Finally a post!

I hope I still have a few followers out there who will happen to see that I've finally posted.  I don't blame you all if you have given up on us, but you should stay tuned because this year I promise to get back in the habit of blogging.  I have always enjoyed keeping up with all of Rylynn's happenings here and I love to look back through my posts as if flipping through the pages of her scrapbook.  So I do intend to catch up and hopefully stay caught up.
Here's my excuse explanation of why there was such a pause.  When I left off at the end of July, I quickly had so many photos and good things to report about, but then September hit me like a ton of bricks.  I'm not sure why the emotions of previous year came flooding in like they did, but it was awful.  I didn't really feel like writing about all the things I was feeling.  It was in Septemeber 2011 that we almost lost Ry.  I don't know how to describe the wave of pain and guilt that I was feeling.  I was feeling many things because of what we had gone through, but mainly there was so much pain and guilt for the donor family and for those who had lost their precious heart babies.  Gilly was so supportive and helped me through it.  It was his love and Rylynn's presence that got me through. 
The weird thing is that once October came around and Rylynn's heart one year transplanniversary was here, I was very at peace with things.  My heart was happy.  I was grateful.
I also think I had a bit of a revelation within myself about our tough times in the hospital and even before.  I was told over and over how strong I was and how folks admired my positive attitude.  Guess what... the real truth is that I'm pretty sure I spent all that time more or less in denial.  Or atleast to those around me.  I think about this alot.  I wonder if it was God's way of helping me help Ry through her tough times.  I could not afford to let her see defeat.  I had to work everyday to wake up with a smile, find her favorite cartoon and talk about how much fun we'd have in therapy.  All the while I was petrified inside.  I had to push forward.  I feel like it will take me years to work through and continue to unravel the emotions, and I know one day soon we'll have to explore Rylynn's feelings too.  I pray that Gilly and I will be prepared for that.
So enough with the deep thoughts.  Let's look at what we've been up to!  I can't wait to share!

COMING SOON!!

I finally have had some time to blog, the problem is that I have a lot of catching up to do!  So be patient, but it won't be long and you'll have lots of reading to do.  Several posts are coming soon...

Numbers on the Calender

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! 

This was Ry chillin in her princess chair waiting for the live music to start. Once it did, she danced the night away!



Spring Ho 2012



Clowning around in Dallas

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

Firecracker, Firecracker, BoomBoomBoom

Happy Fourth of July!!

Swimming 101

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!

Here she is on the first day

Just a few days later

And on her last day

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.

Date Night

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!