Riley's Road: The Unspoken

I will first ask your forgiveness and understanding for what I write today. In a great attempt to protect the privacy of our Riley girl, I will refrain from being awfully specific on certain things. I pray you can understand and continue to just love her, just love her.

For the first time ever, we gathered enough sweat in the suctions yesterday to perform the CF test. I think it was daddy's touch....he held her and loved her for the entire very long process and it worked:) Thankfully, he was able to come to this appointment. We will know on Friday what the results are. I'm praying that lab techs and doctors at Denver Children's and National Jewish will have clear results and be firm in whatever the outcome is.

Riley has a feeding eval very early next week and speech, OT and PT evals the following week. After all evals are completed we will know what types of therapies (the intensity of them) and how often she will need them. As of now we are looking at 6 different therapies at least twice a week. I have no idea how it will work and am even more unclear as to how it will work once the deployment has begun. I truly believe her doc's are working hard to help. We are still waiting on her genetics appointment as well as her neurological appointments and the reflux/voice box surgery to be scheduled.

We are dealing with some neurological issues, heavy ones. The behavioral health therapists really heard us yesterday, she understood better than any doctor thus far, she really put some pieces together for us. Sadly, her news makes such sense to us. Our hearts are broken, so broken today. Why did I pray for answers? Would I be better not knowing? It seems I do ok for a few days and then something more awful comes about. The appointment with the behavioral health therapist was one I debated on canceling for a week but really felt the Lord speaking to me to keep it, that there would be connections made, and there was. There are no true tests, but rather watching Riley and knowing her, being an expert in this field, a fellow believer and we finally have some answers....yet there are many more we need.

Our girl is so much more than an opinion, a diagnosis, an appointment. She is a child, a very loved child, a child who has been thru so much in her 2 yrs of life. A child of strength who radiates the love of Christ. She is a picture of perseverance, of determination.

Please continue your prayers for her, for us. As I usually say, we need them more than ever.