Wednesday, October 29, 2008

Wednesday, October 29, 2008

Mattie had another wild night of sleep on tuesday. Basically he was up every hour. We have gotten to the point, that we do not like the night hours. Mattie has FULL days, and you would think with his level of activity he would be exhausted. I think his popping up and down last night got to him this morning. When he finally fell asleep at 6am, he slept until 10:30am. He woke up crying at 10:30am, but he was willing to get up, get dressed, have breakfast, and plan his day. This morning we worked on several puzzles and he was motivated to get out his dragonfly kite (thanks John P.!)and fly it. You will see some pictures below that I captured of Mattie today. He is such an active fellow, that I fear what the near future holds for him when he can't have much use of three of his limbs.
Mattie and his dragonfly kite!

Mattie was proud of his kite taking flight! When I watch him with his kite, it is as if he feels in control, and you can see the joy in his eyes that he is getting this to work!

Mattie had a visit from JJ and JP (JJ's owner) today. JP bought Mattie a lovely pizza (which Mattie enjoyed thoroughly tonight!) and gave him some wonderful homemade marshmallows. Mattie is a happy camper, and enjoyed watching JJ outside running around and enjoying the cold. JJ and JP are an important part of Mattie's life because they add a certain amount of comfort and support to his daily routine. My parents and I took Mattie out to lunch today. Something he likes to do lately! He ate beautifully at lunch and played word scramble games, mazes, and of course the old faithful, legos. Some people don't leave home without their AMEX card, well I don't leave home without Mattie's bag of legos. I made that mistake once, and learned my lesson dearly. Mattie was in good spirits throughout lunch, and was looking forward to his computer lesson with Mary Dressendorfer (Mattie's SSSAS technology teacher) later today.

Mattie and I spent a good chunk of the afternoon going through his e-cards and photos again. He gets a lot of joy looking at these things. I also appreciate the great halloween websites many of you have sent to Mattie. When Mary arrived, Mattie was engaged and eager to learn. Mary shared a fantastic website with us that she is designing. One of the links on her website is to www.starfall.com. What a fabulous site, where Mattie was working on reading skills and having fun following the instructions to make his own jack'o'lantern. Mary worked with Mattie for over an hour, and I had the chance to go upstairs sit on my bed, and I actually turned on the TV and watched a mindless movie (well it was a Sandra Bullock movie if you must know, who I happen to love). It was glorious! Our family is enjoying the opportunity to get to know Mary. She is a very sweet, compassionate, understanding, and bright individual, and we are so happy she is in our life. See a picture of Mattie and Mary in front of Mattie's Haunted Mansion!


Mattie and I continued to fly his kite later today, until Grammie, Pop Pop, and then Daddy arrived. Thanks to the Parker family we had a lovely chinese food dinner, and Mattie loved the glow sticks, pen, and flashing wand. Thank you for these fun gifts. Mattie enjoyed the happy meal too! My parents had a lovely chat with our neighbor, Malcolm today. Malcolm, gave us a VERY generous gift card to McCormick and Schmick's. That was very thoughtful of Malcolm to treat us to a nice dinner. Malcolm is a very caring neighbor, who is a devoted caregiver to his mother, and his warm smile, compassion, and support each time we see him, means so much to us.

I would like to acknowledge Katie May tonight. Katie is a senior at SSSAS. Katie and I actually share a lot in common such as we both love to dance, we love helping other people, and specifically we both are very focused on Mattie's treatment. Katie writes to me weekly and she has visited Mattie at the hospital as well. Katie spoke with her advisor and the head of the upper school of SSSAS and brainstormed a school wide bake sale that is happening thursday through saturday to support the Mattie fund. Katie's flyer features a wonderful picture of Mattie in a superman costume. The flyer says:

Our Superhero
Mattie Brown
Please help us support Team Mattie!
Donut Sale
Thursday, October 30th & Friday, October 31st
Upper School Lobby at 7:45 am
Donut & Bake Sale
Saturday, November 1st
at the Football Game (Senior Day)
by concession stands at noon

Thank you Katie and the SSSAS upper school for helping our family!

On the electronic front thank you Brian Boru, Susan, Karen, and Lorraine for the wonderful e-cards. Thank you Susan D. for the fabulous singing card that came in the mail today! All of these musical things bring an instant smile to Mattie's face. I appreciate all of your e-mails and support. There are times I feel like I live in the twilight zone or a parallel universe. The world is revolving around me, and life is going on for everyone else, but not for us. I can see it going on, but I can't stop it or slow it down, all I can do is continue to plug away doing the best I can. Mattie is VERY much looking forward to seeing Linda tomorrow. Linda has planned some halloween activities thursday, and funny isn't it, that I would be saying we are looking forward to returning just for the day to the PICU?!