Tuesday, October 4, 2011

Minnesota Appt., etc.

Macy's Minnesota appt. is coming up soon.  Can't believe it is almost here already.  We were not able to get flights there because they are all booked....crazy huh (unless we want 2 or 3 layovers....not ideal with a 1 year old).  So we will have to drive the 20 hour round trip.  We will be meeting with Dr. Wagner whom is one of the best of the best when it comes to experts on FA.  It will be nice to meet with someone that can answer some of my questions on cancer trends, the latest statistics/survival rates of bone marrow transplants for FA, etc.  There are some new clinical trials going on regarding new drugs to use instead of chemo/radiation before doing the transplant.  One of the issues is that kids with FA do not have repair pathways to repair damage from radiation and toxins that 'normal' people have.  So when they have their transplants it increases their cancer risk even more than it is already.  If they can "perfect" using other methods like they are trying in the clinical trials; it can help prolong the onset of cancer for these kids; which would be wonderful.  I really hope this happens before it is time for Macy's transplant.

I think we are done with feeding therapy for good.  I have called the hospital a few times trying to figure some things out for insurance, and they never call me back.  I don't have time to keep calling them so I figure we are done.  Macy is doing really well, and I have learned all the skills I need to progress her eating/drinking to where it needs to be to get her G tube taken out.  It will still take some time, but I am confident we will be able to do it on our own.

Speaking of her G tube.  She goes in on Thursday to get her button replaced.  She had the surgery in the beginning of July and it takes 3 months for the stomach track to form/heal so when you take it out the stomach won't fall away from the abdominal wall.  It needs to be changed out every 3 months so we are going in so they can show me how to do it.  I told Adam he needs to leave work and come help, because I am not sure if I can handle seeing a hole in Macy's stomach....I may pass out or something.

Macy's new thumb is doing pretty good.  She is still kinda holding it in towards the palm of her hand, but she is moving it and is starting to use it.  It is going to take a few more months atleast for her brain to kinda rewire and learn to pinch instead of scissor.

We have our first Halloween event coming up, and it looks like the weather is going to be unseasonably beautiful and warm.  High's in the 70's and even low 80's and sunny!  Macy is going to be a witch!  It is such a cute costume.  I will post pictures when we get back.

take care,

1 comment:

  1. I cannot WAIT to see pictures of her costume, I bet she will be ADORABLE!! I also am so glad you get to meet this doctor and get some of your questions answered. And YAY for Macy eating so well.