We have been waiting for the genetic tests result which would confirm the type of syndrome Brooke has. Well it came back negative. So the "syndrome" we thought she had she doesn't. She still has SCIDS and was born with out an immune system, but we may never know what type of "SCIDS" it is. They had saved some of her blood from before transplant and they are trying to find a lab that will work with them and "think out of the box" to identify what Brooke's actual "syndrome" is. We call it the "Brookie syndrome." Being a nurse I like to have a diagnosis and then a treatment plan. So this was a little hard to swallow, but one of Steve's friends said, "who cares, what they did is working, that's all that matters." In the end, that is so true. Brooke's liver enzymes and white blood count are normal. We haven't seen normal in FOREVER!!! She's eating some and getting stronger. YEAH!! They are also still turning her tube feedings up and decreasing her TPN.
Our house is being "prepared" for her to come home. Brent, Mark, Scott, Jon and my dad are "preparing" our home to be mold free. That brings some fear to Steve and I because we have given them control! (Steve and I like control :) But we have about all we can handle with our lives right now. We have the most confidence in them and we know they will do what's best for Brookie. Thanks guys!! You are the best!!!
3 comments:
I will admit that the thought of brooke comming home brought tears to my eyes. The kids and i celebrated you posting and hope that this current trnd continues. You are all still in our thoughts and prayers. Love Mike, Pat, And the kids
What wonderful news: there really is no place like home. My heart is smiling.
I started crying when I was reading your update this morning on our church web site. I am so happy to hear that you can start making plans to take Brooke home. Wayne and I are so happy for your family. What a blessing! Praise God that he hears and answers prayer!!! We will continue to pray for you all.
Post a Comment