Friday, January 8, 2010
Day +282: Off to a Great Start
It's day +282 and I thought I'd give everybody a quick update on Max's status and things around here since another week has gone by already! Max is doing well. We have been down to the hospital twice this week and things are again positive and good. On Monday, Max had another blood draw to check his cyclosporine level and kidney function (they monitor this closely while the kids are on the cyclosporine as it is tough on the kidneys) and finally, things were better with regard to the cyclosporine level! It wasn't quite where they want it to be but, it was much closer so, we all breathed a sigh of relief, at least somewhat. They also checked his eye and rash while we were there and both are much improved. Max did much, much better with the needle stick. I worked on preparing him all weekend, little by little, and we are now doing some breathing together (kind of like when you're in labor :) ) and trying to think of a happy place while they are doing it. Those two things, combined with some numbing creme we are putting on before we leave here, seem to be helping him get through the sticks much better.
We were down in Day Hospital yesterday for our regularly scheduled monthly IV infusions and visit with Dr. Davies. Max's cyclosporine level was again acceptable (phew!) and Dr. Davies felt that everything looked great! She kept commenting that Max looked so grown up to her, she couldn't get over it. She hasn't seen him in probably about two months and she just kept commenting on how good he looks and how grown up he has gotten. Nice things to hear from your child's bone marrow transplant doctor! She also gave us more good news - Max is now off of the low bacteria diet that he has been on since shortly before the transplant! This was music to Max's ears as he has been dying to eat strawberries and grapes! We stopped and I ran in to pick some up on the way home. He has eaten them for breakfast, lunch, dinner and snacks! He also got to have a treat on the way home yesterday - a McDonald's strawberry shake - one of his favorites that was also not allowed on the low bac diet due to the soft serve ice cream. In addition to this good news, Dr. Davies said that we are a go for our trip to Disney with Make A Wish at the end of April (April 17 - 23rd)! She has already signed the paperwork and one of our Nurse Practitioners has made sure that they have all our reservations ready to go! Very, very exciting! Finally, Max got a second H1N1 vaccine yesterday while we were at the hospital to try to help give him at least some level of protection against that virus.
All in all, our visits this week were positive and we seem to be getting back on our smooth road to recovery for Max. They were exhausting as Max is definitely tired of the hospital and the pokes but, when you leave on a high note, it really helps. 2010 is already looking up!
Alex also had a big week - he returned to preschool on Wednesday afternoon! He really seemed to enjoy it. I stayed with him for about the first hour but, realized shortly that he was having fun and didn't seem to care if I was there or not. He is in an afternoon class so, it is smaller than usual with only 10 kids. Eight of the kids are boys so, Alex is in heaven! He said that he played with several of them when I picked him up and told me that a couple of them were really nice to him. I think it is going to be great for him to be back. It was a big day around here to have someone returning to "normalcy" like that and we celebrated with pizza that night! We will be practicing extra good hand washing when he comes home and saying some prayers that the wrong germs don't make their way home with him.
We had a pretty good snow fall here in Cincy yesterday too and we all enjoyed playing in the snow last evening after Matt got home (thus the pics at the top of the post). It was really Ellee's first time to play in it and she enjoyed a little ride in our sled. I pulled her up and down the street and she kept saying, "go faster, Mommy!" I'm sure she will love sledding down some hills soon! Alex, Max and Matt enjoyed playing tackle football together and Spud ran around with some of the other neighborhood dogs and loved digging his nose down in the cold stuff!
We are off to a good start in 2010 and are hopeful that this will be a wonderful, fun year for all of us, filled with healing for Max. As good as things are, it remains a struggle for me to adjust back to reality. I know with time that things will get easier but, for now, it's difficult. Our eyes have been opened to a world we did not know existed, we have truly learned how fragile life is and our life priorities have been completely shifted. I think about and pray everyday for our friends that remain hospitalized in really tough situations with their children (especially the Akins, the Alfreds and the Martins). I wish there were something more that I could do for all of them and I feel helpless most of the time. I am working on getting Max's Meals really up and running so that at least we can provide families like them with some special comfort food now and then and be sure they know that people are thinking of them. Thank you to all of you that have provided us with donations! We are working on a Valentines Day dinner now and will keep you posted as things progress. These families are an absolute source of daily inspiration for me. Thinking of them and reading about their struggles reminds me constantly about what is really important and makes me appreciate every moment that I have here with my kids.
We have been incredibly blessed throughout this journey and have learned a whole lot about life. We are so thankful for the support that all of you have provided us along the way and continue to provide us now. I can't tell you how much your notes, emails, cards, phone calls, packages, etc. mean to all of us. They brighten our days. Thank you.
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)