Wednesday, December 22, 2010
Day +630: Merry Christmas
Today was day +630 for our Max and life is good! I have been wanting to blog for sometime now and just haven't been able to find the time. Things have continued to be quite busy around here, especially lately, as I'm sure everyone can relate! It's nice to be back in the "real world" again but, sometimes I really do miss the simplicity of our days stuck in isolation at home, believe it or not! I knew I would one day get to the point where I would look back on those quiet days here at home longingly...and it seems to have arrived already!
Max continues to do very well. He had his monthly checkup two fridays ago and his counts remain steady and look good. Dr. Davies thoroughly checked out his skin, respiratory system and gut and gave him the thumbs up, once again. We discussed the wean of the cyclosporine briefly and, without giving me much reason, she told me that she did not think she would be comfortable starting the wean until the spring time. I didn't ask her for much explanation - I just know to trust her on this one. We obviously know that she knows what she is doing and know that there is good reason to wait. So, we patiently wait. We are anxious to be done with the cyclosporine just so that Max's immune system can gain full strength with Ellee's marrow at the helm and so that he can begin his re-immunization. It is nerve racking to think that he is attending school and really doing just about anything he wants to, all without any immunization protection at the moment. We are relying on the antibodies he had previously received from IVIG and herd immunity and that can be a bit scary - especially when you hear quite often lately that herd immunity may be breached because of people not immunizing their children. I'm not making any political statements here...I'm just sharing our new perspective in light of Max's journey.
Despite the continuation of the cyclosporine, Max is thriving! He is just absolutely loving life being a "normal" 8 (almost 9) year old again. The boys and Matt really enjoyed their time at Reds Fest a few weeks ago. They got to meet several of the players and get some autographs, etc. Their mohawks were a huge hit too!
We have all been busy enjoying the fun of the holiday season together lately. About two weeks ago, we took our traditional annual trip downtown to see the trains, ice skate on Fountain Square and visit with Santa with the Meyer family. We were unable to do this last year because Max couldn't be out in public like that so, it was really nice to be able to return to this tradition. We had some cruddy rainy weather but, it didn't stop us from enjoying everything. Max LOVED ice skating again. He worked so hard at it. His little bird legs were bending out at the ankles because his skates were a bit big and he must have fallen down 50 times but, he made it around that rink at least 20 times! He is looking forward to going again soon before the holidays are over. The kids all enjoyed their visit with Santa too. Spud even got to see Santa one day recently...I thought you dog lovers out there would enjoy that picture! We had another special visit with Santa this week too, at my parents house with all the Cincy Sherwin grandkids. Mama and Poppy had special connections!
The kids had their first snow day of the year last week and we had a blast! I can honestly say that I even missed snow days last year! Since we were home everyday anyway, there was nothing special about a snow day last year. But, this year, we reveled in it! We played out in the snow for a long time and then came in and had hot cocoa and cookies, just like you're supposed to! We played games together and hung out in our jammies for most of the day. It was a nice reminder of the slower days of post-BMT isolation that we used to know so well!
We have also been busy with the hospital for multiple reasons lately. Max started seeing a psychologist to get some help with the few emotional/behavioral outbursts that we have had over the past six months. He really struggles when something unexpected comes up during a hospital visit and turns into a kid that I do not recognize. He gets extremely upset both physically and emotionally and lashes out at everyone in the room. Thus, we are working with a great doctor that specializes in helping kids with another chronic medical condition to learn coping skills, etc. It is quite an intense program which requires lots of extra visits to the hospital but, I know it is going to really help Max and be just what he needs.
Alex also kept us a bit extra busy with the hospital over the past few weeks, surprisingly! We received a letter and phone call from the nurse at school about two months ago, telling us that Alex had failed his hearing test at school and that she would be refferring us to an ENT for further testing. So, we made an appointment with the ENT that we have gotten to know well at Children's through Max's journey and took Alex to see him. Sure enough, he failed the hearing test again at the hospital and they pinpointed that he had hearing loss at one frequency in his left ear. It is the kind of loss that they see with WWII vets and rock band members so, it was quite a mystery as to why he would have this loss. Thus, they had Alex undergo a CT Scan to check out the formation of his ear to see if it gave any clues to the cause. Thankfully, we just found out yesterday that his ear is normally formed. So, for now, we will continue to monitor things with the ENT and see what comes of it. Of course, our hope is that this is just a fluke that he has this hearing loss and that it will never worsen.
Along with all that, I have continued to be busy volunteering on different parent advisory committees and groups for the hospital. I really enjoying giving my time to the hospital in this way as I have seen their commitment to continued improvement and believe that it is a great way for us to help others through our experience with Max.
Max's Meals & More has been keeping us busy too! We have had a tremendous amount of positive and exciting news with the organization lately. We submitted our application to the IRS last week for official non-profit status and hope we will get some word early in 2011 regarding our request. We have a fabulous Christmas Eve brunch planned for this week and have received some great donations that have allowed us to provide some special things to the Cancer and Blood Diseases Institute and the inpatient families. We will be delivering a flat screen tv, XBox and games, and a cart to roll it all around on to the Institute on Christmas Eve. In addition, we have wonderful goody bags, toys/games and even Starbucks gift cards for each family to take with them as they leave the brunch! A group of volunteers was here tonight helping us get it all ready and it was just awesome to see it! Thank you to all of you that have supported Max's Meal & More thus far. You are helping us to provide some really special treats for the families undergoing such tough times. Be sure to check out our website or Facebook page for pictures of the brunch, gift bags, etc (http://www.maxsmeals.org/).
People often ask me lately how the kids are doing with their re-assimilation to school and transition back to reality. I tell them that it could not have gone better for all of the kids. They have amazed me with how well they have re-adjusted to school and "normalcy". Sometimes I feel like the return to life as we knew it has been much more difficult on me than on them! They have done so well that I have to ask myself sometimes if the last 23 months really happened! It is a blessing. It has been a HUGE adjustment for me to have the boys gone five days a week, especially with Max being gone most of the day, and I miss them when they are not here. But, it is exactly what we hoped and prayed for and it is AWESOME to see them enjoying their lives so much!
The next few days are filled with happiness, peace and joy around the Meyer homestead! We have formed some wonderful traditions and we are all greatly looking forward to enjoying them with each other and our families. Not only are Christmas Eve and Christmas day fabulous but, we have another very special day on December 26th...Max's 9th birthday! Each day is a gift...this time of year just makes it even easier for us to remember that. We feel so blessed and so lucky to have time to spend with each other this holiday season. There is no doubt that is our greatest gift.
Wishing you and yours all the peace and joy of the holiday season! More soon...
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)