Anyway, now that I have a few hours on my hand I thought I would do a quick little update on the happenings in Bennettville...
This week the kids are out of school for Spring/Easter break. Today is Marshall's IVIG day and we are sitting for 4 to 5 hours for his infusion. My dad and mom are watching the other two. Thankfully he is doing pretty good, we finally got him to the ENT who put him on some super duper Antibiotics that cleared his sinuses up, and I am sure the predinsone helped too.
Amelia is doing pretty good. We haven't gotten counts yet we are waiting to do all of that next week when we are in Cincinnati. Yep we, or rather I am leaving with her and Nate next Monday to head to Cincinnati...say a little prayer for me, I will be driving! Ty is staying home to work and Marshall has to stay for school as the following week will be LEAP testing. Not sure what he has but I know that he has some important test coming us. We plan on driving the first day to about Nashville and then the next day onto Cincinnati. Wednesday we have full day with doctors and then Thursday much of the same, Amelia will need prayers that day as they plan on doing a GFR kidney functioning test and well they need an IV for that and if you have followed us in the past you know how freaking hard it is to get an IV started on her. I have already informed them about how hard she is to find a vein and that you need to have the best of the best there to get it started!!!! So I know we will both be needing prayer that day, because when it comes to it I have very few patients with them poking and searching for it...there's only so much screaming and crying I can handle they only get three chances and then that is it!!!
Friday we will be driving straight home no stopping for the night, which I don't mind as I know how to get home in the dark. I just hate driving someplace new and not knowing where I am going.
Ty returns to the doctor tomorrow, he is hoping that they release him full duty....it is killing us having him light duty and not being able to work details and having to spend almost 60 bucks a week in a truck for him to get back and forth to work. Not to mention he is totally bored to death sitting in main control. He's use to being out side.
I am not sure what we will find out on this trip to meet the new doctor. I am sure we will discuss transplant and when we should proceeded with it. I am still praying for that miracle. I am truly thankful that her counts have been pretty good for an FA patient. Her platelets have held for a month at 26-24, her hemoglobin has been between 9.6 to 10.5 so that is pretty good and her white cells have been good too at 5.3. We won't have them done again till we are in Cincinnati.
I'm not sure what I want from this meeting. I have prayed for Gods guidance and I wasn't and really am still not sure how I feel about androgen's. I know some people have had great out comes with them. Marshall was on them and of course they did nothing for his platelets but they helped his hgb(hemoglobin). I know that Dr Wagner was against them as he didn't know what they do to the out come of a transplant. Yes Marshall was fine but being that he was on them for so long it brought the out come percentage down a good bit. I'm just confused at the decision a head. That's why I am praying to God to help me make the right one for her. This is one of the hardest things in life I have ever had to do. I hate that I am the one making life and death decisions...NO parent should ever have to do this!!!! It is just not fair. I just know that it is my decision to make and that I have to do it and feel 100% comfortable with that decision there is no go backs or do overs! That is why I am weighing my options and letting God steer my thinking. Obviously there is a reason that we are at Cincinnati Children's, it is He who has gotten us here so far so I feel that we are in His hand and I am putting my Faith in Him.
Well that's all I got for now, I need to run and get Marshall some lunch so....
I'll try to update more before we leave if not you will be getting quick updates from me from my phone since I just learned how to do that!!!
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