Wednesday, January 20, 2010

Day +294: Back on a Smooth Road

It's day +294 for Max and we have been riding down a smooth road again for the last few weeks. His Cyclosporine level issues have resolved themselves for the most part, the signs of graft vs. host disease that he had have calmed and we have not been down to the hospital in almost a week again! The best news is that we are not slated to be back down there for another 16 days now which makes Max very happy! He just asked me today when our next Friday Day Hospital appointment was and then he calculated the days until our next scheduled visit, Feb. 5th.

Alex returned to school 3 weeks ago and has adjusted extremely well. He is really enjoying it. He likes his teachers and classmates and has been having a good time playing with the Legos in the classroom and learning his letters and numbers. It has been remarkably nice to have another return to normalcy in the house. I can't tell you how good it has felt to have Alex back in school. I didn't think it was going to be this way but, it has really helped all of us to have the normalcy. All four of us enjoy taking him to school on Monday thru Wednesday and just getting to see a few people while we are dropping him off! Max wears his mask while we are in the school and people look at us with wondering looks in their eyes but, he doesn't get bothered at all. The mask has become a welcome part of his life as he knows it provides him with valuable protection from germs at times. Ellee loves going into the school with Alex and seeing his room. In fact, she is dying to get to school. She hates leaving Alex there, however, and has cried part of the way home every time! Yesterday when we picked Alex up, she gave him a huge hug as soon as she saw him and then held his hand all the way to the car. It was precious. Her world is her two brothers and she definitely misses them when they are not with her.

We do have a little change of plans with regard to Max's return to school. I didn't want to put anything out in the blog until I had the chance to talk to the school about it but, at our last appointment a few weeks ago with Dr. Davies, I asked her about school. We were tentatively planning (as ALL plans are in the BMT world) Max's return to 2nd grade at Wilson for sometime in March. However, Dr. Davies did not want him to return until at least mid-April and said that she did not think he could return at all this year for educational purposes. She would like him to spend a bit of time late in the school year "re-acquainting", as she put it, with the other kids and the school. The primary reason for this delay is really Max's energy level. She does not believe that he can make it through a full day of school and, I have to admit, I was relieved to hear her say this. We definitely notice often that he is still tired...more tired than usual...and this is perfectly normal for him at this stage of the BMT marathon. I have been wondering for some time how he was going to make it through a long, tiring day at school. So, at this point, since we have our Make A Wish trip to Disney tentatively scheduled for the end of April, we are planning to get Max up to school for some social-type times in May. We're going to plan it out more specifically as it gets closer but, we are initially thinking maybe some class meetings, lunches and recesses. Then he will hopefully return normally with everyone else next year, to 3rd grade.

Although this news was a surprise to us, we have learned not to be surprised by anything throughout this journey. It is a long one, as we have referenced many times, and Max's health and healing are of the utmost importance to us. Whatever we need to do to keep him safe and getting stronger everyday is what we are going to do. Max was definitely a bit disappointed and confused but, understanding and agreeable to continuing his home schooling with his wonderful tutor, Mrs. Conlon. It will be a banner day when he is able to go up the steps of the school bus again and be a student, just like the other 3rd graders.

With all this in mind, and to give Max some reading and writing practice, I have setup a personal email account for him. I thought it would be fun for him to get his own messages through it and be able to respond to people all on his own, rather than through this blog or through my email account. So, please feel free to send him a note anytime at He is VERY EXCITED about this idea and had a smile on his face tonight as we answered his first email from Daddy!

People often ask me how I am doing throughout all this and overall, I am doing well. I am thrilled to see Max doing so well and feel so incredibly blessed with his progress. I am so grateful for my three beautiful children and feel lucky to be able to have so much time with them at these precious ages. We really do have extra time to just be together and have fun and I am cherishing that. I have to admit that it is challenging, however. Being at home 99% of the time with three little ones for over a year now has been something totally new for me. I find my patience tried just about everyday, especially when you add in the antics of Mr. Spud! I feel like we have all had to continuously adjust this year and it's been tough. But, whenever I feel frustrated or sorry for myself, I try to think about all of the families that we know and those that we don't know who have so much more difficult struggles. They are all the motivation and inspiration that I need to get through the tough moments.

I want to leave you on a high note tonight. Yesterday we got to do something that we haven't done in well over a year - we went to see a movie! Max and Alex have really been wanting to see Alvin and the Chipmunks, the Squeakwel since it came out at Christmas-time and I have been waiting for the right time to take them. I wanted to go when school was in session and after the movie had been out for awhile so that the theater would not be crowded at all. Some time ago, we had gotten permission from Dr. Davies to do this, as long as it was under these conditions. So, finally yesterday, I got the guts to do it! My mom and I took all three of the kids and it was such a joy to experience with them. As we were walking in, Max was so excited he could barely contain himself. He looked at all the movie posters and said, "wow, this place has everything!" Then when he saw the concession stand, he yelled, "they have ICEEs!!!! And they even have Mountain Dew!" I had promised ICEEs and popcorn, if they had them. While we were ordering our food, Max was checking out all the candy and I heard him say, "Awesome!"

The kids all enjoyed the movie. We were almost the only ones in the theater. At the last minute, a man walked in with two little kids but, they sat a few rows away from us so, I didn't worry. Ellee was talking, laughing and dancing throughout the movie and Alex was just loving the popcorn and ICEE. Max loved the movie and has talked about it a lot today. He wore his mask in and out of the actual theater with no complaints. After the movie was over, everyone had to potty so, we headed to the bathroom. We were lucky that no one was in there either. They had the new super powerful hand air dryers and the kids were hysterical with them. They had a blast playing with them for a few minutes and my mom's comment was, "wow, Kristi, you gotta get out more!" :) Overall the trip to the movies was a hit. They are already asking when we can go again!

Thanks for keeping up with our continued journey and for all your thoughts and prayers. More soon...

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

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