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. . .