most amazing loving caretaker her Baka.
She is spoiled with love and kisses all day and pampered like a princess. You are
amazing and people should know that. Daddy and I brag on your accomplishments whenever
we are given the opportunity. We want you to know how much we love you and how
proud we are of your progress. We love watching you flourish. Keep it up
my love.
With love on your Birthday,
Mama
Pictures in review for 2015-2016 notice the posture improvements over the last year.
