Decision Made

Decision Made

Well today we give our ok to go ahead with radiation and chemo and the process should start next Monday. Six weeks of daily radiation Monday thru Friday. It will be a long process. Each day we will have to get up early and go to day surgery and hour before radiation. They then will put Kylee to sleep transfer her over to the hospital that does the radiation (Children's Hospital in Milwaukee does not do it but a hospital connected to Children's does). The radiation will take about 20 minutes and then she will go to recovery and once she eats she can go back to the Ronald McDonald House (we are 2 hours from Milwaukee). Then we will start the process all over again the next day. We are hoping to break up the 6 weeks between me and my parents and nurses as for one I don't have 6 weeks to take off of work until the first of the year and I have already used much of my FMLA and we have a long road ahead of us before the first of the year. Plus it will get to me a long road being down there. It is so nice to have such wonderful parents, nurses and a husband who will stay home and work and take care of the 2 boys. We have to go down some time this week to get her "prepared" for the radiation. My mind has not even moved on to chemo but I guess that is where the Dr's are more concerned about Kylee. She has so many other health issues that they are not sure how she will handle the chemo. As always one step at a time....lets get thru the radiation and then move on to chemo.

New Equipment

Before Kylee got sick we had ordered her some new equipment. Well it is in and she is finally well enough to be using it and I love them. We got her a new chair called a Nandu. It is so nice. It helps her to work on her upper body as it only supports her lower back. You can also adjust the height of it so she can sit at a little table. Then we got a tumbleform wedge that you strap her into and she has to work on staying on her tummy and pushing up with her arms. Last of all our good friend Ashley Murphy sent us a sitting device called a sit u up and it is shaped like a "c" and also helps her work on her sitting. Could you tell that sitting was a goal for the age of 4? I guess I can cut her a slack with everything that has been going on :)

Pictures

We got our family pictures taken yesterday. Can you believe that we haven't had a family picture taken in 4 years? Yes...that means no family picture with Kylee or Keegan and after yesterday I remember why that is. It was hard work. Keegan just wanted to run. If the lady said sit he would stand if she said stand he would sit. Plus it was so hot. I am hoping for at least one good family picture and 1 good picture of Kylee and then I told Jason we are not doing it again until Collin gets married.

Happy Girl

To end on a good note. Princess Kylee has been such a happy girl. She just smiles and laughs and we are really enjoying every minute with her. Everytime I see her smile it makes me want to cry because that is all I want....I just want her to be happy and enjoying her life.