Monday, October 17, 2011

Home, Minnesota, & Halloween!

We are back from Macy's appt.  We had a pretty good, but quick trip.  I wish we could have spent some more time in Minnesota; but maybe next time.  After a long 12 hour drive we arrived on Wednesday evening.  We made a huge mistake and drove through downtown Chicago at 8am that morning so it took FOREVER to get through Chicago.  Nonetheless we are not use to toll roads, because we do not have them in Michigan.  We had no cash (we never carry cash), so we were given a bunch of pink papers (IOU's) for the tolls we had to pay when we got home.  But once we got into Wisconsin the drive was really nice.  The landscape looks extremely similar to Michigan as does Minnesota.  Macy did wonderful.  She slept and played with her toys.  She only fussed when she was hungry so we stopped about 4 times during the drive to feed her, and eat ourselves.
Adam with his IOU's from the Illinois tollroads

Macy hanging out in her car seat playing with her toys while we get gas

Me and Macy at our first stop to get lunch!

Macy playing with the Mall of America brochure in the hotel room

U of Minn Amplatz Children's Hospital

The appointment was from 9am to about 2pm on Thursday.  We learned a lot of information about FA and the transplant process, and received a tour of the bone marrow transplant floor of the hospital.  They have a brand new children's hospital, and it is very nice.  Everyone was friendly and very knowledgeable.  Dr. Wagner is nothing short of brilliant.  This visit definitely made us feel a lot better about Macy's future; most importantly hope that she can have one.

Transplants for FA patients are getting better and better and safer; but there are still a lot of risks involved and fatal complications that can happen.  Sibling matched donors are the best to give the greatest chance of a successful transplant; so that is what we are planning to do.  Since there is only an 18% chance that each child we have naturally would be a donor match for Macy AND not have the disease themselves; we are planning on doing In-Vitro Fertilization with Pre-Genetic Determination. (IVF w/ PGD).  This is basically the In-Vitro process with an additional step which is where they test the embryos, and only implant those that are FA free and a donor match for Macy.  We have always wanted more children, and this is the only way we can have them and make sure he/she is FA free. Plus, he/she could safe Macy's life as well.  When the baby is born, they collect the stem cells at birth from the umbilical cord, and keep them for Macy's transplant.  There is still some information we need before we can do this; such as the specific gene mutation, and what FA gene has the mutation on it. I am hoping we will have this information, and will be able to start the In-Vitro process in 2012.

We did swing by the Mall of America after Macy's appointment on Thursday.  We went to the 'Sea Life' Aquarium in there and Macy loved looking at all the sea life.

Eating at 'Noodles & Company' in the MOA

Macy checking out the Sting Rays


Macy loved these colored tubes of Jelly Fish!

Macy trying to touch the Jelly Fish (yes those are real--looks almost like a picture)

Adam and Macy in the shark tunnel

2 sharks taking their daily nap

The best photo I have of the 3 of us.....we never time it right!  Adam and I decided to splurge and get Starbucks (usually we never pay that much for coffee).

Bye Bye Twin Cities!!!  Till we meet again...

Macy is doing well.  Today she started sneezing here and there, and has had a little bit of a runny nose.  She has only been sick once (when she had RSV in the hospital last winter) so hopefully she is not getting sick now.  One thing we learned is that every time she gets sick it is going to damage her bone marrow.  She will bounce back but will always be on a downward decline until she reaches bone marrow failure.  We need to try really hard to keep her from getting sick; but we won't be able to completely prevent it all the time.  Let's hope her runny nose tonight was just a fluke.

She is starting to pull herself up on furniture which is good.  I have a feeling she is going to be catching up, and be right on track by the time she is 1.5 years old.  Hopefully her hand surgery planned for December will not put her more behind though.  We are meeting with her hand surgeon Nov. 7th to discuss her surgery.

Well that's about it for now.  I hope all is well with everyone!  The fall season is going by fast.  Can't wait until Halloween.  Here are some pictures from our Halloween weekend camping at the lake a couple weeks ago.
Getting ready for Trick or Treating!  I love that little witch costume on Macy!

Family picture....atleast we are all looking in the same direction!

One of the decorated campsites

Another campsite

Our campsite.  You can see Adam's famous "illusion box" on the right where he appears and disappears.  It is always a big hit, and it is so funny hearing people guess how they think it works.  Some thing it's a hologram and it's funny to see when he comes out to show it is a real person.  We won 1st place this year!  :)

take care,

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,