Tuesday, July 14, 2009

Tuesday, July 14, 2009

I am thrilled Peter developed this for us. Please consider signing Mattie's LIVESTRONG Dedication Page -- For more information about this page, read the upper left hand side of the blog, or go to: http://www.livestrongaction.org/node/20612

Quote of the day: “The smallest act of kindness is worth more than the grandest intention.” ~ Oscar Wilde

Mattie had a hard time falling asleep on Monday. He finally went to bed at 1:30am. Needless to say at that point, I was not sure if I was coming or going. Despite going to bed so late, Mattie woke up at 9am raring to go. We played for several hours this morning, and then got ready and headed to the hospital for his appointment with Dr. Matt Biel, his psychiatrist. Dr. Biel and Mattie have a very good rapport, and Mattie was instantly engaged. Dr. Biel, Mattie, and I spoke for about ten minutes prior to Mattie's session. Dr. Biel wanted to hear from both of us how things were going at home. He also asked Mattie if there was anything he wanted to talk about today in the session. Mattie's answer was NO! Actually, he found the fact that we were talking simply "BORING" and wanted to know when the playing part of the session was going to happen. Some of the responses Mattie gave the doctor today were absolutely hysterical. For example, Mattie told Dr. Biel that when Peter and I disagree or argue about his medical treatment, that we never solve any problems or create solutions. I simply laughed, because from Mattie's perspective he just sees and hears our conversations, but he doesn't actually understand that these animated conversations are sometimes needed to come up with resolutions. Fortunately Dr. Biel and most of the Georgetown folks know Peter and I quite well. They practically lived with us for 11 months, so I am not as concerned about Mattie's off the wall statements. Before I left the session, Mattie told Dr. Biel that he had a secret. He then looked at me. I had no idea what was going to come out of his mouth at that point. Mattie knows I don't like secrets, and I told him to share it with us. He said to Dr. Biel, "you know I love my mom." So it was ten minutes of absolute laughter for me, to hear what can come out of my son's mouth!

Mattie had a good session with Dr. Biel. I hear that Mattie expressed some anger in the session, and most of it is coming out in aggressive play. Mattie will return for another session next week. While Mattie was in the session for 30 minutes, I had such high hopes to do things. I brought a book I have been trying to read for a year, I brought materials I had to read prior to the conference I am attending next week, and I also had to have lunch. I equate my feeling today to being on a bus tour. The bus stops, and the driver tells you that you have an hour to explore the city, but then tells you to make sure you are back on time, otherwise the bus will leaving. So today, I had to figure out what I wanted to do in this time period, eat, read, or what? I opted to eat, because I was sure Mattie wouldn't give me that opportunity once he was out of his session.

Once the session was over, I offered to buy Mattie ice cream, but he wasn't interested. I am more certain than ever that something is wrong with his stomach. He simply isn't hungry! We had an hour to entertain ourselves at the hospital before physical therapy began. Mattie did not want to go to the Lombardi Clinic, but instead wanted to take a walking tour of the hospital grounds. So in the heat today, I was pushing Mattie's wheelchair up and down ramps and so forth. I got my exercise, but that did not help my back what so ever! I am thrilled to report though that the transport chair arrived today! Thank GOD! So tomorrow, I will be operating with a 14 pound chair, rather than a chair that in my assessment must weigh close to 40 pounds.

Anna is unable to work with Mattie on Tuesdays, so instead her colleague, Cathy did physical therapy with Mattie today. Cathy has sat in on a few sessions with Mattie, so she is a known entity. I snapped some pictures of what Mattie accomplished today. He did tire easily, and I notice every time he exerts energy, he gets the chills and needs to be covered with a blanket.

Left: Mattie on the platform swing. Cathy is trying to get Mattie to stretch out "Steve," Mattie's right leg. Mattie managed to stretch his leg to a 29 degree angle today. Better than yesterday's 33 degree angle. Remember the goal is to get the leg completely straight, a zero degree angle.

Right: Mattie and Cathy worked on pulling these stretchy tubes apart, and then Mattie had to lift them up over his head. He was able to lift the tubes up passed his eyebrows.

Left: Mattie went back to the parallel bars today, and tried to walk across them. But his arms were tired from the stretching, and as he walks, he drags and stomps on his left leg. In addition, Mattie just doesn't have the back strength right now, and walks hunched over. All things to work towards, but I am just so pleased that Mattie is motivated and a good sport about this. We are using a behavioral chart this week too, and his goal at the end of the week is to win a magnetic toy car.

Mattie and I arrived home at 4:15pm and started working on his Scooby Doo chia pet that Jenny and Jessie gave him yesterday for winning the boat race. Mattie is very excited to see these grass seeds grow. At 5pm, Marisa came over to play with Mattie so I could get out. I could see that Mattie did not want me to leave, but I have to fight this temptation to cave into his demands. So I did leave, and met up with Ann. We had a pedicure together and sat and chatted. Each time I am out in the real world though, I find it very difficult to integrate myself. I see others around me walking around, shopping, and doing the mundane tasks of life. What is mundane to most people, is extraordinary to me. I long for mundane. While out with Ann, Marisa called me and told me that Mattie really needed me to come home. I was further away from home than Peter, so I called Peter and he came home and relieved Marisa. These are the complexities of leaving Mattie, I just never know when I will get the call to come back home. Sometimes I wonder is it even worth leaving? But I know I have to start somewhere, until he becomes more comfortable with his independence.

Tonight, Peter and I had dinner on our deck. Mattie came out to join us, not to eat, but to play in his sandbox. He was really enjoying being in the sand, which was a wonderful sight to see and hear. For just that brief moment, things seemed like they were back to normal, where Mattie could entertain himself for a period of time. We want to thank Dawnee for the wonderful dinner she provided us tonight. Thank you also for the beautiful dessert treats! You spoil us and we so appreciate your support.

After dinner, Mattie opened up a couple of packages he received. My parent's friends in California sent Mattie this fabulous Sponge Bob plaque. He loved it so much, he posed for a picture and gave his best Sponge Bob face. Thanks Phyllis and John. I also love the Wham-It, Anti-Stress device. Thanks for passing it along to me. Your note was really great, and I love how you suggested I picture certain faces on this inflatable character before I hit it to alleviate stress, it made me laugh.

As I write this blog tonight, Peter assembled the new wheelchair and Mattie and Peter already took it out for a spin. Now they are sitting on the floor building a ferris wheel erector set that my parents sent him. As we head into Wednesday, Mattie has been invited to a hospital event in the morning, in which a brand new white Hyundai will be outside the clinic. Kids will be allowed to dip their hands in paint and put hand prints all over the car. Mattie hopes to see Brandon at this event! Of course Mattie has physical therapy in the afternoon, and then Louise (a graduate of SSSAS and a Mattie supporter), will be coming over to watch Mattie so that Peter and I can celebrate our anniversary. Peter and I weren't planning on going out, but Ann and our supporters are really looking out for us. I also think Louise is a remarkable young lady. She just graduated from high school, and yet on top of the other things she is balancing, she wants to help us.

I end tonight's posting with two messages. One if from my friend, Charlie. Charlie wrote, "Monday was a full day with the party and physical therapy. As you said, Brandon and Jocelyn are wonderful role models for Mattie. I know that he watches everything they do and that you will see the results of that at some point. I know the discussion with Dr Snyder was both saddening and frightening for you; I will continue to pray that Mattie has no need of any further chemotherapy and remains cancer free so that decisions about its impact on his system are moot. I think Mattie had a really busy day and perhaps more exercise than anyone realized which might be part of the reason for his meltdown with Peter. I believe that Mattie's emotions ride very close to the surface and when he is tired, you have a breakthrough that he does not know how to manage at this point. You and Peter are doing a great job as parents and as role models; you are also providing good models who are closer to his age so I am confident that Mattie will relearn those psychological skills just as he is relearning his physical ones."

The second message is from my mom. My mom wrote, "As to your odyssey to the hospital and back, it must be punishing for you to perform the same tedious routine on a daily basis but what must add to the stressfulness of your plight is having to keep to a schedule, maintain a semblance of order at home and then rush off to the hospital with Mattie in tow, only to maneuver through an antiquated run down poor excuse of a parking lot in hopes of finding a parking space. If the elevators work, you are in luck but from my experience I know that there are many days when they are out of service making it even more difficult to haul Mattie around in a wheelchair. No doubt the wheelchair feels heavier with each passing day. The body can handle just so much physical abuse before it rebels. As you pass through the hospital doors, you must feel that you have already coped with more than you can handle and yet the important work of the day is getting started. I sit down and contemplate what your routine is like and I am overwhelmed at the thought that you can still function and stay focused on your mission to give Mattie every chance to regain his health and lead a normal life. You have done and continue to do an awesome job. Keep it up but in the process be good to yourself!!"