Sunday, December 14, 2008

Sunday, December 14, 2008

Mattie had a decent night of sleep last night, and his stomach is feeling better as well. Nexium seems to be doing the trick. Mattie's absolute neutrophil count is still zero, so we sit and wait until it reaches at least 250 to be discharged from the hospital. Mattie had a good day with Peter, doing puzzles, building, doing arts and crafts, and listening to Christmas music. This afternoon, my parents came over and spent several hours with Mattie. They brought him a wonderful pirate 3-D puzzle, which they worked with him on while Peter and I went out to lunch together.

Peter and I really needed the chance to catch up with each other. We haven't done this in so long, we actually sat in silence for a minute to regroup. We talked about Mattie's care, how the next few weeks will work out, and our expectations for the January 12 scan and how to attack the problem if the results are not what we are hoping for.

I spent part of the day working with Christine on Christmas present ideas for Georgetown nurses and staff. Christine spent most of the morning going through this with me, and by the end of the day things were really coming together. As most of Team Mattie knows I am in no mood to do Christmas shopping or for the most part to celebrate Christmas. So Christine volunteered to help me brainstorm gift ideas, purchase them, wrap them, and help me distribute them. We are not talking about just one or two gifts either. By the time I finished the Georgetown list, I had more than 26 gifts for Christine to work on. I can't thank Christine enough for helping me. Christine is a good friend, and I love her level of organization and efficiency! I am so fortunate to have such a friend in my life.

This evening I spoke with Mattie's nurse about my concern that his reaction to the first platelet transfusion wasn't well documented. It seems to me that there should be some sort of alert that anytime a platelet transfusion is ordered for Mattie, that it signals them to the fact that Mattie needs to be premedicated. Peter and I made enough of an issue out of it tonight, that Tracey, Mattie's nurse, fixed the problem. I just worry what would of happened to Mattie if Peter and I weren't around. There have to be safety checks in the system!

We want to thank the Doane family for their wonderful Italian dinner feast. Mattie loved the spaghetti and the pastas and cheesecake were great! We are slowly opening and savoring the gifts you brought us. That was SO thoughtful and generous of you, and we look forward to opening more tomorrow. But the Godiva truffles are very special, and Mattie loves the holiday cookies and the pen. It was wonderful to see Abby and Emily tonight as well. Mattie did not want them in the room, but both girls told me that Mattie was their friend and that they wanted him to get better and that they even made a handmade gift for him! It was darling, and so sincere. Thank you for all your support!

We also want to thank Kim for the wonderful kaleidoscopes. Mattie and I constructed one of them today, and it was fascinating to learn the process of putting a kaledioscope together. What a beautiful gift, and I remember when I received my first kaleidoscope as a child. In fact, I loved it so much, I saved it and passed it down to Mattie. Mattie always loved it, and now he has his own special one! Thank you Kim. Also Mattie received a great set of Knex from his Grandma and Granddad. Mattie loves building and using his hands, so this will keep us busy tomorrow.

As I was heading to the microwave tonight to heat up Mattie's spaghetti, I ran into Dr. Bob. I was surprised to see him, because most doctors don't make visits on a sunday night. But again, Bob is more than just our doctor. Bob spent some time with all three of us, and I think he got a kick out of Peter and Mattie trying to assemble this 3-D pirate ship. The 3-D puzzle was such a challenge, that Peter got out the hot glue gun to attach the pieces. Thankfully Jenny and Jessie left us the glue!

As we head into monday, I am preparing Mattie for the fact that my parents are headed back to Los Angeles on tuesday. They have been with us since September, and have been through many highs and lows through Mattie's illness. Mattie has been angry at a lot of people lately, and my parents have been the recipients of a great deal of this anger. This is not easy for anyone to take, especially for grandparents who have really been present for a great deal of his development. They have played a significant and active role in his upbringing, and I can only imagine how hurtful his behavior and treatment has been for them. However, they rose to the occasion, and respected when he needed his space and when he needed attention. I certainly understand that my parents have to go back home, but it will be another adjustment for us. It is always nice to have an extra pair of hands around, and of course to have the emotional support. Seems to me you always turn to your parents in such times of crisis, and they have really been there for us. I have appreciated their time, care, generousity, and support over the last couple of months, and probably don't tell them that enough. However, I know they will be back in the spring for Mattie's birthday and his Osteosarcoma walk! I pray that things are better by the spring!

As I sign off for tonight, we are listening to Christmas music in our room, and Mattie's feet are touching the floor and he is dancing in his wheelchair. I just peeked at him, and he gave me a huge smile, and he is wearing a great jingle bell that the Doane's gave me. He looks like a cute elf who is jingling to the music. But I am biased. Let's keep hoping that his blood counts rise and that we can get out of here ASAP because we return next monday for chemo.