It is amazing that Mattie had such a good day despite a terrible night of sleep. We basically have lost a bedtime routine with him. It is rather funny, since it took us over 16 months to train Mattie how to sleep in the first place (thank God for the Ferber method). He always had a set time he went to bed and a bedtime routine that once we found, actually worked. Now things are very loose, and we are lucky if he goes to bed by 10pm or 11pm. Our bodies are on hospital time, as I call it. Basically meaning that your body is always on hyperalert. Mattie fell asleep last night by 10pm, but by midnight, he woke up in a stupor and crying hysterically. Peter and I tried to assess what was causing him to be so upset. But he was too hysterical to communicate with us. Literally it took us about an hour to understand that he developed a headache and was in pain. Our wonderful nurse, Ellen, was going through this whole process with us. She has the most calming demeanor and the patience of a saint! She called for Dr. Daniel to come in (a lovely resident we have had the opportunity to get to know). Daniel decided Mattie could have Tylenol. Sounds reasonable right? Well wrong! When Mattie heard that he needed Tylenol, he went ballistic. Needless to say, Tylenol was never consumed. So I would say we did not go to sleep until 3am. Peter and I felt like walking zombies today.
However, despite our night, Mattie had a good day. He spent most of the day off of an IV, and he was able to move around the hallways using a mask. I can safely say that we played EVERY board game located in the child life closet, and we are VERY much looking forward to seeing Linda tomorrow!
Mattie's counts are on the rise. His neutrophil count is back up to 50, from 15 of yesterday. Dr. Abu-Ghosh feels that Mattie has the chance of going home tomorrow. His blood bacterial cultures continue to be negative, which is a very good sign (meaning there is not a specific bacterial infection present so far). In all reality we do not need the numbers today to prove to us Mattie is doing better as we can definitely see it! In addition to board games, Mattie designed his own colorful t-shirt (using fabric markers), and worked on several bead projects. Mattie then got humorous, and grabbed a marker and started drawing on the dry erase board in the room. Below you will see his interpretation of Peter. Not flattering to Peter (big head with spots, well actually if you really want to know, Mattie claims the spots are NOT spots at all, but "snot." The beauty of being six.), but Peter was a good sport as Mattie was laughing at his expense.
We had several visitors today. Julie came over and brought us lunch. It was wonderful to see Mattie drink a vanilla shake again! Mattie has sworn off milk products for several days now. Which if you know Mattie, you know this is equivalent to a national emergency. Mattie devoured several chicken nuggets and lots of shredded cheddar. It was nice to catch up with Julie and we appreciate all the support she has and continues to provide us. Later in the day, we had a visit from Pam Johnson (a co-founder of Voxiva, the company Peter works for), aka "Mrs. Claus." Pam's husband Stephen looks just like Santa Claus, so Vicki has unofficially nicked named Pam, Mrs. Claus. Pam has a knack with Mattie, and she intrigued him with a gift she brought back for him from Italy. Basically it was the Italian version of the board game Battleship (a very popular game this weekend). Also, Santa sent an early gift, a little mini soccer fooz ball game. It was perfect timing, because Georgetown was having an actual soccer game right outside our window, and Mattie was tracking it on his game. Thanks Pam for coming by and for the gifts!
Tonight, Ann came to visit and brought us dinner. When she came I felt tired and somewhat sick to my stomach, but began to perk up as our visit progressed. I am happy to report that Peter and I both ate dinner. Thanks Ann for all the tasty treats and your continued generosity and energy. Thanks Julie for also doing our laundry and bringing it to Ann to deliver. Your efforts are so appreciated!
I wish I could track on a map all the places in the world who have been touched by Mattie's story. Mattie continues to receive prayers from Italy, India, Iran, Peru, Spain, Nigeria, Rwanda, Tanzania, Kenya, Mexico, Argentina, Canada, all over the continental US, and today, from a person who heard about Mattie's story in Hawaii. All these prayers and positive energy give us great comfort and strength. Mattie received an e-mail today from a classmate who is on vacation in the Outer Banks. We opened up the e-mail and there was a great picture of Mattie's buddy Tim, on the beach. Next to Tim, in large letters in the sand, was written, "Hi Mattie!"
For those of you who read our blog, who e-mail us and Mattie, call us, and think about us daily, we thank you. When I think about all the wonderful people we have in our lives, I can't help but reflect of the Jimmy Stewart movie, "A Wonderful Life." For those of you who don't know this I am a BIG classic/old movie fan! At the end of the movie, George Bailey (Jimmy Stewart's character) receives a gift from his guardian angel, Clarence. Clarence gives George the book of Tom Sawyer with the following dedication, ".... no man is a failure who has friends." I feel as if I did something right in my life because I am surrounded by people like you. Too bad it took such a tragedy in our lives for me to clearly see what was there all along. God bless you and my Mattie!
3 comments:
Grammie says:To Victoria and Peter: I have never met many of the wonderful friends whose actions have nurtured you during Mattie's health crisis but I have been reading about them in your daily blog. Words alone cannot express my gratitude for their generosity to you. They have gone out of their way to shower Mattie with daily treats consisting of visits, playtime, personal attention and wonderful gifts all of which help him to remain a happy little boy. Most importantly, they have all helped to keep his spirit high, an important element in his fight against cancer. That incredible smile on his face in the accompanying photos has been made possible by their daily presence in his life. In reading the daily blog, Mattie's grandparents are very much aware of the generosity of your friends and are so grateful for all that you do to bring light and happiness to you during this difficult period in your lives. God Bless, Grammie
Hey Mattie,
Im happy to read that your doing better. I bet your happy to be back at home. That battleship game you got sounds cool. Hope you feel better soon.
Love,
Tarek
Hey Mattie,
Hows it going buddy? I read that you were doing better and that was great to hear. I heard that you got battleship, that is a great game! Well i hope to see you soon!
Love always,
Mimi
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