What a difference a day makes! Thank goodness the IV Kytril and IV fluids arrived last night. I called, Barbara, our in home nurse as soon as the package arrived and she walked me through how to administer both IV fluids through Mattie's central line over the phone. Within 30 minutes of the administration of Kytril, an anti-emetic, Mattie was beginning to feel better. He became energetic and interested in food. Something I hadn't seen for over a week. It was like reading the book, A Very Hungry Caterpillar, and Mattie was the caterpillar. He just ate, and ate! I savor those hungry moments, because they are few and far between. Because Mattie took a three hour nap during the day on tuesday, he wasn't eager to go to bed. So he and I stayed up until midnight. He thought that was very cool! I hooked up Mattie to IV fluids at 10pm and the in-home nursing company also supplied us with an IV pole. So at midnight you had to see the sight of Mattie and I climbing up the stairs to the bedroom with the IV pole in tow. It could have been on America's funniest videos. I think Mattie was more at peace and comforable last night, and really wanted to sleep through the night, but with over 100ml of fluid being pumped into his body per hour, the poor fellow was up every 90 minutes needing help going to the bathroom. So sleep has become a thing of the past in our home. Most days I feel like I am in some sort of fog, both physically and emotionally.
Mattie and I were both motivated for his condition to improve today, because he was invited to a special picnic at RCC, his preschool. This invitation came just at the right time, since we both needed this time out of the house and in the fresh air. When we got to RCC, all the teachers were waiting for him along with his RCC buddies, Alex and Witt. RCC, in my mind has always been a special place. I knew that from the moment Mattie entered the school on the first day. It is such a remarkable school that I always felt and still feel compelled to volunteer my time on their parent advisory board. I am indebted to RCC, because the teachers empowered me to appreciate Mattie and other children for the gifts they possess and bring forward, and particularly that all children are different, yet the same in so many ways. RCC's school symbol is the sun, and I always think fondly of the two years we spent at the school, because as many of you know raising a toddler and preschooler can be a challenging and sometimes isolating experience. However, RCC was my ray of sunshine during that time, and little did I know this sunshine would continue to burn bright and be such a vital part of our lives. The teachers today spent time with Mattie and with me and spoiled us with all sorts of treats and goodies. Coming back to visit can be bittersweet though because I was flooded with feelings and memories of all the good times at RCC. The good and healthy times. I just sat there thinking, how could we go from such a happy time to where we are now? But one thing is for certain, RCC accepts us for whatever way we show up and as always embraces Mattie and treats him like any regular or typically developing child. Thank you RCC for this special day out. You will always have a special place in my heart. Below are some pictures we took on the RCC playground.
Back Row: Margaret (Mattie's pretend room teacher at RCC), Vicki
Middle Row: Kim (RCC's director), Mattie, Kathy (Mattie's block room teacher at RCC), Alex
Front Row: Deb (RCC's OT)
Margaret, Vicki, and Julie
Left: Vicki and Kathy
Right: Alex and Mattie - swinging away!
I would like to tell you about a special envelope, sent from a special young lady, that we received in the mail yesterday. One of Mattie's RCC buddies, Ellie C., came to Mattie's fundraiser carwash last saturday with her mom and brother. Carolyn, Ellie's mom, tells me that Ellie was so motivated and inspired from the energy at the carwash that she went home immediately and decided to generate her own art creations and then sell them to her neighbors to generate funds for Mattie. Ellie felt like she wanted to do something that would help Mattie directly. Actually Ellie did a great job selling her art work, and the proceeds she generated will most definitely help Mattie. Ellie was concerned she did not raise enough money, but in all reality what Ellie gave to us is something so priceless that you can't put a value on it. When a six year old takes it upon herself to help another child in such a meaningful way, this is a gift that goes beyond dollars and cents. In addition to her generosity, Ellie is also a good artist. She sent Mattie an original piece, which she entitled, "A Mack Truck stomps out Mattie's bone bugs."See below!
Ellie's original!
On the electronic front, thank you Jenny P. (Mattie's art therapist, for the "big head" clay update), Wayne H. and the Commonwealth Baptist Church greeting, and Zachary for your nice e-mails and Karen, Emily, and Kim for your wonderful e-cards. Thank you Brian Boru (our feline friend) for the great gift you created of scooby doo activities. We also loved your picture of you doing the laundry!
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