Monday, December 14, 2009

Day +257: Feeling More and More Normal!

It's day +257 of Max's post-BMT marathon and things remain good...thank God! We have been enjoying life away from the hospital for over 10 days now and loving it! We have not been up to A5 (the Hem/Oc and BMT floor) for over 3 weeks, something we have not experienced since this ordeal began last January 12th! It feels GREAT! We are loving being closer and closer to "normal" again! At times it's a bit scary, not seeing a CBC (blood levels) from Max for that long feels a little bit like driving without knowing where you are going but, we are getting more and more used to it all the time. Like I have said before, getting further and further away from A5 and Children's Hospital (at least in the capacity of having Max as a patient there) is the goal after all!

So, life is good. We are greatly enjoying the simple things. I knew you would all like the pictures in this post of the kids just being the kids! Bathing together again - YIPPEE!!! Dressing in their Bengals gear to root on the team together in front of the Christmas tree - YIPPEE!!! And I knew you all would love the picture of Spud cuddling on the couch with the boys. He has really become a part of our pack - we all love him and are enjoying him more and more each day. Of course, he continues to challenge us regularly with his "puppiness" but, he is calming down little by little and learning lots all the time about what is acceptable behavior around here. My sister in law, Monica, told me last week that I should share a couple of funny episodes that we have had with Spud for all of you, just to give you a good laugh. So, here goes...

As if we don't have enough craziness around here with three little kiddos, last week Spud decided to help himself to the Christmas tree ornaments several different times. He would just casually walk over to the tree, sniff around and, when no one was watching, pull off an ornament or two and sneak off somewhere to chew on them! Needless to say, I now have the tree blocked off so that he can't continue this and ruin all our low hanging ornaments! To top that little trick, however, he managed to get a hold of a dirty diaper of Ellee's last week and run around the backyard with it, with me chasing him all over, trying not to gag! After a half hour of chasing him around in the 20 degree weather, I finally had to give up. When he finally left it alone, I made him stay outside in the freezing cold for about two hours to "degermify" and then I wiped him down, top to bottom with Clorox wipes and made him drink a whole bowl of water to clear out his mouth! Disgusting, to say the least! Needless to say, I have moved the diaper disposal can to a place where he can't get anywhere near it! I am finally getting smart and puppy proofing this house even more than I already did. It certainly makes my life with Spudder-Dudder a lot easier!

Despite all these little incidents, Spud has definitely worked his way into all of our hearts and we are willing to put up with the extra chaos for him. He was neutered about three weeks ago and has definitely settled down a bit from that too so, we are making progress toward the end of puppy-hood, slowly but surely.

Beyond all that, we have really settled into some little routines around here. Max has tutoring at least four mornings a week, sometimes five and is Skyping three to five times a week with his class too. We are continuing to work on the best times and activities to Skype as it can be challenging for him to hear and follow along at times but, overall, it has been wonderful to have him connected like that. Alex is beginning to gear up for his return to school on January 5th. I have talked to his teacher and we have come up with a few things to help with the transition. Hopefully it will go smoothly and he will really enjoy it. I know it will be good for him to have some time with kids his age again and really to have some time away from his big brother. Max tends to be a bit controlling of little Alex so, being able to make some decisions on his own will be good for him again! Ellee is keeping us all laughing still, all the time. She is definitely exerting her two year old independence these days and showing us her personality more and more all the time. She loves to read books, sing and dance and spends most of her time looking at books or watching a couple of favorite videos she has of kids singing children's songs. She knows all the words and sings right along with them. She has already picked up a couple of Christmas songs, Rudolph and Frosty and her new favorite dance is the Hokey Pokey. She is a total joy!

We definitely have moments of frustration and boredom around here but, overall we have found ways to keep busy here at home and have enjoyed our extra time to just hang out together. I still love that I have the time to sit down and play a board game with the kids, to take a walk together each day with Spud or to read books together in front of the Christmas tree. This is something that I don't want to lose as we transition back to reality this spring so, I am going to make it a priority to find this time still, despite the craziness of life in the real world.

I wanted to also take the opportunity to thank my mom's good friend, Carolyn Maffeo and her nephew, Wilson, for helping Max get a very special surprise a few weeks ago from one of his favorite NBA players, Kevin Durant. Wilson works for the Oklahoma Thunder and Max and Carolyn had discussed this a few months ago. Max had told Carolyn about Kevin Durant and how much he liked him and thought he was just an incredible player. So, Carolyn talked to Wilson about Max, who in turn talked to Kevin and, low and behold, Carolyn showed up at our house a few weeks ago with an amazing pair of Kevin Durant's specially made Nikes - size 18!!!!!!! Max LOVES them and proudly shows them to everyone who visits us. You can see them on Max's little feet in the picture. We are hopeful that one day he will actually grow into them and wear them in one of his NBA games! ;) Thank you so much Carolyn, Wilson and Kevin!!! We have some more thank-you's coming your way too!

I am thrilled to report that Max's Meals is off to a fantastic start! We have gotten a wonderful caterer and friend of my mom's to volunteer to provide a Christmas Eve meal to all of A5 down at the Hospital! We could not be happier about this and are really looking forward to helping out with the dinner on Christmas Eve. It is like a dream come true for me that this is becoming a reality. I have wanted to do something since we were inpatient and I learned of the struggles so many families have down there so, the fact that it is going to happen and that we are going to be able to begin to give back already is just the greatest gift I could ever receive! The hospital was equally excited and is hopeful that we will be able to provide meals on an ongoing basis. They know how much they are appreciated by the families and how much it means to these people just to know that someone is thinking of them. I am beginning to try to think of ways to raise some substantial funds for Max's Meals through grants or fundraisers but, in the meantime, I would LOVE any support that any of you would like to provide through financial donations. You can send me a check made out to Max's Meals or give a donation at any Fifth Third bank here in Cincinnati. Thank you so much to those of you that have already supported our new adventure! We are looking forward to posting more and more good news about the success of Max's Meals!

As you can tell from the post, things around the Meyer household are good...really good. We continue to pray daily for Max's healing and ask for good health, strength and happiness for all of us. We definitely feel like our prayers are being answered and we are eternally grateful for that. Matt and I have said several times lately that we just cannot believe or underestimate how blessed we have been throughout this adventure. We are coming up on a year from when it all began now (Jan. 12, 2009) and it seems hard to believe that it has been that long. As we look at pictures from last Christmas, we get the chills, realizing that we had no idea what lay ahead of us. I think that those pictures will always be good reminders of what can be in life and how important it is to live in the moment. You just never know what lies ahead. We are extremely grateful that our journey has gone as smoothly as it has and that we have witnessed such a miracle in our lifetime.

Many of our BMT friends continue to have difficult struggles and challenges. We ask for your continued thoughts and prayers for Ethan (http://www.caringbridge.org/visit/ethanhenry), Preston (http://www.caringbridge.org/visit/prestonsnead), Brayton (http://www.caringbridge.org/visit/braytonmartin) and Matthew (https://www.carepages.com/carepages/babyandrewakin). We know how difficult this journey is and we also know how helpful and comforting it is to know that people are thinking of and praying for you...just like all of you have done for us for all these months.

Thanks for your continued support and love. More soon...

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

3 comments:

  1. Great seeing you all last week! Next time, Aunt Sarah and no parents!! High fives! Maggie B.

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  2. Dear Max and Family,
    My name is Jean and I’m a volunteer with the National Bone Marrow Transplant Link. Our organization helps patients, caregivers, and families cope with the social and emotional challenges of transplant from diagnosis through survivorship by providing vital information and personalized support services. We subscribe to Google blog alerts, where we found your story.
    Congratulations on your recovery--I'm so glad to hear your line was removed. (My daughter, who is a BMT survivor AND a pediatric resident at Cincinnati Children's,had hers in for a year!)
    To learn more about our programs and services, please visit www.nbmtlink.org or call 800-546-5268.
    All the best!
    Jean Jones
    P.S. If you send your mailing address to me (jeansjones@gmail.com), I'd like to send you our Hope and Healing bracelets.

    ReplyDelete
  3. I wish the Meyer family a very Merry Christmas and Happy New Year! It will be a pleasure to have Alex back at AHP. We look forward to seeing you there.

    Lynn Rothfuss

    ReplyDelete

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