Wednesday, January 4, 2023

Wednesday, January 4, 2023

Tonight's video was taken in January of 2009. We were in NYC with Mattie, so that he could start his experimental immunotherapy treatment. This large cancer institution had a warehouse style child life playroom. The room was enormous and extremely loud. The video will show you this nightmare. You can hardly hear Mattie speak. This was a night and day difference from our experiences at Georgetown. Mattie's child life specialist back at Georgetown, contacted the child life team at the NYC hospital. She told the team to save packing boxes for Mattie, because he loved to create with them! I can assure you the NYC team thought this was an ODD request and thought Mattie's creativity was equally strange. As you can imagine I did not see eye to eye with this team and for the most part they stayed far away from us while we were at the hospital. Being there was a complete 180 from our experiences at Georgetown. In any case, this short video clip shows Mattie explaining to us what he built... an airplane. I will never forget carrying this big plane through the hospital, into a taxi, and to the hotel room! 

Quote of the day: Kind words don’t cost much. Yet they accomplish much. ~ Henry James

After I got my dad ready today, Peter took him to the memory care center. I then got my mom in the car and we headed to the hospital so she could have an evaluation for physical therapy. My dad's therapist was so good with him, that I wanted my mom to work with this same therapist. I did a lot to make this happen, but I was successful. My mom is a completely different patient from my dad. She is far more emotionally taxing and has a lot of anxieties. So you have to be able to manage her behavior and attitudes in order to effectively help her. I do not think her previous therapist was up for the challenge. I found the therapist to be like a limp noodle! My dad's therapist and I share a very similar energy style and outlook. I believe positive energy can make one feel hopeful and motivate change! 

I have seen Cassidy work with my dad, and now I see her work with my mom. Which is fascinating. She is consistent but of course because they have a different personality style, she has adapted to meet my mom's style. My mom has issues with walking, balance, and posture. The exercise you see below (sit to stand) is one that my mom has trouble doing. She needs a lot of support to go from sitting to standing. Here is the conclusion I came up with today! Of course it wasn't earth shattering, but it confirmed my suspicions. Yes my mom does her PT exercises at home, but she isn't doing them correctly. Therefore, moving forward, I will need to supervise her in order to make sure she is actually developing the skills we hope to achieve in therapy. Of course that means ONE MORE thing onto Vicki's already very full plate. 

It was rather hysterical really, as my mom told Cassidy at the beginning of the session today that she does sit to stand exercises daily, with no problem. I knew this wasn't the case, and naturally when my mom tried to do it during the evaluation today, she couldn't! That frustrated my mom to no end, and we had to work on her "I CAN'T DO IT" attitude. Needless to say I have my work cut out for me, but once again, I have added more running around to my weeks, as my mom needs to go to the hospital twice a week for therapy for the next three months.