Quote of the day (Thanks Camille!): " In everyone's life, at some time, our inner fire goes out. It is then burst into flames by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit." ~ Albert Schweitzer
We had a peaceful night of sleep last night mainly because Mattie's IV fluids stopped flowing in the night. I learned this when I woke up at 6am, which explains his quietness and no need to use the bathroom in the middle of the night. In any case, when Peter woke me up this morning, I was in a daze. This was the first night I actually had a dream and remembered it. The irony is in my dream I was on a cruise. Don't get too excited. You had to see the ship I was on! It was an OLD, VERY OLD ship. In fact, in my dream I left our dinner table and decided to check out the ship below the decks. I was so frightened by the instability of the floors and the construction of the ship, that I ran back up to where Peter was. At which point Peter woke me up from my dream, so I have no idea what happened, but it doesn't take a rocket scientist to put this one together. Actually this dream really is very telling of our life here. Things seem happy and grand, but when you scratch the surface there is a lot of instability and peril ... like being on a sinking ship!
Mattie woke up around 8:30am. He was complaining, as he has now for two days, that his ankle, knees, and back hurt him. I suspected yesterday before Mattie had a blood test that his white blood cell count was rising. I remember a good friend of mine describing the pain she was in when she had too many white blood cells in her body after receiving GCSF (the white blood cell growth factor). Well sure enough, I feel that because Mattie's white blood cell level is so high, he is experiencing pain. I am confident the pain will go away soon, so when Mattie told me he was in pain, I wasn't surprised. Helps to have friends who have gone through this before and are willing to share the details with you! Mattie did not want to go downstairs after he woke up. So we spent the morning playing in his room. We did a lot of puzzles until Kathie arrived.
Mattie woke up around 8:30am. He was complaining, as he has now for two days, that his ankle, knees, and back hurt him. I suspected yesterday before Mattie had a blood test that his white blood cell count was rising. I remember a good friend of mine describing the pain she was in when she had too many white blood cells in her body after receiving GCSF (the white blood cell growth factor). Well sure enough, I feel that because Mattie's white blood cell level is so high, he is experiencing pain. I am confident the pain will go away soon, so when Mattie told me he was in pain, I wasn't surprised. Helps to have friends who have gone through this before and are willing to share the details with you! Mattie did not want to go downstairs after he woke up. So we spent the morning playing in his room. We did a lot of puzzles until Kathie arrived.
Kathie (Mattie's OT) came to visit Mattie at 11:30am. Kathie has been reading the blog and read my concerns about Mattie not feeding himself. So today Kathie focused on this first. I prepared cheese, ham, and yogurt for Mattie to eat with a fork and spoon. Don't you know this character can use a fork and spoon! He has been holding out on us, which to some extent did not surprise me. This is part of the control issue that is going on here. If he pretends he can't feed himself, he needs more of our one-on-one attention. But another side of Mattie, that Kathie knows well is that Mattie doesn't like to look embarrassed or incompetent. So when she asked him to use a fork or spoon and offered to help him lift his arm, he said NO! He was going to do it himself. Kathie was very proud of Mattie's accomplishments which only inspired him to do more of what she asked. Remember Kathie has a two and a half year relationship with Mattie. She has worked through some challenging issues with Mattie, and she knows that if he assesses he can't do something, he shuts down. In fact, I remember one time Kathie asked Mattie to walk in a straight line, and this simple request sent him into tears and he spent the remainder of their session in the corner of her office. Kathie and I both learned that day, the art of getting Mattie to do therapy without it looking at all like therapy. So on the OT front, Mattie is progressing quite well. After their session, Mattie showed Kathie his electric train that is set up in our living room. Thank you Kathie for a good session!
After Kathie left, Mattie and I played with his trains. He really wanted Linda's Christmas tree back out again to decorate his train scene. So despite my efforts to put Christmas away, out it came today. Mattie and I spent several hours by the train set today. We talked about quarters and the different States in the US represented on the quarters. Mind you we were throwing quarters again at the train cars as they were going around the track. Mattie was playing and eating. It was a good eating day for Mattie, and while eating I showed Mattie some You Tube clips. My lifetime friend, Karen, introduced me to the Muppet show clips on You Tube. I used to love the Muppets, and it is a shame they are no longer on TV. In any case, Mattie has come to love the Muppets too, and he gets a big kick out of the song, "Mah-na-mah-na". Do you remember that?! Harry guy with sun glasses, two pink cows singing "do-doo-do-doo do". I attached a clip of it below in case you want a good laugh. Mattie saw this clip several times today, and then he and I acted it out for most of the afternoon while doing various tasks. You had to see it to understand how funny this was. "Mahna Mahna" from the Muppets Show----http://www.youtube.com/watch?v=QTXyXuqfBLA
In the midst of playing, I was also trying to keep track of the companies who were coming today to pick up Mattie's hospital bed. Mattie refuses to sleep in this bed anymore, and he also doesn't want to sleep in the living room any more. So instead we carry him up the stairs to his bedroom. In fact, he can actually climb some stairs with assistance now. In any case, nothing is simple. One company has to pick up the bed and its frame, and another company has to pick up the special air mattress that was ordered to help Mattie's bed sore. Just trying to keep track of these two companies today, drove me crazy! Something about the rain, trucks, and coming to DC to park, makes for a very bad mix. One company did make it here today. So I am happy to report we are minus one hospital bed in our living room. I am SO thrilled to reclaim the living room back. After the bed disappeared, there were stacks of things everywhere. So I started reorganizing things. I told myself earlier in the day that I wasn't going to do this. I am still not feeling well, and this stuff is taxing. But when I saw that state of disrepair things were in, I couldn't take it. Even Mattie was helping. He helped to straighten out ALL his Lego sets. My new idea in my spare time is to create a Lego rent-a-center! I don't know about you, but you buy these sets, and their novelty runs out after a week. At which point I would like to give the thing back and get a new set for Mattie to play with. Maybe a new venture in my next life. Back to the story. So while I was straightening things out Mattie was building Lego sets. It kept him busy. Things still are not as organized as I would like, but it is a definite improvement. I certainly couldn't have made this much progress if it weren't for Christine and Ellen who came a few weeks ago and purged things for me. Without the purging, I would have had no place to put things!
In the midst of playing, I was also trying to keep track of the companies who were coming today to pick up Mattie's hospital bed. Mattie refuses to sleep in this bed anymore, and he also doesn't want to sleep in the living room any more. So instead we carry him up the stairs to his bedroom. In fact, he can actually climb some stairs with assistance now. In any case, nothing is simple. One company has to pick up the bed and its frame, and another company has to pick up the special air mattress that was ordered to help Mattie's bed sore. Just trying to keep track of these two companies today, drove me crazy! Something about the rain, trucks, and coming to DC to park, makes for a very bad mix. One company did make it here today. So I am happy to report we are minus one hospital bed in our living room. I am SO thrilled to reclaim the living room back. After the bed disappeared, there were stacks of things everywhere. So I started reorganizing things. I told myself earlier in the day that I wasn't going to do this. I am still not feeling well, and this stuff is taxing. But when I saw that state of disrepair things were in, I couldn't take it. Even Mattie was helping. He helped to straighten out ALL his Lego sets. My new idea in my spare time is to create a Lego rent-a-center! I don't know about you, but you buy these sets, and their novelty runs out after a week. At which point I would like to give the thing back and get a new set for Mattie to play with. Maybe a new venture in my next life. Back to the story. So while I was straightening things out Mattie was building Lego sets. It kept him busy. Things still are not as organized as I would like, but it is a definite improvement. I certainly couldn't have made this much progress if it weren't for Christine and Ellen who came a few weeks ago and purged things for me. Without the purging, I would have had no place to put things!
After the massive clean up job, I sat back down with Mattie and we played more trains. I took a picture of his set up today, which he is very proud of! There are actually Lego structures now added to the scene. A big Lego convertible race car, a yellow Lego house, and a twin prop engine plane.I want to thank the Pisano family for being on call today in case I needed anything. I appreciate your support, and we want to thank the Keefe family for a wonderful Chinese food dinner. The gingerbread muffins were a huge hit. Mattie devoured one right away! We also love the riddles book, and the cute elephant on the front taking a bath. I hope that inspires Mattie!
This evening Mattie wanted to watch Dora the Explorer's, "Three Kings Day Special." We even printed out the paper crown on the Internet, so he sat and watched it while wearing the king's crown. Three Kings Day is a Christian holiday that celebrates the Biblical story of the three kings who followed the bright star of Bethlehem to bring gifts to the Christ child. In the story of the Bible the three kings, named Melchior, Caspar and Balthazar, brought gifts to the new baby. They brought gifts of gold, frankincense and myrrh. Three Kings Day is also known as The Epiphany. Mattie was glued to the TV for 30 minutes while Peter and I had a chance to eat. I did snap a picture of Mattie with his crown on that I thought captured the moment. Eating for Peter and I in a calm and sensible manner is a thing of the past. While eating, the phone is usually ringing (today's calls were the mattress people and then a courier delivering more medical supplies for Mattie), and it seems like thousands of things need to be done or caught up on during these down times. It is hard to chose what to do first, eat, or all the other things falling by the way side.
We received some wonderful things in the mail today. The first package came from Theresa. Theresa is a former student of mine and the director of guidance counseling at Northwest High School in Maryland. Her students created some beautiful Christmas cards for Mattie. I took a picture of four of the cards, but all of them were lovely and had touching sentiments inside. Thank you Theresa for doing this. 
I would also like Sherry B., Cynthia Green, DCMHCA/DCCA/DCSCA, and John and Goli to know Mattie received your mail and donations in our PO Box! Much thanks!
We want to thank Janice and Stephen Babcock of the Poobley Greegy Puppet Theater in Roslindale, MA for the DVD of one of their puppet shows, called the "Dinosaur Show." Apparently Peter visited this theater many times as a boy. We want to thank Jay von Saulfeld for the card he sent Mattie from Costa Rica. Jay adopted a turtle five years ago, and found out about Mattie through the Caribbean Conservation Corporation's holiday newsletter (you will remember that Mattie is tracking a sea turtle by the name of Roxana thanks to the generous gift from his preschool director, Kim). We want to thank Alan Rammer from the Washington Dept. of Fish and Wildlife for all the books, rulers, and other gifts you sent Mattie. That was very thoughtful of you! Lastly, we want to thank Rocio at the Caribbean Conservation Corporation for sending Mattie some candies, newsletters, a 2009 sea turtle calendar, and a big poster with their photos. These are such lovely gifts and we appreciate you all sending things to Mattie through our PO Box.
I have three e-mails I want to share with you tonight. My friend Karen and I practically grew up together. We have known each other since 6th grade. She e-mails me everyday and we usually have some funny e-mail chats at 11pm or midnight. Last night Karen and I were talking about chocolate and which chocolate brands we like best. Karen wrote, "Scharffenberger extra rich milk (that's her favorite!). I once took a class on chocolate at the New School. Scharffenberger taught the class. I know the entire history of chocolate. If you didn't know it, you are saving the world by eating chocolate. The tree needs to grow under the canopy of other trees. They pay people to not burn the rain forest and grow chocolate. See, chocolate is good." Karen's message made me laugh hysterically, because I never look at my chocolate consumption as having beneficial value for others and the world around me. Funny!
The second e-mail if from my friend, Charlie. Charlie is a former student of mine and a retired Lieutenant Colonel in the US Air Force. Charlie wrote, "I just wanted you to know that the military transporters group is praying for Mattie and the results of his scan on Thurs. The list is 175 strong with others who get it forwarded to them. I am sure that God will hear the prayers of so many, both near and far who have been touched by Mattie's story. Be strong of heart and keep the faith as I know you do. There will be many prayers winging their way to heaven in the next 48 hours." Thank you Charlie for getting the word out! I appreciate all this incredible support.
The third e-mail is from the Head Coach of SSSAS' football team. Dave and his family have been incredibly supportive of our family and as he knows, I think he is "big time!" I am even learning sports terminology through all of this. Coach Dave wrote, "Just thinking about you and praying for a great new year one day at a time. I continue to be amazed by Mattie and how he handles everything. The only thing that amazes me as much as that is reading about the two of you and how well you both handle all that comes your way. The apple clearly does not fall far from the tree. The three of you have blessed us all. I really enjoyed looking at the most recent pictures of Mattie’s creations with Legos and boxes as well as the nature stroll. I have to tell you that the picture of Mattie laying on top of Peter on the floor is as good as it gets. What a great picture! Keep hanging in there and know that we will never give up."
I end tonight's blog with a song I like to sing to Mattie, "You and me against the world." Some of you may remember Helen Reddy and her beautiful voice. She and Kermit the Frog (another favorite of mine) are singing this song together. It is ironic, I used to sing this song to Mattie before his illness, but now the song has even more meaning. Funny how cancer does that to your life. Everything is more meaningful and has more finality.
Mattie and Peter arrived home just after lunchtime. Marilyn (one of Mattie's former preschool teachers) provided us with lunch today. We loved the homemade tomato soup. Mattie actually ate it. This was amazing, he said it smelled good and drank a whole cup full. Wonderful. Thank you Marilyn for the bagels, clementines (my favorites!), and the brownies. But the big hit today was the massive Scooby Doo balloon. I am not sure who this balloon made happier... Mattie or Peter. Some of you may recollect that Marilyn gave Mattie a Scooby Doo balloon last week, but it flew away from Peter and Peter felt just horrible about this. Marilyn saved the day, and today Mattie was the proud recipient of a balloon that is half his size. Mattie was happy to pose for a picture with this great balloon. Thank you Marilyn for bringing a smile to our home today!
