Day +194: The Tide is Turning

It's day +194 for our Maxer and we have just had a string of events and fabulous news that has made us feel like the tide is finally beginning to turn for all of us! Last Friday we spent the day down at the Day Hospital for our regularly scheduled bi-weekly check-up and infusion of medications. We got to meet with Dr. Davies, Max's head doctor, which we hadn't been able to do in about 6 weeks. I had lots of questions saved up for her and every answer she gave us was so encouraging! She feels that Max's immune system is beginning to respond, based on a couple of different signs. This is obviously huge news and a wonderful sign that things are progressing well for Maxer. It also means that a couple of prior restrictions can be lifted, the largest of which is that Max no longer has to wear his mask when playing outside!!!! Max could not believe his ears when Dr. Davies told us this...he fell back in his bed, pretending to faint and then did a little happy dance. She loved it and got a huge kick out of his reaction. We only need to wear the mask when going to and from the fifth floor at the hospital and in any other situation where Matt or I deem it may be appropriate (obviously if he is going to be around more than one or two people outside, we will probably have him put it on). She said that we still need to be careful and essentially keep to ourselves throughout this viral season (with the exception of a few clean visitors) but that she really felt that Max's immune system was giving him some layer of protection at this point. She believed this so strongly that she shocked me by saying that she wanted him to get both the seasonal and H1N1 flu vaccines! I couldn't believe my ears! She explained that she believed his system would respond at least somewhat to the vaccines and, as a result, give him some level of protection against these viruses. If it didn't, there was no harm done because the virus is not live and it would essentially just amount to the wasting of a shot. So, Max got a seasonal flu shot last Friday while we were at the hospital and will get the H1N1 shot once it is available! Wow! On top of all this, we discussed the possiblity of a return to school sometime post-viral season if all remains well and a trip to Disney with Make A Wish in April or May!!! We also discussed the removal of the central line briefly and she hopes we might be able to get it out before Christmas.

Obviously, all of this news was so elating! I just kept looking at my little boy and thinking, "he is getting better...yes, he is getting better!" It was an amazing feeling for all of us. The first thing Max did once we reached home was to get out of the car and run around the yard without his mask on. It may seem like such a small thing but for Max, this is incredibly liberating. He has endured those darn things for 10 months now outside and I think it feels so great to just be able to open up the door and walk outside! I can tell you for us it feels great too - we can finally open our windows here at home and drive with Max in the car with the windows open! Woo, hoo! We are living big time now!

Needless to say, we were on cloud nine Friday night. We all were just reveling in the excited emotions that progress brings! To top off these elated feelings, Matt, Alex, Ellee and I joined over 100 people on our team, Max's Mighty Mob, at the Cincinnati Walks for Kids event for Children's Hospital on Saturday morning. It was incredible. Everywhere we turned there were more supporters of Max and our family, wearing their "Max's Mighty Mob" t-shirts with pride and marching along with us in thanksgiving and support of the miracle workers at Children's. We could not have asked for a more uplifting and positive event. It was amazing to see all of the people that we know have been behind us for all these months there in person and to be able to hug them and tell them thanks. We even had family members and friends that traveled from a great distance to walk with us. My Aunt Annie and Uncle Garry and cousins, Tim, Bill, Brighty and Molly came all the way from Cleveland along with a couple of their wives and friends. A very special friend of mine from Michigan State, Karen Toovalian, brought her husband, Brian and their three kids, Lia, Stefanie and Paul (7, 5 and 2) all the way 6 1/2 hours from Michigan to join us too! Not only was it touching to have so many friends and family members from Cincy there but it was something extra special to know that these folks made such a HUGE effort to come down here to join us and support us in this way.

We ended up having one of the largest teams of walkers and raising over $10,000 for Children's. It was a day to remember. The only thing that can top it is to have Max at the head of the pack, leading his Mighty Mob next year and for many, many years to follow! We definitely plan to make this an annual family event and hope to recruit more and more Mob members and more funds for Children's every year so, hold on to your t-shirts if you have them!

To top off this string of incredible days, we celebrated Alex's upcoming fifth birthday (tomorrow, 10/13) and Ellee's upcoming 2nd birthday (10/24), along with cousin Willie's 8th birthday and Uncle Mark's ?? birthday last evening here with Matt's family. The kids had a blast playing an official baseball game with the dads on the diamond down the street and then came back here for a special "Fancy Nancy" dinner in honor of Ellee's favorite storybook character. Check out the pics from the walk and the birthday bash both in this post and in the Snapfish Fall Photos link on the side of the Blog home page. We got some great shots! We have spent most of today playing with Alex and Ellee's new gifts and assembling some of them (lucky me). It's been nice to have some new toys in the house - definitely lots of excitement!

We started obedience training with Spud last week and it seems to be really helping. He is settling in around here and beginning to listen to me a bit better! :) He still has his wild puppy moments but, we are all absolutely in love with the little guy and enjoying him the majority of the time. He is growing like a weed - must be at least 3 or 4 times bigger than he was when we got him. The vet says that he will likely far surpass the 40 pounds that the rescue organization thought he might be! Whoops! All the more reason for that obedience training!

All in all, things are great. The light at the end of the tunnel keeps getting brighter and brighter all the time...sometimes it takes big leaps in brightness like it did last Friday. We are so grateful for Max's steady, positive progress and hopeful that time, continued care and vigilance will soon find him ready for the "real world" again. We are struck continuously by the miracle that has occurred within our lives. Many times it is hard for us to really believe all that has transpired in this relatively short amount of time. Just 10 months ago we had three seemingly healthy, beautiful children. Things changed overnight and took our breaths away. We were stunned and quickly called to action to save our child's life. Now, as things begin to slow down again and we are able to reflect on all that has happened, we feel so blessed, over and over again. We want to use this journey to make a difference in people's lives and to make the world even just a little bit better as a result of what Max has had to endure. We cannot think of a better way to return our blessings than to turn this difficulty into something positive and beautiful. The walk this weekend was a great example of this in action and we hope to do more and more things like this as time goes on.

I want to leave you all today with one of my favorite poems. I have always loved this and it seems more and more meaningful and relevant to me as each day passes. Hope you enjoy it too.

Christ Has No Body

By St. Teresa of Avila

Christ has no body now on earth but yours,

No hands but yours,

No feet but yours,

Yours are the eyes through which is to look out Christ’s compassion to the world;

Yours are the feet with which he is to go about doing good;

Yours are the hands with which he is to bless men now.

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)