Day +146: Max's Mighty Mob!

It's day +146 and Max continues to do very well in his recovery. It's been 10 days since we have been to the hospital which is by far the longest we have gone without being there since January! I have refrained from calling down there several times, telling myself not to worry and to get used to this...the goal, after all, is to move closer and closer to not going down there at all! Anytime I worry for some reason, I just look at Max and realize how wonderfully he is doing. He looks great, generally feels great and is more and more his old self everyday.

For example, this morning we decided to go for a little walk/bike ride, something which we have been doing quite a bit the last week or so. Alex and Ellee ride in the double stroller and Max rides along side us on his bike. We decided to try out the Little Miami bike trail about 10 minutes from us and found that it was perfect. It was mostly shady and cool since we went in the morning and Max lasted for almost 40 minutes, riding along and enjoying being outside. Once we finished there, the boys noticed the little putt-putt golf course nearby so, we drove over to check it out. It too was perfect...shady and nobody there! So, we played a round of putt-putt as well! It was a really fun morning. Thankfully, we are finding more and more creative ways to get out for a bit, like this. What made this morning even more enjoyable was the fact that school started today for the kids around here. At least one good part of this for Max is not having to head back to school yet! He still gets to have a little bit of summer fun...although nothing like a real summer.

We got to go and meet our new little family member last Saturday, which was really fun and exciting! The boys are now calling him "Spud", short for Spud Webb, one of their favorite basketball players (may have something to do with his height :) ). I think it may stick so, we may have a dog named "Spud" arriving here in about two and a half weeks. I am excited about it and the boys can hardly wait. They talk about him everyday and ask me questions about what he will do, where we can take him, etc. It will definitely add some excitement (and maybe a bit of work) around here!

We have another exciting event coming up that we are hoping all of you will support in one way or another. I have created a team called Max's Mighty Mob to walk in the Cincinnati Walks for Kids event on October 10, 2009 at Coney Island. The money raised for this walk supports Cincinnati Children's Hospital and specifically, I am asking that the money that our team raises be directed to the Hematology/Oncology unit at Children's and Dr. Davies. This is an awesome and fun way to give back a bit for everything that the doctors and nurses at the hospital have done for us...and it is nothing short of a miracle as those of you who have followed our journey know so well! So, if you would like to join us in walking on Oct. 10th, please follow this link to register: http://giving.cincinnatichildrens.org/netcommunity/maxsmightymobs If you can't make the walk but would like to contribute to the funds raised in honor of Max, you can follow the same link above and give a donation, under the "Support Our Team" area of the site. If you are going to join us at the walk, please send me a quick email too (kmmaemeyer@yahoo.com) because I am going to get t-shirts for everyone to wear also! I will keep updating everybody on our status for the walk through the blog also. Thanks for your support!

So, as you can see, things are good...life is good. We are settled into our new life at this point and making the best of it. We know we just have to remain patient and continue to give Max's little garden time to bloom. In the meantime, we are enjoying our time together and our much slower paced lifestyle. It is a bit of a weird spot, however, I must admit. While Max appears to be doing so well, if we were to be able to somehow view the inner workings of his circulatory system, we would find him to be in quite a rough state. He still cannot fight off most germs on his own and would require hospitalization to make it through a fight against just about anything bigger than a slight cold. If he were to catch the flu or some other viruses (like CMV, EBV, adeno to name a few...all fairly common), he would most likely not survive. Thus, while we are getting our old Maxer back more and more everyday, we are still in a terrifying spot. We just know that we have to continue to protect him as much as we possibly can from these icky germs until his immune system is back up to full par. As I've said before, that will hopefully be about one year post transplant, however he will still require re-immunization for all those really major germs after that point. Bottom line...we still have a long way to go.

Sometimes when I check on him at night, sleeping peacefully in his own bed, across the room from his little brother, I am struck by the magnitude of what he has been through...what we have all been through, in these past 8 months. I am just so thankful, just eternally grateful for the miracles that the doctors are able to perform today. We would all be in such a different place in our lives if our Maxer were not here. Please join us in giving back to the wonderful caregivers at Cincinnati Children's Hospital by supporting the walk on October 10th. Thanks!

More soon...

Peace and love,

Kristi (and Matt, Max, Alex and Ellee)