As hard as I try not to dwell on the dates on the calender, it's so hard not to.  This week one year ago is when Ry was admitted to the ICU for our long journey.  Each day, each hour, meant difficult decisions, unbearable pain and fear, and overwhelming uncertainty. 
Last year, after what Gilly and I thought was a bad weekend for Ry, we agreed to call Dallas first thing Monday morning and take her in to be checked.  He had gone back to Lampasas to start his work week and Mom and I headed to Dallas.  I packed three days worth of clothes, knowing there was a good chance we'd have to increase her milrinone (which meant a three day stay).  This was worrisome because this would mean we would have maxed out her dosage and if she continued to worsen we'd have to soon turn to another form of therapy to support her.  We knew there was no easy next step.  We knew we were running out of time.  But again, we still had our hopes on an increased dose and the miracle of a donor heart before we had to worry about drastic measures.
As I pulled away from our duplex in Waco that morning, I never thought it'd be the last time.  I literally never went back.  I lived with Ry at the hospital for the next 118 days and nights. These are the numbers I try so hard not to dwell on, but somehow just can't stop.  And it makes me wonder about our dear donor family.  I'm sure they do the same thing.  They remember what they were doing a year ago with their sweet child.  Much like we are thankful each day comparing where we were a year ago, they are filled with sorrow thinking of their life through milestone calender dates. 
I have been so emotional this week, but know I just have to stop looking back and be thankful for our time now.  July 18th, 21st, September 14th, October 6th are some of the days I just can't forget. But I have to focus on remembering, but not dwelling.  That's the healthy balance for me.  And yes, sometimes I may lose it, but with a big hug from Gilly and some lovin' from Ry I can pull it together and thank God with a smile for our sweet girl.

This past week we've been having fun here at home.  Our town was having their annual summer festival.  We enjoyed more fireworks, some face painting and the street dance.  Ry loved it all and the weather was so nice we could really enjoy all the evening activities.  Here are some pics of our week of fun.

Had to have anything PINK

Headed down the block to see the fireworks on Spring Street

Could you get any sassier!?! Oh my!  Gilly and I have our hands full with this one!

Spring Ho 2012

The 6th of this month meant it has been 9 months since Rylynn's transplant.  She continues to do great and we were praying for nothing, but good news when we went in for her big check-up.  So this past week we headed to Dallas for a long day.  We were able to spend a little quality time with a few of her nurses on the night we drove in.  Ry was really happy to see them and even after they left she spend an hour pretending to call them all on the phone. 
I was absoultely dreading Tuesday because we weren't scheduled until third case in the cath lab and that meant we would not be heading back until 2:15.  That's a long time for an anxious little girl to be without food or water, but once again she amazed me and did just wonderful.  We checked in at 7:30 and began with labs, echo, and EKG.  I was glad it didn't take long, but we were done by 10:00 with too many hours to burn.  So luckily we were able to meet our sweet friend Chelsea in the playroom. It was a life-saver.  We played for a couple of hours then headed to check into pre-op.  Luckily everything was on time and we were saying good bye and handing her over right at 2:15.
By 4:00 we were able to meet her in recovery and Dr. Z gave us good news.  Her pressures measured the same as last time and they were pleased with that.  Our transplant team says her echo shows great heart function and later called to say her biopsy results were 1R.  We were so pleased by all of this.  Unexpectedly, we were even able to cut her steriod dose in half.  They hope to wean it by her annual cath/biopsy.  This makes Gilly and I so nervous, but excited as well.  We will have labs and an appointment over the next three months, but things are really getting spaced out. 

Ry clowning around before going to Cath Lab

Back in our hotel room.  "working"

 Over the past few months, the hospital has featured Ry's picture on a couple of billboards in North Dallas.  It was exciting to see her picture up and we hoped that her message might help the hospital and promote organ donation.  The billboards had recently been taken down, but when we got to the hospital on Tuesday morning, we were told that a new one went up right near the hospital.  So after our long day, we made a slight detour to see it.  Unfortunately, the sun was behind it and we couldn't get a great picture, there is one other picture that a friend had sent of one of the original two. 

Posing in front of Ry's billboard on Harry Hines

Ry's smiling face

It's that time of year.  Time to spend every free minute in the water to cool off from this awful heat we've been having.  When I was a kid, my dad built our swimming pool.  It was a lot of work, which we helped with, but it was where I have some of my best memories.  My sisters and I literally woke up each morning, put on our swimsuits, picked the garden, then jumped in for a morning swim.  Followed by lunch, more chores, and another quick swim.  We were then required to stay inside during the real heat of the day which was complete torture.  We had to actually watch TV or take a nap... yuk!!! Then as it began cooling off, we went out for more work either with Dad or just around the house (mind you we were still sporting our swim wear).  Then it was time for our evening swim.  We would swim until mom practically drug us out for dinner.  Oh those were the days...
This summer we have been lucky enough to let Ry have swim time.  And we've made the most of it.  Last summer she never once was able to get in the water because of her PICC line.  At age 2 1/2 it felt like such a terrible thing to have to give up, but honestly she didn't know any different.  It was Gilly and I who hated it the most.
But this year, nothing has stood in our way.  We've been to the city pool, Gigi's pool, Mimi's pool, the neighbor's pool, and the list goes on...
We began a few weeks ago with swim lessons.  Ry took to these much like she has any of her therapies.  She cried through the whole thing!  However, even through the tears, she obeyed Ms. Holland and held her breath every time she went under.  I've posted a few videos for your pleasure, it's pretty funny!



She is now doing wonderful and loves the water!  She still has a long way to go before I'd say she's swimming, but she's not afraid and tries really hard, she is doing great!

This summer, this moment, is truly the happiest I've ever been in my life.  I wake each morning with Gilly and Ry here together and we fall asleep each night just the same.  Ry is happy!  So happy!  And that makes me happy.
Sure there are still chores, bills and everyday things.  There are even those worries about the future of Rylynn's health that are very real and sometimes overwhelming.  There are days when I drive in my car and suddenly become overwhelmed with emotion that it makes me cry (usually because I'm thinking back about the days in the hospital or because I'm thinking of our dear donor family or because I'm thinking of our heart friends and their struggles).  But even through all these fears, I am happy!  We have a wonderful family and group of friends and through this journey we've made new friends that we're glad to know.  I am thankful for my life.  I am thankful for Rylynn and Gilly.  I am thankful for God's mercies and miracles.  May you all have the chance to experience true happiness.  If even for just a moment, because we never know how long these moments will last.

So I won't embarass ourselves by saying how long it's been since Gilly and I have had a real date night.  The kind where you sleep in a different town than your child.  The kind where you don't have to wake up at 3am for meds.
But this past weekend we had our chance!  We left for Ft. Worth early Saturday morning for a friend's wedding.  It was really strange leaving the house with an empty back seat, but we were looking forward to our short trip together.  We had great mexican food together out on a patio for lunch and a great evening celebrating with friends.  We were up bright and early headed home just 24 hours later, but we had a wonderful time! 


Ry did great while we were gone, but we did receive this text at about 8pm on Saturday night.  Mimi says they made a quick recovery as they began her bedtime routine, but Ry just wants to make sure she keeps everyone in check!

We have had to spend so much of Ry's life living away from Gilly.  It was never easy.  He missed his sweet girl and I know he never liked being away from her.  It hasn't taken these two long to make up for lost time though.  I love seeing how he can rouse her up!  He picks on her and she eats it up, but always know which buttons to push with him too.  And it's funny to see that she is getting her sense of humor from him, learning how to tease back.  Of course I'm not sure if this is a good thing or a bad thing!!
There is so much of Gilly in her.  From her beautiful hair, her eyebrows and her ear lobes, right down to her toenails she is Gilly through and through.  Maybe, just maybe one day she'll start to look a little like me, but for now she is her Daddy's girl.  And I like her like that!
We love you Daddy and are lucky to have you! 

Ry's Father's Day card

We didn't do anything spectacular for Father's Day this year, but we spent the day at home enjoying time playing with Daddy. Ry was worn out from a busy Saturday so she took a nice long nap.  Then we had a wonderful end to the day... it rained!  I told Gilly that was mine and Ry's special gift to him :)

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. :)

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!

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?

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.

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.

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!!

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.

I love to report that we've been too busy for me to sit down and post.  We've been busy outside, we been busy attending birthday parties, we've been busy with our everyday life.  And I literally am thankful for every moment of our crazy days.
Monday we were in Dallas for labs, Xray, etc.  We received a great report.  There were no major changes in her lab work so we stay the course.  A lot of people ask me about her medication doses.  That is one of the most common questions I get.  Ry is still on 28 doses of meds a day.  This is down by about 3 since we first transplanted.  She takes meds 6 times a day and there are 17 different medications.  She takes them wonderfully, I'm always proud of her!

Here's her daily med box.

We've been able to get out and about a little more lately as it seems most of our family and close friends have been healthy lately.  I want to say to all of those who we've run in to in the grocery store or at a party or restaurant, thanks for always respecting our space.  And to our friends who have let us know if they were a little under the weather so that we did not risk any exposure.  It's nice that folks remember and respect that Ry can't hug and kiss all over you, or that touching her isn't exactly ideal.  I immediately recognized and appreciate those who care enough to think about her health.  It has enabled us to venture out and to allow Ry to get out without her mask.  We of course never get far without another squirt of hand sanitizer!  Ry knows the drill and obliges. 
So here are some of the fun things we've been up to.  We were thrilled to be able to attend birthday parties for Ry's cousins.  Four of her five cousins have birthday's within 3 weeks of each other.  So we managed two parties in one weekend for all of them.  It was AWESOME to see Ry have so much fun with them.  She loves her cousins so much.  They are her best friends.
Here she is headed home on Sunday after an exhausting weekend of celebrations.  She's really tired, but just never lets up.  I foresee curfew problems with this one in the future...

That's my girl!  A (princess) lawnchair and a  cold beverage in the drink holder.

Life's been good.  We really are so incredibly blessed.  We are so thankful for our happy girl.