Ry had a clinic appt on the 4th. She did great as always. Her labs were just where they needed to be with very little change, her echo looked good and Dr. Fixler was happy with her growth. A couple of things worth noting:
- Her labwork showed that her BNP number indicated that her organs and body in general is in a happy place. At the time that Ry was sickest her BNP had risen to over 30,000. This indicated that her organs were on the brink of shutting down (or should have already shut down and sent her body into shock).  This is when we were immediately forced to act and move toward the placement of the VAD.  But at her appointment her BNP was 176!!  Isn't that amazing?? Wow!
- More big news!  After 2 years of a middle of the night med doses, we're all done!!  I'm ecstatic that I no longer have to set an alarm to get up and give Ry Sildenafil.  Actually, her echo showed that the pressures in her RV were so good that we were able to stop the Sildenafil all together!  This makes me the happiest to think that Ry is doing so well that after two years of this medication, her body is healed enough to be without it.  Discontinuing this medication also means we went from 5 dose times per day to THREE!  Yes, just three times a day!  It's amazing the progress she's made over the past 15 months.   So to all you parents reading this blog who are new recipients of an organ.  They aren't lying when the team says it will get better.  It's hard to believe you'll ever shed enough of your childs meds to be considered bearable, but it's true :)
We're just so super thankful that her health is continuing to hold up.  We've stayed in as much as we can and are trying to take real precautions to stay well.  The hospital is so overwhelmed with flu cases that they are taking over different departments just to handle the overflow.  PLEASE make sure you get your vacinations and stay in if your sick, it's for your own good, the good of your children and the good of those people who just can't afford to get sick.

I was going to include our football season in with the fall post, but realized I had way too many pictures to put all into one post.  We had the most incredible time with Rylynn at the football games this year.  And I must explain, it's not just the games.  It's spending the whole weekend in College Station tailgating with friends and family, letting Rylynn meet new friends while riding her scooter through the sea of other Aggie families and of course, game time.  These pictures say it all!  She LOVES being a part of it!

So here's what we have to show for a little trip to see the farms, Halloween, and Thanksgiving!

Farm Trip to the Panhandle
When Ry was 15 months old we were able to take a trip with Gilly's family to see his family's farms, where his Nana and Grandad grew up and his mom spent her summers.  We enjoyed the trip to Rotan and this year we decided to take another trip to Rotan and go back one more generation and see some of Nana's past in the Floydada area.  We were a little worried as to how well Ry would do in the car for such a long trip and we kept our expectations low.  But she did amazing!  We had lots of fun and it's great to learn about Gilly's family history.
We saw lots of cotton and took a trip to the famous Floydada pumpkin patch.






Trick or Treat
Rylynn wanted to be a princess this year, which was not at all surprising.  And of course she wanted to be Sleeping Beauty (the pink one), also not surprising.  We already have three pink princess dresses in our dress up box.  I just couldn't bring myself to go buy another one, but I also thought it would be so anticlimatic if I made her wear one she already owned.  Before this debacle, I swear I was going to conform to Gilly's request that I just buy Ry's halloween costume off the shelf this year instead of spending time creating and sewing something.  I have such little free time and I told myself, he was right.  And I swear if I could have talked her into a cupcake, duck or any of the other cute costumes I saw for sale I wouldn't have gone to the trouble... oh well, maybe next year!  But this year, I went to work again!  I think the dress, crown, and wand all came out pretty cute.  She wore the whole get up the entire week before and was so stinkin' excited that she got to wear it to school on Halloween.  We did a little trick or treating with some friends, but mainly enjoyed handing out candy.

Decorating a pumpkin

Preschool Party

Ry's Preschool Class

Turkey, Turkey

October 6 will always be a special day in our family.  It's weird to say that we celebrate on that day because although I feel that we should be happy for the blessing that we received on that day, I can't help but think of the grieving that Rylynn's donor family will do each year on that day more than most.  I just wish I could tell them how special their gift is and how deeply, deeply thankful we are.
This year we spent the day with just our parents and Rylynn's aunts and cousins.  We had dinner, let the kids play and just enjoyed our time together. 
My dear childhood friend's sister also gave us a wonderful gift this year.  She came to Lampasas and took family pictures for us.  You may remember that Cheri also came to Waco in March of 2011 to take our family photos too.  It was the most wonderful gift because Ry got very sick just weeks later and we were so thankful to have a set of beautiful pictures of her to remember her happy, beautiful smile.  Just after Ry's transplant, Cheri once again offered a session for us.  Because of one reason or another, it didn't happen until October, but it couldn't have been more perfect.  She brought her trusty assistant (and the birthday girl) Cheryl along and it was a great time.  Ry enjoyed seeing them and actually cooperated with lots of smiles.  Thanks girls, this was the best gift ever!  Here are a few pictures of our family from the professionals and that evening after dinner.









We wouldn't have made it through without the love and support of our family, we love them all so much!

And if you're interested, check out Cheri's work here.  She's so talented.
CThompson Photography

Rylynn began 3k at the beginning of September.  It's a five-day a week program for just three hours each morning.  I was very nervous about how she would do on so many levels. 
First of all, I worried about her dealing with the separation from me.  Since the time she got sick two years prior, I was with her constantly.  Now looking back, maybe that wasn't the best thing for either of us, but it was the only way I saw fit at the time.  I am lucky enough to work from home so even when she was not in the hospital, she was at home with me and a care taker.  And for so long, it was truly just me and her because Gilly was displaced from us in Dallas and Waco for much of the time.  Wow, looking back I sure hope we don't ever have to separate our family again.  That was the pits!
Second of all, I worried about her social character.  For all of her life we have restricted her interaction with other children.  She is lucky enough to have cousins that she adores and that are wonderful about getting together when they are all healthy, but the poor girl just never had the chance to be super social or just didn't feel well enough to leave my or Gilly's arms.
Third of all, I worried about her potty skills.  You may all remember that Ry was potty trained early (before her second birthday) and did great.  But of course we regressed for about a year when she was sick and then her meds made it EXTREMELY difficult to physically have control over her bowels.  And I'll say at the beginning of September I seriously doubted she could do it.  But luckily we backed off meds at her 11 month appointment during the first week of school and it made all the difference.  She's a total potty rock star!
And mostly, I worried and still worry about her health.  In fact, I kinda had a panic attach just days before sending her.  I called our transplant coordinator and asked one more time... "are you sure it's ok if we send her to school"?  They assured me it is ok and we'll just have to monitor her health to make sure she can manage all the germs.  We know she'll get sick easily, but we have to do all we can to find the balance that's right for Ry.  So we've asked the school to use sanitizer like crazy!  And we've gotten our flu shots.  So far only a cold and double ear infection in the first two months, but I know our real tough season is yet to come.  We're praying she can handle it.

And how, you ask is she doing?  A-mazing!  I want to warn you that I'm about to brag about our wonderful three year old.  If it annoys you when parents go on and on about their kids thinking they are exceptional even when they are doing things that most kids their age do, then you might want to get back to whatever it was you were doing.

So Ry was nervous about Gilly and I leaving her on the first day and there were lots of hugs and kisses goodbye and even a few tears, but I was very proud of her.  Each day got better with fewer goodbye kisses and by week two she was hopping out of the car to Ms D and walking down the hall all by herself to her room. (This is what they encourage of parents. It's an important transition for the kids.)
While Ry was already doing so well with colors, counting, letters, etc. here at home with Gilly and me, we've seen a HUGE change in her.  All day, every day, she wants to play school.  She wants to know what every word says.  She is no longer content pretending to read a book.  I have to actually tell her what it says.  She can spell her first name and last, she easily counts to 20, she knows all her colors and shapes, and she is associating letter sounds with words.  She is now beginning to write her letters and make shapes and she has worked really hard to write her name.  She is great at RYLY and then asks for help with the NN.  Below is her very first R, isn't it beautiful?  She surprised herself when she did it and now loves to mark everything with Rs!  I love it!



We talked with her teacher about her physical ability and asked to be kept up with how she develops.  In the first many weeks, Ry often stayed by Mrs. L's side and didn't get on the playscape much.  She said that it was intimidating to Ry when all the kids would climb up and run around while she would try to climb up on her hands and knees, but we know she is slowly improving and getting more confident.  Then, a few weeks ago we received this note!

Our summer was incredible!  We had so much fun and so many fun times, to be honest, I've kinda been dreading this long catch up blog.  However, I want to share.  And I want to document for Rylynn's sake. 
So here's a late summer wrap up in pictures.







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!

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...