|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|