One WHOLE year in the "world"

Today marks Ruthie's discharged from Children's Hospital. It seems almost unbelievable that it has already been a year. Yet, it almost seems longer. What a weird feeling.

One year ago,



Ruthie couldn't sit by herself.
Ruthie couldn't eat AT ALL by mouth.
Ruthie was on 11 different medicines.
Ruthie was on continuous feeds.
Ruthie had to be "vested" for a respiratory treatment every 8 hours.
Ruthie needed a breathing treatment every 12 hours.
Ruthie was a fragile little girl... but PINK and ALIVE!

Today,



Ruthie is not only sitting up, but pulling to sit, pulling to standing, cruising furniture and evening walking one- handed.
Ruthie is now eating EVERYTHING by mouth AND is learning how to self feed!
Ruthie takes 3 medicines every day.
Ruthie eats 3 meals and 2 snacks and drinks milk out of a sippy cup.
Ruthie no longer requires any "vest" or breathing treatments.
Ruthie is a STRONG little girl with a bit of attitude!

And yes, Ruthie is still PINK!!!!


What a wonderful year!
A WHOLE year of living at home and experiencing "normal" life.

Thank you for all who have shared in our journey.
From doctors to heart buddies to our prayer warriors.
Not to forget the nurses! the specialists! the therapists!
And of course, our heart angel and his/her family. YOUR gift gave us LIFE. You are one MAJOR reason we are able to be at home and be healthy!

Last but not least, thank you to our families and friends.
You gave us strength and hope and now we love sharing with you...
Life outside of Children's!

Heart Walk plus....

Thank you all for supporting Ruthie in her first AHA START! Heart Walk. Thank you to all our walkers. Thank you to all our non-walkers, yet supporters. Thank you to everyone who donated and/or bought a Pinkalicious t shirt. You are helping spread awareness and raise money for research.
We had a wonderful time walking, albeit in the rain. Ruthie really enjoyed the walk. She took a a little nap and woke up in time for the big, walking around Busch Stadium's field, finale. After the walk on the field, we took a family picture in our Pinkalicious gear.



(More pictures to follow, once I have a new camera cord. I loose those things like crazy! oops!)

In other Ruthie news, Ruthie had hit discovery mode. She is pulling up on EVERYTHING. She is eating ALL of her daily nutrition and medications by mouth. She has not used the tube in 3 and 1/2 weeks. She is cruising furniture and walking with finger- support. She is drinking from a sippy cup BY HERSELF. I could go on and on and on. (I may be a bit proud!?!)
We are currently using three in- home therapies a week. We have Occupational, Physical and Speech (for communication) therapies in our home once a week. We also go to Children's once a week for Speech therapy for food and eating guidance.
Ruthie has not had a biopsy OR seen the transplant team since her last biopsy, March 31st. Of course, I have spoken to the transplant team for 2 ear infections (referred to pediatrician) and medicine changes. I can not let them forget about Ruth;)

We are otherwise, happy healthy and living life. It has been wonderful going on walks, trying out the grass (not a big fan), swinging at the park and swimming. Yes! Swimming. Ruthie is a little water bug, as long as the sun is not too bright.
We are really enjoying ourselves this summer.

In up coming news, Ruthie has her one year heart anniversary and cath/biopsy on July 5th. Please keep her in your prayers during this time. We do not have any reason to believe anything is wrong, but it always makes me a little tense. Please, also, say a prayer for our donor family. This day also marks a sad anniversary for them. On that day, they lost their child and in turn, gave Ruthie life. I pray daily for this compassionate and amazing family.

Thank you for being a part of our lives and our hearts.

A Star is Born!

HEART WALK

This year we are participating in the American Heart Association's Start! Heart Walk.

It will be held in St. Louis, Missouri on May 14, 2011 at Busch Stadium!

We are very VERY excited to give back to the AHA as we create awareness of CHDs.

Our team name is Pinkalicious Warriors in honor of our heart hero, Ruthie!

Please join us as we walk for Hearts!

http://heartwalk.kintera.org/metrostlouis/pinkaliciouswarriors

Photo Shoot

My cousin,Becca, is an amazing photographer.
She took all of our wedding photos and she has taken many of Ruthie
When I asked her to snap some photos of Ruthie for Heart Month,
she did not hesitate to say, "YES!"

So here are a few of the 200 photos Becca took.

Standing with some help

Giggling... outside!

Playing with Mommy's hands

Loving my family

and my family loving on me.

We love our big girl.

Speaking of our BIG girl...
GREAT clinic day!
Ruthie is weighing in at 21lbs and 9 oz. (Up 13 oz since Jan 4th)
She is now 30 inches tall (That's right, another 3 inches taller since Jan 4th).
Her lungs and heart both look good:)
Dr. Cantar was pretty pleased with her progress.

Thank you so much for the prayers for our Clinic Day.
We felt them all day long!
We are SLCH transplant team free for another 6 weeks now! Whew!
We will have a biopsy/ heart cath and a pulmonary profusion test done in April.

Until then, Ruthie will do what she does best:
continue to laugh and be a happy "normal" 1 1/2 year old!

My heart will go on and on...

Good afternoon!

Mommy is a bit busier than usual this week. She is keeping me up to date on all my appointments, cleaning house and planning some outside play time since the weather has FINALLY warmed up.
So, she left me to the blogging...

I have been working out a lot lately.
I have been practicing standing.
I have been doing some sit-ups (all by myself).
I have been eating like a big girl (about 2 jars a day).
I have been playing with my doggie, Zoey.
I have been visiting Children's (for appointments only!)
And of course, I have been SMILING!
I love to smile. For some reason, it makes Mommy so happy to see me smile.

I do have a BIG day this week.
Mommy calls it Clinic Day, I call it play day!
I get to see Dr. Cantar, our main heart guy.

On Thursday, I will let them take my blood. (OUCH!)
I will let them take a picture (xray) of my chest. (CHEESE!)
I will be good during my EKG and echo (or so Mommy thinks).
And then I get to see some of my favorite people.
I hope Jamie and Kathleen are ready for me!
We haven't played peek-a-boo in a while:(
After my heart checks out and Dr. Cantar talks to my Mommy, I get to see my friends in the CICU.
My mommy will only take me up there if I am good.

So fingers crossed that I get to see my friends.

Oh I need to say THANK YOU to my cousin TJ, my aunt Coley and her friends down at Southeast Hospital for walking for hearts last Saturday.
I really wanted to go to the walk, but Mommy said next year when I am stronger.
Mommy told me TJ didn't want to take off his sticker that read,
" I am walking for:
RUTHIE!"
Aunt Coley said it is his FAVORITE sticker.
Thanks TJ! Us August kiddos have to stick together! (We share a bday month.)

Welp! Mommy is ready for some much needed outside time.
Off we go!

Thank you for the comments and prayers. Mommy loves to read what people write to me and her.

HUGS!

Love you!
Ruthie

Awareness

Awareness... understanding of, knowledge of, recognition of...
congenial heart defects

Today kicks of 2011's CHD Awareness Week.
I am aware that many of you know a little something about CHDs.
Whether you have gone in depth and gained knowledge of
how a complex little heart works or you have an understanding of
what a special heart brings to a family,
you all have given recognition of
CHDs.

I just want to say THANK YOU!
Thank you for sharing in our awareness of CHD.
Thank you for praying for our special hearted little girl and all of her heart friends.
Thank you for sharing her story and creating awareness.

So even though this sounds a bit odd,

HAPPY CHD AWARENESS WEEK!

Celebrate with us the joys of a different heart and lifestyle.



Remember the struggles and how our hearts ached.

This picture was taken 2/6/10. 3 days after being listed for a heart transplant.

Rejoice in our victories.

From blue hands...

To fabulous pink hands after tranplant


Last of all please continue to pray.
Pray for understanding of, knowledge of, recognition of special hearts and special families.


Ruthie thanks you from the very bottom of her brand new heart!

Happy CHD Awareness Week!

Pictures tell a better story

Ruth's tree

Ruthie was nominated by the St. Louis Childrens' Foundation to receive a "Donor Tree". Through this foundation, we met Noell Lopez and her boyfriend Phil. The two of them worked diligently to create this amazing tree. After the event Ruth's tree was delivered to our home.

Ruth's Christmas

Santa treated Ruthie like a princess this year.

Ruthie had a BLAST opening her new presents...

Or at least playing with the wrapping paper.
Silly girl!

Besides enjoying the holidays, Ruthie has been very busy.
Busy playing. Busy eating!
THAT"S RIGHT, EATING BY MOUTH!
She is up to a jar of baby food a day. We are still, of course, working on the drinking concept.
If it's bathwater, its fine; but give her milk in a cup and NO WAY!
(Maybe I sense a little bit of a 2 year old attitude coming on. That should be fun!)

Busy visiting ,our home away from home, Childrens:

*** Biopsy on Jan. 4th and NO SIGN OF REJECTION!
*** NEW! Speech therapy and a dietitian visit once a week
*** Pulmonary visit- Off the vest!

BUSY BEING A CHILD!


So busy, that Ruthie is wore out!

We are having a great time at home. We are all happy! We are all healthy!

We are looking forward to 2011! We cannot wait to get out and LIVE!