Quote of the day (thanks Charlie!): "Hope sees the invisible, feels the intangible and achieves the impossible."
Wednesday night was so unusual. Mattie fell asleep at 8pm, and had a decent night of sleep (of course other than getting up to go to the bathroom from all the IV fluids, and having to do vital checks every four hours). I thought he was so tired last night mainly because yesterday was the first day post surgery without the bandage on his right arm. The arm is free now, and somewhat sitting in a sling. I say somewhat because we can't seem to find the right size sling for Mattie to support his arm. In any case, he is moving his arm very carefully.
We began our day with a visit from Anna, Mattie's physical therapist. Mattie and Anna continued their water gun battle, and then Mattie also worked on some additional exercises. He was mostly compliant with Anna's requests. During Anna's visit, Linda came in, and helped talk with us about Mattie's surgery next week. It is ironic, no matter how I think I have prepared Mattie, something always surprises me. Mattie thought he wasn't going to have another surgery until the first surgery site had healed. In addition, when he heard he was having surgery next week, he thought it was only going to be of one more part, not all three at one time. It was fascinating to see the wheels turning in his head, as he began to think about the consequences of three surgerical sites. So the questions started to roll, such as how will I be able to get dressed? What kind of pants will I wear? How will I be able to walk and get around? Why is Dr. Bob doing another surgery, since he isn't healed from the first surgery? All great questions, and we answered them one by one.
I found Mattie's questions so meaningful, that it reminded me of an e-mail I received from a friend, and former RCC parent, Michelle. Michelle wrote the following to me back in the end of October: "Vicki, I was reading your blog this morning before heading in to work yes, I'm addicted, even while on a work trip to Ohio!); reading about Mattie not wanting to leave the room with his back exposed gave me a thought. A friend of mine has a non-profit corporation called Sew Much Comfort (www.sewmuchcomfort.com) that makes adaptive clothing for wounded veterans. Long story short, when her son was battling cancer and needed multiple surgeries, she adapted his clothes - pants for Mike - by removing the seams and replacing them with velcro. This allowed Mike to wear "normal" clothes that he could get on and off, and the clothes could work around the various apparatus he had to deal with."
I think Michelle's idea is fantastic, and I spoke to Anna (Mattie's PT) about this today. I am trying to track down companies that make such adaptive clothes for children. I want to get this addressed ASAP, since Mattie will need such clothes in alittle more than a week from now.
After Anna's visit, Mattie and Linda went to the Childlife playroom. It was in that room, that Mattie worked on a birthday present for Peter. Mattie was going to give the present to Peter next week, but when Mattie saw Peter tonight, he was too excited and insisted on giving him the present. Mattie had help gift wrapping the present, but basically designed and wrote in his card with his left hand, and created a beautiful birthday cake out of model magic for Peter. Below is a picture!
Mattie had a visit today from Alison, who met all his food cravings, with a happy meal, a pizza, and a hot dog. He was all set. He slowly made his way through all the food throughout the day! Thank you Alison for a lovely lunch and the time to chat, and thank you Linda for this opportunity. When Alison and I got back from lunch, we found Mattie in his room with Linda. Mattie and Linda were playing the keyboard together, "Mary had a little lamb" to be exact! Caroline E., I think you would be proud! Then Mattie proceeded to tell me that he is bored with me as his mom, and he wished that Linda were his mom. Linda answered Mattie's request in a lovely way, saying that if Mattie spent as much time with her as he does with me, he would be bored of her too. At first, I was taken aback, but then I realized where his comments were coming from. It is so natural, he wants the opportunity to be able to be separate from me, and this circumstance doesn't lead to this kind of independence. Mattie continued with this line of reasoning and Alison sat down and talked with Mattie about his comments directed at me, and then she just started tickling him and redirecting his negative energy. By the time she was finished with him, he did not even remember what he was complaining about. It was wonderful!
Mattie then had a visit from Jessie (one of Mattie's art therapists). Jessie is a lovely person on the inside and out, and she is very creative in her approach to projects. She brought with her simple things like popsicle sticks, a box, a glue gun, and this interesting paper that transforms into a sponge when soaked in water. By the time Jessie and Mattie were finished, they transformed the box into a mouse's house, and designed a mouse out of model magic, created pieces of cheese for the mouse, and designed popsicle exterminators. Below you will see the whole creation! It was creative, and listening to Jessie play three different characters was a riot, I haven't laughed so hard. Thanks Jessie for a lovely afternoon, the play continued after your visit.
Tonight the mouse box game continued with my parents, as they played with Mattie and his mouse friend. However, toward the end of the evening Mattie was getting tired and crabby. He is eating up a storm this evening, watching Tom and Jerry, and is excited about the opportunity of going home tomorrow. We want to thank Alissa M. for a wonderful dinner tonight. Alissa is a former student of mine, and I so appreciate her support and kindness. I am blessed by having the best students.
On the electronic front, we want to thank Karen and Brian Boru for their lovely e-cards! We are ready to leave the hospital, as we try to prepare for the huge week ahead of us. At the moment both Peter and I are exhausted, but I guess 15 weeks of dealing with this can do this to a person. Unfortunately there is no end in sight, and frankly the near future looks daunting. We appreciate all the support that is being extended to us. It is a powerful force to know we are not alone.
1 comment:
It looks like Mattie is recovering very well!
We went on Emma's Make a Wish trip to Disneyland this week and while there I met up with a mother of a young man who has been NED (No evidence of disease) from osteo for 2 years and is in college doing well. I thought you might want to know that the necrosis of his original tumor was less than 70 percent and they switched his chemo to ifos/etopside after and he is doing great today!
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