Sunday night, before we headed to bed, Mattie wanted to open a gift that my friend Amany gave me. So we honored Mattie's request and let him open his gift. Amany gave Mattie a remote control car. Mattie was excited to see it being unwrapped, but I was concerned with how Mattie was going to play with it. I put the car down on the floor, and I held the remote control for Mattie and placed it by his right hand (the right arm was operated on about a month ago). What happened next was amazing, and speaks to the spirt of a child. Mattie used the spider exercise technique as I call it, and he slowly moved and crept his right hand fingers up the blanket and to the remote control. Then the next thing I knew, the left foot got into the action. So the right hand held one part of the remote control and the left foot held the second control on the remote. Needless to say when there is a will, there is a way. Mattie was very focused on playing with that car, and became creative on his own. So a simple gift actually became a great physical therapy tool, that we capitolized on today. The interesting part about all of this is that Bob predicted Mattie's use of his right hand. Bob admitted that Mattie's second surgery was aggressive, but besides the importance of removing the tumors, the added benefit to this surgery is that it forces Mattie to use his right hand (which was the weaker arm for several months because of the large tumor present in it). Needless to say, it is moments like this that we capture to give us hope. Mattie's spirit is to be admired and in a way is miraculous.
Mattie did wake up at 3:30am today, and he was very uncomfortable and crampy because he had not had a bowel movement since surgery. Mattie insisted on getting out of bed and using the bathroom. But at 3:30am, that wasn't going to happen, since it is a major production to move him. So we finally convinced him to sit on a bed pan. Needless to say, nothing happened, but it only added to his frustration. But 8am, he was very upset because he had to go to the bathroom but couldn't. Mattie's main complaint today was his discomfort with his foley catheter, and he assured me he couldn't have a bowel movement if connected to the catheter. While I was working with Mattie's nurse and doctors here at Georgetown to request that the catheter be removed, Peter had e-mailed Ann, who forwarded the message to Bob. Bob responded back to Peter's inquiry about removing the catheter, and then Peter forwarded me Bob's e-mail response. I am telling you this because thanks to technology (e-mails and hand held devices) the catheter was removed. The staff at Georgetown agreed it should be removed, but they wanted to check to see how Bob felt about this, and fortunately I was able to flash Bob's message at them on my blackberry. Mattie handled the removal of the catheter like a champ. He was happy to say goodbye to this tube!
At 11am, Anna, Mattie's physical therapy came in to help us transition Mattie to the lounge chair. Now if I were Mattie I would have thought twice about this transfer, considering I experienced the pain of this yesterday and knew what to expect. But instead, Mattie though apprehensive, was looking forward to heading to the chair. In fact, he asked Anna if he could use a wheelchair tomorrow. Mattie is quite a trooper. The transfer today went better than on sunday, which probably means that Mattie and I are both getting used to it. None the less, it does take four people to move Mattie. Mattie spent several hours sitting in a chair today, but unlike yesterday, Mattie did NO napping in the chair. Instead, he played with Lesley and Whitney (childlife interns) and had a great time. By the time I saw Lesley and Whitney later on, they were covered in stickers thanks to Mattie. Mattie played with his remote control car and worked with model magic. Mattie also had a visit from Jenny and Jessie. At one point I looked into the room and there were bubbles everywhere. All these ladies brought many smiles to Mattie's face, and I so wanted to take pictures, but I know Mattie is sensitive about pictures right now. But trust me, there was a lot of joy filling the room. Mattie also got a chance to play with Linda as well. So all in all, he had a rich and fun day! I appreciate all these women giving me a break today.
Somewhere in the midst of all of this, Mattie had a visit from Bob. Bob is pleased with Mattie's progress and we discussed next steps and how to taper off Mattie's pain medication. Mattie was proud to show Bob how he could use his remote control car, and Mattie heard about the Lego Robotic competition that Bob and his daughter, Katie participated in on sunday. This caught Mattie's attention, especially since Mattie is quite a builder. When Mattie was two he loved to play with a screw driver and disassemble and reassemble his hotwheel and other toy cars. Mattie is fascinated with how things work and function. It was interesting to see Mattie's reaction to Bob today, because Mattie did not seem apprehensive to see Bob and held no grudges. The beauty of being a child and living in the moment, because if you recall during Mattie's dressing change, he said a lot of mean things to Bob. During Mattie's visit with Bob, Dr. Jeff Toretsky paid a visit to Mattie. Jeff was impressed with how Mattie was doing and he shared with me some tentatively good news, that the initial examination of the three other tumors reveal a great deal of cell death. We do not have a percentage of necrosis yet, but Jeff wanted to share what he learned so far.
Christine came to visit today and brought lunch for me, and a happy meal for Mattie. Mattie was REALLY looking forward to a vanilla shake and food. Mattie is back on a vanilla shake diet. This is his food of choice this week! Thank you Christine for the Scooby book and the book of kids' jokes. Mattie will love this. It was nice to chat as well. Christine and I were playground buddies at Mattie's school and we used to meet on a regular basis so the kids could play after school. It is always nice to chat and deepen our friendship.
At around 4pm, Anna came back and helped us transfer Mattie back into his bed. This went pretty well, but once back in bed, Mattie slept for about two hours. This moving around is definitely very wearing for Mattie. It was a first, while Mattie napped today, so did I. In fact, Jane (Mattie's nurse) could see that no one respects my sign not to enter our room, so she created another sign today, and she monitored the door to make sure we were not disturbed. I wish I could say the nap helped, it certainly did not hurt, but I feel very tired. When Mattie woke up from his nap, he was agitated and in pain. We tried anti-anxiety medication first, which accomplished nothing, and then moved onto pain medication. Mattie ate a little dinner, and then insisted on going to the bathroom. By this time Peter was here, and helped me with this project. This time Mattie was successful. What a bowel movement it was. It was like a monumentous occasion once it happened, and the joke on the floor was that our room was so odiferous, that nurses came in to check on us. Mattie was thrilled with this accomplishment, and decided to play a little basketball on the side of his bed with his right hand.
We want to thank the Chiaramonte family for a beautiful and nutritious dinner. We enjoyed it, and Mattie loved the apple pie pastry you brought us. We also want to thank you for the wonderful frog Webkinz and the very meaningful and touching plaque you presented to us. Liz explained that she bought this beautiful wood plaque back in July, while on vacation, once she heard about Mattie's diagnosis. I took a picture of the plaque so you could appreciate it, and I love the picture Liz selected to place in the frame. I have the plaque on display in Mattie's room, and it will be a gift I will always cherish. Thank you Liz!
On the electronic front, we want to thank Brian Boru, Susan, Emily W., Karen, Lorraine, Eric & Nataliya Goodman (author and illustrator of the Flightless Goose book), and Liza B. (one of Mattie's favorite volunteers) for their e-mails and e-cards. Liza e-mailed Mattie tonight and plans on visiting Mattie in the hospital tomorrow night to continue to read Harry Potter. We are very blessed by all our wonderful blog readers who are touched by Mattie, his story, and your willingness to be there for us throughout this time.I end tonight with an e-mail Ann forwarded to me from her aunt and uncle in Boston, MA. Though we do not know Ann's extended family, they are reading Mattie's blog, and not unlike Ann and Bob, want to support us throughout this journey. Ann's aunt wrote, "We've been reading Mattie's blog regularly and were thinking about Christmas. Are you planning on having him at your Santa party if he's well enough? If not, Ed said Santa would go visit him (either at his house or in the hospital). Just a thought. We feel so bad for him. Ed said Santa would go anywhere to cheer him up." We thank you for thinking about ways to make Mattie's christmas a special and memorable one.
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