Mattie had a very restless night (sunday) of sleep. He slept from 11pm until 1am. But at 1am, there was no position I could put him in that he felt comfortable and at peace. In addition, he was sweating from top to bottom, and I had to open up the windows to cool him down. It wasn't until I thought about it this morning, that I think Mattie was having some type of withdrawal symptoms from the pain medication (the insomnia, restlessness, and sweating and chills - and he did not have a fever). I was besides myself last night and thoroughly exhausted, and at times I snapped at Mattie to try to go to sleep. But I quickly could see that this wakening was out of his control, and my insistence for him to sleep only made him cry and further upset. So we spent a lot to time together last night, jumping around, switching pillows, and so forth! At 6:30am, we gave up, and proceeded to officially wake up and head downstairs. Mattie and I had breakfast together, his favorite, oatmeal and homemade waffles. We had a slow morning, and then he got dressed (thanks Grandma for the great new shirts, they are working out wonderfully!), and was awaiting his buddy, Ann Henshaw.
At 11:30am, Ann came over and she brought with her loads of Mattie bake sale goodies and projects for Mattie. Ann and Mattie worked on several fun experiments, such as socks that grew when exposed to water, and a mystical garden (which illustrates the process of crystallization). Mattie and Ann also designed a halloween necklace, a halloween door hanger, and Mattie had a ball with his first whoopie cushion! Ann also brought Mattie a happy meal, with a toy car in it. Ann may not realize this, but this toy car made Mattie's day. Over the weekend, I purchased a happy meal for Mattie, with the same car, but Mattie lost a crucial part of the car at the hospital, and has been upset ever since, because he liked this car. In Ann's happy meal today, was the same car, and Mattie was thrilled! Thank you also for the big bag of Utz chips! Peter was thrilled to see this tonight when he got home from his trip. You have saved him a 4am journey at the hospital looking high and low for just the right potato chips. In addition, Ann delivered a wonderful care package to Mattie today from Katharina and Tanja. Thank you for the creative Martian Matters Alien Maker (Mattie is still working on it tonight!), the fantastic halloween flashlight, and the mazes and sticker books! Thanks Ann for coming over and giving me the time to run out and do some errands. It is very cute to see Mattie putting together the relationships he has with the Henshaw family. Afterall Ann is his buddy, Bob is Ann's husband and Mattie's surgeon, and Mattie's friend, Abigail is Ann and Bob's daughter. On some level, he knows this, but I think he finds it fascinating how each of them are connected to his life. Below you will see some fun pictures of Mattie's creations today with Ann.
Mattie's growing sock experiment! They are the cutiest puppy socks.
Mattie's mystical garden! It has the most delicate looking flower crystals.
Mattie making aliens!Later in the afternoon, my parents and I took Mattie out to lunch. We asked him if he was up to it, and though he looked tired, he felt like he wanted to go out. He fell asleep in the car ride to the restaurant, but was animated and happy during lunch. Mattie ate an entire pizza, applesauce, and cup of vanilla ice cream. Major food consumption improvement. At the restaurant, Mattie was enjoying the halloween things my parents bought him. You can see the skull and tombstone halloween lights they got him, and he opened them throughout lunch. See the pictures below.
Mattie with his halloween gear!
Mattie, Grammie, and Pop Pop!On the ride home from the restaurant, I fell asleep! Don't worry I wasn't driving! My dad was driving, but I think not having any sleep last night did not help my already depleted level of sleep. When we arrived home, Mattie received a lovely package from Caroline C. Caroline is a SSSAS student and she sent Mattie a lovely note, a stuffed animal that looks like JJ, and some very tasty chocolate chip cookies. Thank you Caroline for thinking of Mattie! Mattie then settled down and watched a movie with my parents and I. We are into halloween movies all week, as we are getting into the spirit of friday. While watching the movie, Peter arrived home from his trip, and Mattie jumped up, and walked over to Peter and gave him a big hug and rested his head of Peter's shoulder. It was very sweet and touching!
Mattie is currently building with Peter using legos, and is attempting to use both hands. We are encouraging him to do this, and we are beginning to massage his hand, as well as keeping it elevated to get rid of some of the expected swelling. But I am happy to report he has NO reported pain today, and is completely off of pain meds! Something to celebrate.
I received a lovely e-mail today from a former student of mine. Thank you Mary M. for following Mattie's story. Mary wrote, "I’ve been following Mattie’s blog each day and trying to figure out what I could write to you that would be of some use or comfort. Anything I thought of seemed so inadequate under the circumstances that you, Peter and Mattie are going through. One thing that kept coming to my mind though as I was reading your description of how Mattie was so amazingly brave dealing with his overwhelming and scary situation, was a recent book I read that was very touching and inspiring entitled “If I Live to Five.” This book was written by Dr. Fred Epstein, the founding director of the Institute for Neurology and Neurosurgery at Beth Israel Medical Center. A quote from the back cover of the book states: 'If I Get to Five is a tribute to the hidden strengths of childhood and the unstoppable life force that dwells within each of us.' From your description of Mattie, it appears he definitely has that unstoppable life force! Another quote from the book from Marian Wright Edelman, President, Children’s Defense Fund states: 'This book is a testament to the extraordinary depth, power, and resiliency of children’s spirits.' Mattie also seems to have that extraordinary depth, power and resiliency, which will serve him well as he struggles with the challenges of his illness." Mary I agree with you. Mattie definitely has an incredible spirit, and I have to get my hands on this book, because this doctor's observations and mine have been very similar!
On the electronic front, thank you Karen and Lorraine for your wonderful e-cards. We also thank the Harding family for a wonderful dinner tonight! You spoiled us today with food and gifts. Much thanks! Here's to wishing for a better night of sleep tonight!
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