And the winner is...

And other fun things from this nice long weekend.

As promised, Ry drew the winners for the raffle that was held to help raise money for her COTA fund.  Over 1000 tickets were sold!!  Thanks for all the work that was put into making this raffle a reality.  And thank you for all the donors who gave items, these were really cool prizes!

Ry loved having the task of selecting the tickets.

And here are the winners!

Ry and her Baby Reveille decided to watch Dora instead of the game... don't blame you!

We took Ry to the park for the first time since May!  Before getting sick, we went to the park once or twice every day to swing!  She was thrilled to see the swing set and did not want to get out!  I hope we have some more decent weather so I can take her again. 

Daddy assembling our terribly tiny, albeit an awesome Christmas tree!!

Ry seemed to like it :)

Our beautiful Christmas tree.  (Ry loves to use the word beautiful, so she continues to tell us about the beautiful Christmas tree!)  I must say she did a perfect job decorating it!



A Special Post

I just want to simply send out our hearts to a very special heart buddy of Rylynn's, and her family.  Although our family only knew Brooke during these past few months when she wasn't herself, I know she was a beautiful little girl who was so loved.  She and her family endured some very difficult times.  On Thursday morning, she went to be with the Lord.  I can't imagine the pain her mom and dad are feeling and can only ask that you pray for them during this difficult time.
They were all so sweet and I'm glad we had the chance to meet them.  We pray for sweet Brooke everyday and will keep on praying.

Picture Post

I've been working on this post a while.  These pictures date back a bit, but I wanted to get them up.  Enjoy.

Ry and her Pup. She's starting to shed lines.

Another visit by some of Ry's favorite friends.

October 18th: Only a couple of weeks post transplant and downstairs for some Pre-Halloween fun.

A late night trip around the ICU.

October 25th: Sweet sleepy head

October 26th: A trip down to see the fire fighters and the firetrucks.

Halloween fun with Ms. Laurie.

Ms. Patricia, Ry's massage therapist was also Dora!

So excited to see Big Bird at the carnival!

Ry's favorite!  The duck pond yielded lots of giggles and splashing with Ms. Chelsea and Ms. Tristeena.

My sweet Dora the Explorer

A much needed haircut, and Ry got the full experience. 

Thank you Ms. Leah!

Novemer 1st: Still not walking, but using her scooter to get stronger.

Making me ride "the bus" through the halls of the ICU twice a day.  Poor bus!

Ry loved using her dino mask twice a day.

Painting Ms. Katie's nails. Many of the nurses got a manicure from Ry.  Her specialty... the rainbow!

I have even more pics and intend to post again soon.  Hope you all are still enjoying your Thanksgiving weekend!

Give Thanks

Thanksgiving has always been a time of year to spend with family and laugh and love.  My life has been filled with blessings and each year I'm reminded how lucky I am.  
This year.  This day.  All I can think about is giving thanks.  It is the quietest, most uneventful Thanksgiving I've ever had, yet I will never forget it.  Gilly and I are here in our tiny hotel room enjoying the parade, a simple feast, naps and football.  It did not take hours to prepare our meal or hours to eat it, but it was a beautiful meal together at our table.  We are not surrounded by our loud crazy families that we love.  I miss them terribly and I miss staying up late to finish trying a new recipe to put on a cute new platter.  But our families love us and we'll see them soon and I can try new recipes next year.  This year its just us.  We have our amazing daughter here with us and that's something we will never take for granted.  She is doing wonderfully and has beaten every odd that she faced. 
I think back to last year.  On the day before Thanksgiving we met with our cardiologist in Austin and he confirmed what he had feared.  Ry seemed to be going into heart failure.  He knew we needed to get to Dallas right away.  Last years holiday season held so much uncertainty and helplessness.
As a parent you will do anything in the world for your child.  When it comes to having a sick little one, there is nothing you can do.  It's so frustrating.  You have to trust in God and trust in your medical team.  We did our best to do both.  We are truly blessed by the grace of God to have Rylynn still with us and at home.  All the love and support of our family and friends is what helped us through.  Today I'm thankful for each of you.  I wish I could personally thank each of you for your kindness.  No matter how big or how small your gestures each one means so much to us. 

I know Ry's future will hold many obstacles for us.  But we will take it one day at a time.  As we celebrate each minute with her it reminds me of the fellow heart friends who are spending their holidays in the ICU.  We pray every day that God grants them peace, strength and healing.  Please send a special prayer for them as well.

This has been a wonderful day.  We are so grateful for our blessings.  Happy Thanksgiving to you all!

Ry helping me prepare a Thanksgiving casserole

Our little Thanksgiving meal.  Prepared in our little kitchen.  Eaten at our little table.
It was wonderful :)

Just a Quick Note

I just wanted to let you all know we are doing wonderful!  Life outside the walls of the hospital have been great.  Ry's cath this week revealed some undesirable high wedge pressures.  This led us to a short stay in ICU while we got an echo, EKG, and chest Xray, but because all of these showed little to no change from her last, we were free to go after 5 hours.  It was just enough time for some of our favorite nurses to come by the room and say hi, but I was so relieved that we were able to go home.  We anxiously waited for biopsy results the next day.  This was the last piece of the puzzle and would tell us if the numbers were indicative of a rejection bout.  We were thrilled to find out yesterday that the biopsy came back ZERO.  Thank goodness.
So we're here at our "holiday house" enjoying lots of play time and resting.  I will post again soon with lots of pictures.  I have so many to share.
Thanks for all the prayers and I'm sorry for the delay in posting.  Once we get into a routine, I hope I find some time each day to get on the computer.  I miss sharing our fun times with you all.

Dear family and friends,

The past few months haven't been easy.  One really hard part of this journey has been having to be separated from our family and friends.  We've missed weddings, birthday parties, meeting newborn cousins, tailgating, and now holiday fun. 
As you all know, Rylynn's transplant means she will be very immuno suppressed for the next few months.  It gets better as time passes, but is something we'll always have to be conscience of.  Since her transplant we've had to restrict visitors even meaning that our siblings haven't seen Ry since she's been well. 
*This has been awful.  I wish Ry could see her aunts and play with her cousins.  I miss them all so much.  It's really, really hard being away from them.

But this is the responsible thing to do.  We have come a long ways and it's not worth risking her well-being.  We are still trying to decide what the holiday season will hold for our family of three and our much larger family too.

But back to the point of this blog.  I have to ask that we hold off on visitors until after the first of the year.  It means so much that many of our friends what to stop by and I'd give anything to catch up with you all, but again it's just not worth it.  So for now, keep sending texts and emails.  We will have to catch up another day, but appreciate knowing ya'll still love us :)

Very Short and VERY Sweet

We've had a very busy week filled with many great things.  We moved to the 8th floor on Monday just as we had hoped.  Ry did great and was excited about her new room. On Wednesday we headed to the OR to remove her PD Cath.  All went well and she recovered great with only a little discomfort.  Today we were able to remove her leads which monitor her heart rate and rhythm along with respiratory rate.  This is the first time in 3.5 months that she has not had 5 stickers attached to her chest and abdomen.  She cried for a while and refused to remove them for a few hours even though they weren't hooked up.  Then she insisted we keep the wires and not throw them in the trash.  But at bath time she allowed me to take them off.  So now we are only attached to her pulse ox monitor and a nasal cannula at night.  We're weaning that and she should be off of it by Saturday.  While all of this seems like sweet news, just wait it gets better...
Drum roll please....

We are being discharged on Sunday!!!

I'm nervous typing this out.  I don't know why, but I am.  Weird.

Wish us well, and send us prayers of safety and well being.  It's silly, but we'll be discharged on Sunday and back in clinic for a check up on Monday morning at 8am.  Oh well.  I'm so thrilled I just don't know what to say.

It may be a few days before you hear back from me.  It's going to be a busy couple of days here as we prepare for discharge.  We have to line up physical therapy, occupational therapy, respiratory therapy, medication delivery, oxygen, and so much more....

I also ask for a special prayer for Ry as we transition from our stay here in the hospital to our new temporary home just down the street.  She probably doesn't really remember life outside these walls.  She's a creature of habitat and likes consistency, this will be a huge change for her.  I'm sure she'll do great, but I know this won't be easy. 

Very excited and very tired.  I'll check back soon.