Thankfullness....

I know I have been MIA, but I felt since Thanksgiving is coming up I should do an update. We went to Minneapolis, last Wed thru Friday. It was a great trip. Amelia will not be officially 6 months till this Sunday the 27th. We had a great visit with Dr Wagner, he was very pleased with how well she looks and how well she has been doing. We did counts and they were about the same as they have been. Holding steady and I'll take that. She went to peds sedation and had her bone marrow biopsy and line removed. She did great with both of them. She was a bit nervous about the line coming out. I told her it would be a cinch, but after 6 months you become attached to it. Her biopsy went so smooth, one stick and a very small bandage and hardly any blood, much different compared to the last two that she had. She said I want that NP next time to do it! Line came out and she was fine with it being gone. I know though when we go to clinic next week she is going to hate getting stuck for her CBC and other counts.


While we were there we were able to catch up with Chloe who's BMT was just 3 days before Amelia's. We also got to catch up with Lisa, Sam's mom. Sam is undergoing his 2nd transplant. We are praying that this is the trick that Sammy needs!

Ty had his iron infusion on Friday, this time it is taking longer to kick in. He will go back to the doctor on Friday to see if he can be released to go back to work. Tomorrow we will be going to the cardiologist for the Echo. This is the cardiologist that saw Amelia when she was born and for about 3-4 years after. He will do the Echo right there in his office and we will get the results right then and there. I feel very confident that every thing will be fine but I need to be 100% that there are no deformities in there. I know we will probably never know why his heart rate decided to soar that day.

So even though we have a lot going on we have a lot to be thankful for. Among those a few are, God, Family, health and Love! May you all have a wonderfully blessed Thanksgiving!!
Blessings,
Kelly and family

Below are a few pictures from the last few weeks...
Nate in Action!



Chico...

Amelia and her best friend.....

and one of my favorites....

Confusion.....

Ok here is one where I pour my heart out to you. I'm going crazy with all this stuff with transplant. I thought things were settling down here with all of that. Just when I thought, in my mind, I get my frame of mind straight or as straight as mine can really be about doing things in Cincinnati, I get an e-mail tonight at like 8:45 from Dr W in Minnesota that states the following

Maybe we can talk next week. We need to try something else about coming here. I think the world of Stella Davies but I still feel we shouldn't give up yet. J

Grant it I was very excited to get this e-mail, because I have NEVER stopped praying for Minnesota. Minneapolis IS where we want to be. Dr Davies in Cincinnati is a really great and concerned doctor, and the hospital was nice too. But it's so hard to explain there is just a feeling that you have to have. As a mom, you just know what is right for you kids, I know this in my heart and in my stomach. I know that God is in ultimate control and His will shall be done no matter where you are. I'm also looking at comfort for the rest of the family, I know that her care is of the ut most importance and well I truly and have always truly felt that Minnesota is where she is going to get that, but with all this stupid insurance and crap, there just seemed to be no way around it all. Minnesota is truly our home away from home and even though there IS no place like home....for us it is as close as we can get with all the friends that we have made there and well truth be told the Ronald McDonald House there ROCKS!! From the staff to quality to the comfort it really is a home away from home, warm and inviting. The one in Cincinnati, just seemed so cold and sterile....
I'm just so confused and don't want to get my hopes up again to have them burned down again.

I hate FA, I hate that I have to make choices of care for my kids, I hate that they have to go through a bone marrow transplant that is NOT 100% guaranteed to work! and most of all I hate that my child/children may die way too damn young...to damn friggin' young to ever truly experience life!!! I don't want a pity party, but I have been so strong for so long that I just have to let it out and right now this is the only place that I can seem to do it, I wanna go out side and just scream till it hurts. I want to ride the damn horse not just keep climbing up and falling off the SOB!!!!!!

Cincinnati......

I will keep telling myself things happen for a reason, things happen for a reason, God is in control. THINGS HAPPEN FOR A REASON!

OK with that said....we are going to transplant in Cincinnati, Oh. The next month is going to be a complete whirl wind! We have never been there before so we don't know what to expect.
This is the email I got earlier today:
Kelly, as it appears that I cannot change the decision about the insurance coverage here, I need to get you to connect with Dr. Stella Davies at Cincinnati Children's to first verify insurance coverage there (preliminary review looked promising). If you indicate that it is OK, I will send her a medical summary on Amelia and my proposed treatment plan...I will also ask her office to connect with you to get things going. You will need to sign a form that transfers the donor search. They will get the form to you. They will keep me informed I am sure. Again, I'm sorry this has happened. Just know that I tried. John

At least he is sending over his proposed treatment plan...

Some have asked if I am OK with that, well to be honest it doesn't matter where we go because what ever is going to happen is going to happen weather we are in Minneapolis or Cincinnati! It is in Gods hands and His will, will be done! That is what I have to trust in.