Summer Fun

I just wanted to let everyone know that medically speaking, Ry has been doing great!  We had a heart check up a couple of weeks ago and things checked out great.  She had an echo which showed good function, her labs were all normal and no adjustments had to be made.  We will have her 9 month cath and biopsy in July and pray for more good results.  After so many heart check-ups it's weird that she was actually due for a visit to the pediatrician.  Our visit meant one vaccine (boo!), and an overall look at her growth and development.  I was thrilled that she is back on the chart and really making her way up it.  She was in the 55% for weight and 18% for height (which is amazing).  So it's great to know that if you didn't know about our past year of events, you may just look at her and think what a cute, happy little girl and nothing more dramatic than that.
So now that you have the medical report, here's what else we've been up to.

At our last appointment, we enjoyed seeing several of our heart friends.  They all were doing so well, but some have a long road ahead as they wait for a life-saving transplant.  It is encouraging to see their smiling faces though.  We also met a new friend.  A sweet blue-eyed boy who is being supported by the Berlin Heart while he waits for his heart.  Ry and he were able to play for a bit in the playroom together and I was able to meet his wonderful parents.  Even in the few minutes that we got to know them, you can tell how much they love their sweet boy.

Being at the hospital and seeing new friends and old friends alike, reminder me even more to continue to pray for all of them.

We also delivered some fun treats to our nurses for a late Happy Nurses Day.  I hope they liked them.

I had to make my first work trip down to Corpus early in May.  It was not easy on Ry, but she did great.  I was very proud of her for being away from me for so long.  She did have a set back after my trip as far as her separation anxiety.  It existed on a whole new level.  I'm hoping she will be ok when I leave again, this time I will not tell her where I'm going. Maybe if she doesn't know that I'm working, she won't have the fear of me being gone for long.  I hope it goes ok.

We had a very, very special visit to see a dear heart friend a couple of weeks ago.  Ry and I had a playdate with our friend Leah and her family.  We had a wonderful time!  We met Leah while both girls were waiting for transplant.  While their journeys were very, very different, they share an experience that few people can.  I hope they can continue to grow and know each other as time passes.  For now, I love having a mom that's close that has, and continues to go through similar things.  Here are a few pictures from our fun afternoon.

This past weekend we had a wonderfully normal family weekend.  We headed to Houston on Friday for an Astros game with Gilly's family!  We love that park and always have fun watching baseball together.  We were all excited that Junction Jack, the Astros mascot gave Ry a ball before the game!  I tried to take a picture, but was too close to actually get her and Jack in the picture.  You can see Gilly's hand and Ry's shoes if you look hard.
I think her absolute favorite part of the game was the ice cream in the pink helmet though.  She even got to put sprinkles on it!

Saturday we drove up to College Station.  It had been a year since Ry or I had been there.  We ate our favorite burgers and then headed up to campus to check out the rennovated MSC student center and just walk around a bit.  It was a great afternoon.

We then headed to a pool party for one of Ry's friends.  She had a great time and loved being in the pool with so many kids her age. 

We ended the weekend with a night spent at my parents' house.  Sunday was a quiet day here at the house.  Just the way I love it.  I unpacked bags and washed laundry while Gilly did yardwork and Ry napped.

My heart is filled with happiness beyond words right now.  Life is just perfect as I see it.  Next weekend we look forward to dinner with friends, a family reunion, an anniversary party and a movie with Ry that we're all looking forward to. :)

Catching Up

We've been so busy all spring long, I just haven't been able to find the time to post.  I think of doing it nearly every day, I just never get around to it.  So I'll keep this one short, but load you up on pictures to get you caught up.

Rodeo Austin - March 2012

Rodeo Austin - March 2012

We were lucky enough to get out twice for Rodeo Austin this year.  Ry enjoyed both nights!

 

My soon-to-be 3 year old!!

Attempting bluebonnet pictures... She was having more
fun dancing to the music in her head!



Easter 2012

Fresh Beat Band.  Don't be jealous

She was so excited to use her binoculars to see KiKi!

Eating at Phil's before the concert.

It seems lately that she's always in a hat, glasses, crazy shoes, a swimsuit, a tu-tu or
some other wild and crazy wardrobe piece. 

(See caption above!)  This is in Walmart with her Mimi!



I unfortunately don't have any pictures from our fun night at Disney on Ice, but Ry loved it!!!  She didn't even ask to go to the bathroom during the entire performance!  That means she was super captivated!!

Daddy's Bday!

So we celebrated another special birthday on Sunday!  It was Daddy's birthday!  Ry was just as happy to celebrate his big day.  We had a Blizzard cake, grilled burgers and did a little swimming. (Actually I was too chicken to get in the water!  I will admit it, I'm a wienie, but by looks on everyone's faces and the chattering teeth, I made the right choice!)

Tomorrow marks exactly one year since Ry was hospitalized for her increasingly deteriorating condition.  She came home with her "backpack" and things were not easy from that point on.  So this year we were just happy to be home together celebrating with Gilly and we have an optimistic look ahead. 
We love you Daddy!

Oh yeah, and I had a wonderful Mother's Day too!  Thank you Ry for teaching me so much!  You have changed my life :)
Who could resist this sassy little thing?

Birthday Party Hangover

Wow!  We had the best day Saturday.  There was lots of celebrating with our dearest family and friends.  I'm still suffering from birthday hangover, but am finally starting to feel rested up.  I think I have most of the confetti out of the house, all our rentals have been returned, and the cupcakes are almost completely eaten.  Now would be a great time to post pics and reminisce about the fun we had.  However, I do not yet have all my pictures compiled.  I'm begging party-goers to share their pictures with me because I was so busy enjoying the day, I took only a few pictures.
But I promise I'll get them together and post for all to see.  Until then, hope you all are having a great week.

Happy Birthday Rylynn!

We've had a wonderful day celebrating Rylynn's 3rd birthday.  It's been an emotional day for me and Gilly, one we didn't know if we'd be celebrating.  But WE ARE!  We started our day with donuts and a candle and ended with hot dogs and tator tots!  Throw in a lunch date with Gigi and Papa, some cake, a few presents and you've got yourself a great day for a three year old :)
She lights up anytime someone sings happy birthday to her and everytime someone tells her Happy Birthday, she kindly replies Happy Birthday to them!
As you all can imagine, we're happy beyond belief that we have her here with us to celebrate one more birthday.  We pray she has a wonderful year... her best year yet!

Early morning birthday donut. I think she's still half asleep!

Digging into her princess cake. She was one happy girl!

Taking baby RyRy down the slide.

Taking baby RyRy for a ride in her new wagon.

 

6 months ago

Here's Rylynn 6 months ago.

October 6, 2011

 And here is Rylynn today.

April 6, 2012

What a wonderful blessing her angel heart has been for her and our family.  Today as I sat in church and heard the Passion of the Lord, it meant more than it ever has in the past 32 years of my life.  I feel that death means something very different to me now that it ever has.  I also feel that the sacrifice and resurrection of Christ also has a different, maybe clearer, or maybe just different meaning to me.  It is such a special time of year and one that I hope finds a place in your heart.
I hope this Easter season is a very happy one for you and your family.  Stay tuned for easter pictures!!

Biopsy, Emotions and Hollywood

Things around here have been busy.  As it should be.
I can't wait to post some pictures of what we've been up to.  But I wanted to share our most recent trip to Dallas.
We had another cath and biopsy during this past week.  Our results were all favorable!  Ry's wedge pressures were down for a second time in a row.  We can now say they are trending down and we hope to see more of the same next month.  Biopsy results were a 1R which is also good.  I can't believe in just a few weeks it will have been 6 months since the transplant.
I often wonder if this crazy feeling will ever leave us.  The feeling you have each day you spend with her, thanking God for our blessings.  This is how we should all spend our lives, right?  Humbly, thanking God for each moment we have with her at home.  I hope I never lose this feeling, in twenty years I pray I'm still living each day this way. 
It leads me to also wonder if we'll always have this fear that it could all be taken away so quickly.  That is a part that I hate.  I know it's what breeds the humility that I desire, but sometimes I wish I could just lose the fear for a moment. 
I do think I have overcome the feeling of guilt a bit.  For a long time I wrestled with why we were blessed to have the outcome we did, when so many others are not so lucky.  And why the donor family had to suffer the loss of their child.  Why did we deserve to celebrate the life of our little girl?  But I've had to re mind myself that I am not meant to understand all of God's plan.  I must trust that He has a plan for us and we are doing our best to live it as He would want.  I can only pray for the healing of those who have lost their children.  My heart aches for them every day.
Soon after the transplant I had another overwhelming emotion.  It was this continuous burdening feeling that because we had truly been given this second chance that it meant we had to do something amazing.  Not just the kind of amazing that you hope for your kids or for yourself one day, but that we were meant to bring about world peace or stop hunger or something.  I felt I could never live up to the miracle we were given.  I know that God is not in the business of making deals.  He blessed us and only asks for love in return.
Do I hope that one day I can make a difference in the world, of course, but I don't think it was meant to obligate me for anything.  I think I just feel the motivation in my heart now more than before.
I don't know why I felt compelled to share this small piece of my emotional journey with you today, but maybe it will help someone reading this blog who might be going through something similar.  Either way, it just felt good to share. 

I have also failed to share the following links with you all and since I'm in a sharing kind of mood, I guess now is as good a time as any.  Many months back you may recall that I mentioned and I believe posted links to the Children's Med Documentary series that the hospital did.  We were a part of that series.  Without knowing the path of Rylynn's care or the outcome of her situation, the hospital asked us to be a part of the program.  We agreed and man did her story make for some drama!!  We appeared in most episodes for a few minutes as they shared Ry's story of waiting for a transplant while on the Berlin Heart.  But when the season ended last year, we were still waiting.  The hospital says that many folks actually sent correspondence to the hospital asking the outcome.  Because so many of the employees of the hospital watched the series it was funny to see how our little fan club grew.  It was probably also because when we did venture out through the hospital we were hard to miss with Big Blue and our entourage in tow!
Sooooo, now Season 2 is airing and Ry has had a great follow up to her story.  I am not sure, but I believe she will have one other small cip about her in the upcoming episodes because they did a little filming as we were discharged and a bit after.  But these two episodes are really unbelievable.  Seeing behind the doors into the OR was so hard for me.  Hope you enjoy!

Children's Med Dallas - Season 2 Episode 1

Children's Med Dallas - Season 2 Episode 2

Oh yeah, and feel free to look for last years episodes, Ry's visit from Miss Reveille and a few other videos about Ry's time at Children's.