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.