It's strange to think we're almost three months post transplant. Gilly and I sat in the kitchen the other evening thinking, "wow, so this is what it's like to really have your prayers answered." We are not oblivious to the reality that we will spend much of Rylynn's life still facing numerous medical challenges. There will be ups and downs for the rest of her life, but what we do know is that we will cherish every bit of the ride and be sure to soak in the ups. It's amazing to see how Rylynn has readjusted to life here at home with little hesitation or question. I know at her age it's easier for her to just accept her daily situation without question of why, how or what lies ahead, but we're super proud of how well she has handled things.
We went back up to Dallas last week for a VERY long appointment on Thursday. It included a heart cath and biopsy, echo, chest Xray, EKG and lab work. Ry received a good report all around. Her pressures did not change much since her cath two weeks ago, but we'll continue to watch how they trend. Her biopsy results came back as a 1R, which is excellent and everything else came back looking good. It winded up being an 11 hour day on campus and then a 3 hour drive home. I was so thankful Gilly came with us. Ry did amazing though. We were both so proud of her. We are headed back to Dallas for an appointment tomorrow. Luckily this time it should be rather short if all goes well. Throughout the month of January, we'll still be seen once a week, but if things continue in the right direction we'll eventually be seen every other week. Gotta tell you, once a week is so nice compared to twice a week that we were seen for the first few months... not that we don't love our Dallas peeps!!
So here's what we've been up to. Enjoy these pics of our happy girl!
First she got right to work with Daddy. We went to see the horses one day and then spent another beautiful afternoon out feeding the cows with Daddy. She was able to do all her favorite things, throw feed out, drive the truck and have a picnic lunch with him at work.
Ry's also been busy helping mommy work at our house during the day. Unfortunately, the renters did a real number on our house and landscaping while we were gone for the past year. It was really heart-breaking to see the house that we had just finished working so hard on, in such a disgusting state. But we've been busy again trying to get things prepared and repaired so we can get back in it as soon as possible.
I also should report that Ry is walking and dancing more than ever before! I can't wait to have her re-evaluated by the therapists. In just the past three weeks that she's been walking she has made enourmous strides! She's not running yet, but her little feet move so fast sometimes, she only lacks the spring in her step.
Oh yeah, here's a funny story. The day after we returned home. Ry was being super silly and spinning in circles on the living room rug here at the ranch house. She of course then bit the dust as her still slightly uncoordinated feet got twisted. As she pulled herself up from the floor you could already see the big black eye she had. Gilly and I thought, "oh great, we've been home less than 24 hours and she has a black eye!" It really turned into a shiner to be proud of :) In fact, in a couple of days she has discoloring under both of her eyes (just in time for Christmas pictures). This hasn't been her last fall, but that's just part of getting her legs back under her. Luckily, it hasn't slowed her down much, now she knows it's ok to fall sometimes, she brushes it off and keeps going.
This is all I have time for this morning, because I've got to get meds drawn before my party animal wakes up. I will try to get back on real soon and post our pictures of our Christmas fun. Take care and keep checking in on us!!
9 comments:
What a wonderful post! Thanks for sharing so much with us all! It is a blessing for those of us on the sidelines to get a glimpse of your joy! Beautiful pictures, too! Thanks so, so much for sharing! You three will always be in our prayers!
Love those pics of Ry and Gilly - they both look so happy!!! Thanks for sharing all of God's goodness and we will continue to pray for his protection and healing for Ry
Our love,
Linda and family
WOW! Blessings to all:)
Thanks for sharing.
so, so wonderful! That wonderful smile on Rylynn's face just warms my heart. Its amazing to think back to a few months ago, how different things were. God is so good. I just can't find the words. We are SO happy for Ry's continued GREAT health and how amazing she is. May God continue to shower your lovely family with blessings. We are blessed to be able to share this journey with you and help us all keep perspective in this crazy world we live in.
thanks for taking the time to tell us about all the fun ya'll 'been having! :)
Hugs!
What a journey. We will all be here to enjoy the ups and to pray that the downs are minimal and bearable. Thanks for sharing your story with us. It is joyous to see you all home and healthy.
WONDERFUL!
I have been waiting to see all kinds of pics of Ry having fun. And I don't blame you one bit for not wanting to sit down and do it. So glad that she's doing so well and enjoying her time home. We love getting updates and seeing pics Gilly posts on FB. He texted Ryan that you make him watch America's Funniest Home Videos..we love that show too. Great minds think alike!!
Glad Ry is having fun doing all her favorite things.
I love those BIG baby blue eyes! We love all three of you guys.
Love,
Shane and Melissa Cunningham
Ah, what IS it about those pics of Gilly kissing Ry and then her holding onto his finger....TEAR JERKERS! You guys make our hearts smile! We are so glad you're back! xoDusty&Cindy
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