Christmas 2010

Aside from being away from our parents' homes this year for Christmas, we had a wonderful Christmas! Instead of us going to them, our families came here!! On the 23rd my mom, dad, sisters, bro-in-law, and nieces were all here to help us celebrate. We did not have quite as much food as my mom always seems to have, but it was fun to host the family and cook for them. The girls were all so excited to open presents and before long Rylynn really had the hang of it. The biggest problem was that after opening something she'd want to play with it and didn't want to move on to the next one. I love my family all very much and am glad they came to celebrate with us. We finished the night off with the little girls having a slumber party on the floor, and the rest of us playing some not-so-intense games of Scrabble. Here are a few pics from our crazy bunch.

Tyler and Sydney had us play their version of 20 questions.

We loved the drawings they did on all our little pieces of paper.

Jessica and Rebecca brought this ridiculously huge canister of cheeseballs. Rylynn was beside herself!

These two, LOVE Dora! What a perfect slumber party with your cousin!!

It was weird to have only our family of three together for Christmas Eve, but we were thankful to be together. We spent the day napping and playing and then went to church. Rylynn was not in the mood to sit quietly. (She's been doing so good on Sunday mornings, but this was not her best showing.) She wanted to talk the entire time! Luckily it was the children's mass so we weren't the only ones with a crazy kid! After church we ate and opened presents.

Isn't she a doll in her dress and fancy new shoes?

I do have to say, that Rylynn was quite funny with the presents under the tree. As I wrapped them...

She stood on them...

She sat on them...

She climbed on them...

She even slept on them...

After Ry was fast asleep Gilly and I waited for Santa to make his special delivery and then we got to work assembling what he brought. We were up till 2:00 working on this thing, but she was thrilled when she saw what she had gotten on Christmas morning!

She loves her kitchen! We've been busy making cupcakes (thank you Aunt Caity) and so much more!

Later that afternoon, we had all of Gilly's sisters, bro-in-law, nephew and parents over to celebrate. We ate some more, played some more, and opened more presents! Mimi and Papi got Rylynn a Barbie Jeep and her cousin Jackson a JD Gator. They both enjoy playing the radio, but aren't too sure about making it go. I know by spring they'll be all over the place in these things!! We had a great time with all of them and were so happy we had everyone together.

Look out Jackson, I'm not sure you should let Ry take the wheel!!

It's been nice to have sisters and sister-in-laws coming over to spend time with Rylynn while they've had some time off. Ry has really enjoyed it, as have I. We even had a visit from her Nana. (We missed going to uvalde this year, but hope we'll be back by next year.)

Nana spoiled Rylynn rotten during her visit!

We are looking forward to a spectacular 2011! Keep us in your prayers and we'll continue to keep you all posted on our happenings.

With Love. . .

Home Sweet Duplex!

This is the Dupe!!

Wow, what a busy three weeks we've had since I've last blogged. I apologize for the delay. There are a lot of things that I didn't get to in the last few weeks that I usually enjoy this time of year... Christmas cards, going out to see Christmas lights, the usual baking (although I still managed to do enough eating), lots of Christmas shopping and decorating the house with my many tubs of lights, wreaths, etc. This year we managed a last minute tree, two nativity scenes and a wreath on the front door. At least clean-up will be a cinch.

I will post all about Christmas in a bit, but let me get to the rest of it first.

Gilly, Rylynn and I are officially living in Hewitt (on the edge of Waco). We have found a nice little duplex to rent and we are unpacked and really feeling at home. Unfortunately Gilly is having to split his time with us here and out at the ranch a few nights a week, but it's becoming our new normal and will all work out. We are lucky to have leased out our home in Lampasas to a family with three girls. We hope they enjoy the house as much as we did and we look forward to moving back one day.

For now, Rylynn is officially listed for a heart transplant in the 2 category. Being a 2 is good news because that means she is still relatively healthy, but it also means that we are the lowest priority group. Her PRA numbers came back about midline and her blood type makes her a good candidate. Based on all the information that the team put together, they predict that our wait could be about 12-15 months. This is assuming that Ry stays pretty healthy, continues to eat and grow, and we don't encounter any other major obstacles. We will work to keep her from being exposed to anything that could jeopardize her chances for that heart. If Ry were to contract any type of cold, stomach bug, etc. she would be ineligible for a transplant until completely healthy again.

We know the call can come at anytime and although the odds are that we won't be getting "the" phone call for a while, it's on your mind at all times. We are trying to keep a bag packed and be ready at any moment. It's taking some getting used, but I'm sure as time passes it will not consume our thoughts every minute. For now we just need your continued prayers that Rylynn can stay strong and healthy until our turn comes.

The Wild Woman on the Eighth Floor!

Here are some pictures from our week in the hospital. Rylynn was such a trooper!

This was the first night. She had no idea she was in a hospital yet.

She was crazy all night and refused to put a shirt on for some reason! :)

This was Ry's favorite place in the playroom. She loved the kitchen! She sure hopes Santa brings her one for Christmas!!

This is a gingerbread house that Rylynn got to help decorate one afternoon.

She really just wanted to eat each piece of candy.

Pictures from her cousins.

Thank you Tyler, Sydney, and Shelby. They made Ry feel much better!

So happy to be home!

The Riojas clan is finally back in Lampasas, if even just for a bit! We got home late Saturday afternoon and have spent the past two days just enjoying time with Rylynn. Today it's back to work and beginning our move. We hope to have something in Waco in the next couple of days so we can begin to move the neccessities for Ry and I. Gilly will be able to pack up the rest over the next month. As soon as we officially have a place, we'll call the hospital and Rylynn will be listed. We hope to accomplish all of this by the end of the week.
I don't have any new information to share. We are still waiting to receive her PRA number back and should know today. We are praying for low numbers.
I have lots to get done today so I will have to leave you for now. Thanks for following and thanks for all the prayers and kind calls. We love you all!
With love . . .

What a week!

Saturday can not get here soon enough! We have all had about enough of this hospital room by now. Everyone here is doing their best to keep Ry content, but we're all about to go crazy!
I apologize for not posting sooner, but our days have been filled with tests, meetings, exams, labs, Xrays, MRIs and the list goes on. And when we're not busy with something, it's a full time job to try to distract Ry and keep her occuppied. We are lucky that she has some mobility with her monitoring devices, we're able to walk around the unit and hit the playroom twice a day which helps.
So here's a recap of our week since Tuesday and where we are now. Wednesday Ry had her heart cath which showed low pressures in her heart and lungs which is good with a struggling heart. Wednesday afternoon we were also officially approved by insurance to start a pre-transplant work up. As soon as the paperwork went through, Gilly and I sat down with the transplant team. (And they do have an entire team, but I'll get to that later.) We received some very grave statistics and also some inspiring stories, but no matter how you slice this it's not going to be easy for Rylynn especially and for Gilly and I as well. The transplant is our only option, but as they have told us time and time again "a transplant trades one set of problems for another set of problems", but our goal is to give Rylynn the best quality of life that we can. With a new heart she should be able to live a fairly normal life. Yes, the heart will grow with her. No, it won't last forever. Yes, we will ALWAYS have to worry about rejection. Yes, she will have to take meds everyday for the rest of her life. (Those are a few of the questions we get a lot.)
The transplant Docs also told us the one thing we were very afraid of... Lampasas is too far from Dallas to be listed. Rylynn must be within two hours of this hospital at all times from the moment she is listed. We were first told this would be today, but last night they said we have till next week. This is best news ever! It's hard enough to know your daughter has a failing heart and we're now waiting at the mercy of a matched donor, but we will also be uprooted and making some difficult moves :(
So that was Wednesday.
Yesterday was filled with conferences. We had to meet with child-life specialists, psychologists, social workers, financial counselors, nuerologists and more. Each one taking about an hour to evaluate Rylynn and interview Gilly and I, what a loooonnnngggg day! Today Ry is having an MRI, labs, and a chest Xray. She hasn't eaten or drinkin since last night and we have 3 more hours to go! Pray for us this morning!
We're hoping once we knock out the last few items that they will let us go tomorrow!! We will be headed home to regroup and start packing up. Ry and I will most likely be moving to Waco, we'll have to lease out our house and Gilly will be stuck splitting time with us in Waco and out at the ranch. It's heart-breaking that we had finally been settled in the home we wanted Rylynn to grow up in and had the perfect yard for her to run and play and now we have to suddenly (although hopefully temporarily) leave behind. It's heart-breaking that Rylynn will not see the horses and cows. It's heart-breaking that Rylynn will not get to visit her Gi-Gi and Pa-Pa or Mi-Mi and Papi in their homes. Augghhh... this is so unfair to her.
That's all I can write for now...

Here are the prayers we are asking for:
Pray that Rylynn's heart handles her sedation ok today.
Pray that her PRA numbers come back favorable today.
Pray for Rylynn's happiness.
Pray for Gilly and my strength.

With love. . .