Wednesday, July 8, 2009

Wednesday, July 8, 2009

Quote of the day: “Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out. It's all about timing.” ~ Stacey Charter

You would think between physical therapy and a long walk outside last night with Peter before bed, Mattie would be tired by the end of the day. But sadly he isn't. Mattie was up until 2am on Tuesday. Needless to say, you know who was up right along side him. Last night we played a made up race car game and then eventually took out his computer and we designed a lot of wonderful pictures on it. Mattie even showed me how we could record our voices on his computer and play them back. So he decided to sing a song and record that. He made up a song about loving me. It was very cute, and it is in these simple and spontaneous moments, you see why this torture is all worth it. We had a fun time playing together, but by 2am, I couldn't play another minute. The lights went off, and I could hear Mattie still up, but eventually he fell asleep.

This morning, I woke up before him, as I usually do. While I was in the shower, I could hear someone pounding on our front door. But the pounding did not stop. So I got myself together quickly in order to find out who it was. It was someone to fix our air conditioning unit. But the fun did not stop there. Over the course of the next three hours, people keep knocking and coming on in. At one point I had four different people fixing something in our home. You may be asking why was all this going on? Well things have been breaking down in our home for months now, we report them, but because we haven't been home to follow up on these repairs, they haven't gotten done. Some of the complaints are serious issues, such as our balcony door was sealed shut and we haven't been able to open it for months. This happened when the complex did that massive construction job I told you about back in April. Well now it is July, and NO ONE ever responded to our several calls to repair this door. So in my usual fashion, which I perfected this year out of necessity, I called our complex manager and gave her a mouthful about my disappointment about service and follow through. This explains why people were jumping today, in fact, almost all the things I have requested to be repaired over the last months, have been addressed today. Amazing, isn't it?! One of the people who came to fix my screen door, was absolutely hysterical today. He took out his cell phone and had a personal call for 30 minutes on my balcony. Under most normal circumstances I would have said something, but today, I was more fascinated by his total lack of regard for his job and the fact that he could see I was busy with Mattie. But all these people working in our home and managing them was a little more than I bargained for today.

Mattie was just watching all the action around him as things were getting repaired, and this 30 minute personal phone call was so noticeable that even Mattie asked me why this man was on the phone for so long. In the midst of all this chaos, I did get Mattie ready for his physical therapy appointment. I find it interesting to note, that yesterday and today, Mattie has brought a toy or something to play with to physical therapy. But it is a mindful selection, because he is bringing something he can incorporate into his sessions. Yesterday was these bendable sticks called Bendaroos, and today Mattie brought in these bug toys that can crawl down surfaces such as mirrors and walls. Mattie thought that he could use the bugs during his standing and reaching part of the therapy session. Anna was thrilled to see Mattie's initiative!

Mattie had another good physical therapy session today. He is motivated to complete his behavioral chart, because after accumulating so many stickers on the chart he can receive a rubber ball which is being held for him in clinic. Mattie did exercises to strengthen his right foot, which entails standing, stretching, and reaching. You can see Mattie having a foot race with Anna on a mirror. The rubber balls attached to the mirror were part of the obstacle course Mattie set up.

Mattie also spent some time standing up and throwing balls into a barrel. He actually did very well on this task, and we kept reminding Mattie to put pressure on his right leg while standing. At the moment, he really shies away from using this leg altogether. I love this picture though, because you can see the ball Mattie threw in mid air, and he is very focused on it and for it to make it into the barrel. Mattie also allowed Anna to stretch out his right leg. So overall, I would say it was another productive and successful physical therapy session. Unlike how therapy progressed upstairs in the PICU, therapy now is still fun, but it is more focused, productive, and tailored to meeting the goal (which is to get Mattie stronger and up on his feet). I can actually feel the difference. So hopefully so does Mattie.

After our appointment was over, we got back home, and Mattie continued on me to play with him. However, I needed a break, my back was aching from lugging the wheelchair, and I needed to take Advil today in order to proceed on. I have talked to Anna and Catherine, our case manager, about a lightweight transport wheelchair. Thank you Lauren for mentioning this and I thank Charlie for capturing the information on line for me!

When Peter came home, we encouraged Mattie to eat something, and helped him a bit. But then Peter and I sat outside on our deck for 30 minutes to eat dinner without being interrupted. We wanted Mattie to join us, but he refused. I am trying to claim back time where we are all eating together again, and I figure if Mattie doesn't join us, maybe observing us will be helpful or inspire him. There has been a lot lost this year, and family meal times is just one of the things I could name right off the top of my head. We would like to thank Jill K. for a lovely Greek dinner! Thank you Jill for supporting us all the way from Canada!

As I am writing this blog, Peter took Mattie out for another walk. They have been gone for 50 minutes. I wish the fresh air would knock Mattie out, but at least the change of scenery is good for him. As we head into Thursday, Mattie has an echocardiogram at 11:30am, and then we will spend the rest of the day in the Lombardi Clinic until Mattie has his physical therapy appointment with Anna at 3pm. It makes no sense for me to run back and forth with Mattie, especially moving that wheelchair. This echocardiogram is important, because it will dictate whether Mattie qualifies for more chemotherapy next Thursday and Friday. So stay tuned.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Getting well is a process. What you have been through in the last year was not about getting well, it was about survival. Now that you've come through that you can begin to look around and plan for the healing process. I agree with you that experiencing camp with other survivors would be a good move for Mattie. He would be with counselors and children who understand what he has gone through and the situation would be set up so that he could do creative and interesting things in spite of his physical limitations. Many of the children who attend these events get to try things they did not get to do before they had cancer like horseback riding or other sports that use adapted equipment. Tuesday's physical therapy session looked like it went well and Mattie clearly worked very hard at it. It appears that the talented therapists have come up with a reward system that will work for Mattie. Learning to use muscles that are unaccustomed to full range of motion or bearing weight is very exhausting even if it appears to be a game. The positive side of this is that the exercise will probably help Mattie sleep better. I have to tell you how much I admire your well thought out and measured response to Mattie's statement of "not liking himself". It is difficult to shut down the auto response of "that isn't true" or "but we love you" etc, to really hear what is behind the statement. I think that is so important and reinforces Mattie's sense that his concerns are heard and validated. He needs this to be able to move forward into healing."