Just us

Well I suppose I should do a small update to let you all know that we are all still alive and well and still kicking!

Summer is rolling right along. It's not that bad. Amelia has to go to leap summer school till the end of the month. Then retake the test on the 28th, 29th and the 30. Which sadly means that we, again this year will miss Camp Sunshine on beautiful Lake Sebago in Maine! But she had a really rough school year with everything that was going on health wise and not know when or where transplant was going to be. Then to switch doctors and have her counts come back up. Which I am totally not complaining about. She along with the rest of us were totally disappointed about missing camp, but what's done is done.

Marshall has been doing great! He will be going into the 11th grade when school starts, which starts on the 9th of August. He is enjoying his summer and complaining because we won't get him his drivers license. Sadly I am not sure if and when he will get his license...he still has a slow response time due to a stroke and he has no peripheral vision on the right side and needs to learn how to compensate for it. Other than that he has been pretty good and enjoying summer and church...which I think is a wonderful thing!

Nate is Nate, of course. Still sticking fake snakes all over the place to give me the ebe jeebies!! he just finished a week at our church's Vacation Bible School and waiting for Amelia to finish summer school so he will have a playmate and we can go out to mamaw and papaws to spend the day swimming.
Both the boys have birthday's coming up in July....I still think that it is totally funny that all 4 of our children were due in JULY. Marshall b/d is the 20, our angle Seth's is the 25 and then Nate's is the 28th and Amelia's would have been around the 10th, but she was born so early.

Ty went back to work full duty and has been riding his motorbike and well doing pretty good with it, no pain any where. I of course make sure I say a little prayer every time I hear it crank up early in the morning. He just went to the doctor yesterday for his supposed last visit. Only to come home with orders for an ultra sound of his left calf to rule out a blood clot. OMG yes they suspect another blood clot...jeez.. but he also sad it might be some kind of muscle mass, so, although I am praying that it is nothing, I'm also hoping that it is the lesser of the two. So again he is still not fully released from the doctors care we have to go today for the ultra sound and then the doctor wants to see him back in 30 days. Unless it is a blood clot then he will call him in.

Life here, to say the least, is well, a little interesting one roller coaster ride after another. All I can do is get in, sit down, buckle up and hold on tight..........
Well the house is cool and quiet so I think I'm gonna go and enjoy it while it last!
Blessings,

Just an update....

yay!! I can now send short updates from my phone directly here! So now I won't ALWAYS have to have a computer!! I'm starting to be computer savvy, I think I rather like it that way!!

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!!!

Missing.....

I know I have been missing....
It has been some kinda crazy around here.
I promise though I will be back soon enough. There isn't much to update on...Amelia had her counts done again but unfortunately the good counts didn't last. her platelets are back down to 26, but we are not giving up on the fact that since they rose once they CAN do it again!!!! We are gearing up for summer around here, well the kids are, me not so much. I like routines and well we just don't have one in the summertime!!!!
Oh, Amelia was excited to hear that she gets another wish...
We were eating dinner the other night and the phone rang and it was a lady with the wish endowment fund ( I think that is what she said) and I told her that we had already went to Disney with Make-a-Wish and she said that didn't matter to their organization, she said she still gets one through them and she can go any where she wants and if she wants to go back to Disney that is fine with them, or anything else she wishes for!!! She is so excited...she is thinking she might want to go back to Disney, like for Thanksgiving...I talked to the lady at the wish foundation and said that if we had to go to transplant before then she would have things in place so that if we need to go we could go!
Well it's getting late and my little man needs me to put him to bed.
But I wanted to wish all of the mom's out there that read this blog a very Happy Mothers day to ya!!!!