Hello everyone. All of the posts below are from her former fundraiser site at YouCaring.com. YouCaring was purchased by GoFundMe and is being shutdown as of 7/31/18. So, we are in the process of transferring her fundraiser to GoFundMe and decided to start this blog to go along with it. So please, subscribe (Follow by Email on the right) for her updates, please share and please pray for her.
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Posted Monday,
June 25, 2018
First
off, we do want to apologize for not getting another update out there until
now. Clara has been doing so great. She is talking more and more
and trying to put phrases together…in between all the silliness of course.
Our most exciting news is that she has taken steps completely unassisted,
all on her own and under her own power. Unfortunately, we are having a
hard time getting it on video because she is getting so excited to do it, she
starts laughing and loses her balance. Please continue to pray for her
and the medical and therapy team. Clara and her team are working so hard.
We are so proud of her progress and so thankful for everyone that is
caring for her. Everything is working and we are finally starting to see
everything come together for her.
In the
near future, we are looking at another surgery. This would involve her
eyes and is to help correct some muscle issues around her eyes. We'll
have more about this once we see her doctors again. Prayerfully, this
would help with her sight and balance when trying to walk also. Just one
more piece of our little puzzle.
On a side
note, please pray for Mom and Dad. As Clara gets older, she gets a little
more...let's just say adventurous and stubborn. Our struggle right now is
the need to discipline her like any other 3-year-old for misbehaving, but
because she can’t communicate as well, it’s very trying and difficult to teach
her what is OK and what is not. She’s very smart and knows exactly what’s
going on and exactly what she wants, but because her communication is behind
because of her working so hard on her physical struggles, it’s just hard to be
the Mom and Dad we need to be with that barrier.
Thank you
all so much for all you do for us and please continue to share to get her story
out there.
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Posted Thursday,
May 10, 2018
This girl
never stops amazing us. In the last 2 and a half weeks, she has started
standing on her own. Today at therapy, she pushed a shopping cart all by
herself with no assistance. There is a video of her in the gallery.
She is getting so close to walking completely on her own. We are so
proud of her for all of her hard work and thankful that God keeps moving
mountains for her.
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Posted Friday,
April 27, 2018
Hello
everyone. First, we apologize for not getting this update out sooner.
Clara Faith has had a really amazing week!
This past
Thursday (4/19), she had her post-op swallow study. Going into her throat
surgery in January, we knew that it could fix her issues with swallowing normal
liquids, it could help some, or it could do nothing. It was very much an
unknown.
We are so
thrilled to announce that her surgery appears to have solved the problem
completely. We have begun the process to wane her from honey-thick liquids
to normal liquids. Once she is consistent with liquids by mouth, we can
then look at removing the G-tube in her tummy. We are looking at a year
for the tube removal. It could possibly be done sooner, but we do not
want to be in the hospital again during flu season unless it's necessary.
We are so
proud of the little fighter she is. She never gives up! She also
wasn't done there. Tuesday, her brother turned 9. In his words, she
gave him one of the best gifts ever! She was sitting all alone in the
floor of our living room and decided to stand straight up...nothing around her,
no assistance of any kind. It was all her. We all just froze
because it was so unexpected. Clara was so excited at herself, that she
just started laughing. She has continued to stand since then, although,
only when she wants. She apparently does not want to perform and show off
for people. :)
Her
brother always chooses to go to Krispy Kreme instead of a birthday cake.
So she got to enjoy her first glazed, hot off the line. The poor
donut never stood a chance.
Thank you
all for your words, your prayers and your support. We love you all and
are so thankful for you!
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Posted Wednesday,
April 11, 2018
Last
week, Clara had her normally scheduled appointment at the aero-digestive clinic
with CHOA. This clinic appointment is an every 6 month appointment.
You are there for several hours and see numerous doctors, then they get
together and brainstorm and come back to you with a plan for the next 6 months,
all in the same visit.
The GREAT
news is that Clara has made such good progress, they discharged her from the
aero-clinic. She will still need to see some of the specialists, but can
do so on an individual basis.
We are so
proud of her and the progress she is making. God is being very good to
her and knows exactly what she needs!
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Posted Wednesday,
March 28, 2018
3 plastic
test tubes, 2 bottles of mouth rinse and 1 over-sized Q-Tip. That's the
sample collection kit for Clara's genetic study. All it takes is a saliva
sample from both parents and the child. Something so simple that could
potentially explain more about our little angel and give guidance to her
doctors. Please be in prayer for this study. It could tell us a lot,
or it could tell us nothing. Ultimately, we know God has this taken care
of already and He knows exactly what is going on because He made her.
Through
all the good times, the hard times and the unknowns, we still would never think
about trading any of it for the precious, joyful little girl that God has
blessed so many lives with. Thank you all for your prayers and support.
Please continue to pray for Clara and help us share her story.
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Posted Saturday,
March 10, 2018
Monday's
appointment was a good day. To summarize, we have chosen to move forward
with the testing as a diagnostic tool only. We have also elected to only
have the diagnostic information reported.
Well,
what does that mean?
I'm glad
you asked. That means that we will only know the information that is
important to help find a diagnosis and hopefully a better treatment. Any
thing that she might be at risk for when she grows up will not be reported.
Ultimately, God is in control of that anyway.
Clara Faith
is getting used to her new wheels. She really loves sitting up high and
being able to see more.
We also
added a video of her from therapy. She walked the most she has ever
walked. She still needs help with her balance, but her strength continues
to grow and her balance will come with time. Thank you all for your
prayers and support!
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Posted Saturday,
March 3, 2018
