Quote of the day: "Each day of our lives we make deposits in the memory banks of our children." ~ Charles R. Swindoll
Mattie was tired by 9:15pm on Monday. He requested to go to bed. I couldn't believe that he was actually tired at an appropriate hour. So we accommodated him and got him ready and into bed. However, it was too good to be true. He was in bed but he couldn't fall sleep. He finally went to sleep at 2am. Somehow whatever pains Mattie seems more pronounced at night, and he is unable to go to sleep until he receives Morphine. Needless to say I was getting frustrated with Mattie by 2am. That may not make sense to our readers, but picture yourself so exhausted, and yet knowing that you will be awoken throughout the night for bathroom runs, and then have to perform this whole routine the next day and the day after that, indefinitely. This caregiving routine has no end in sight, and that is hard enough, but add in non-stop playing, and I am basically finished.
Mattie slept in this morning, and as he sleeps, I try to take advantage of that. When Mattie woke up, we had a busy day together, despite never leaving our home. The isolation of not leaving our home reminds me of Mattie's newborn days. I remember these times of isolation very well, but now the isolation seems much worse because I am not raising a healthy child and we don't know what the future holds for any of us. Mattie had a hard time figuring out what he wanted to do today, but fortunately my lifetime friend, Karen, sent Mattie a big box of BUGS! All kinds of plastic bugs. Bugs that grow when they get into water, glow in the dark bugs, and even baby bugs. It was the perfect gift for Mattie and it occupied us the ENTIRE day. We washed the bugs, classified the bugs, you name it, because we did it. We even ended the day by allowing the bugs an opportunity to swim in a kiddie swimming pool. The pictures don't do this collection justice, but when I tell you we are surrounded by hundreds of bugs today, I am being literal!
Left: Mattie with all his bugs around him. He really loved the bee, which is perched on the pink basin.
Right: A basin filled with growing bugs!
Left: Mattie, his aliens, and a pool FULL of bugs!
Right: The pile of bugs drying after their swim!
Peter checked in with me periodically today because he knew it was going to be a long day for me without any distractions. Mattie wanted to play and stay home, so we never got outside for fresh air. When Peter arrived home after work, he found me trying to inflate the minipool that Tanja gave Mattie. I am sure I looked like a sight, because I resorted to using a bicycle pump. We dragged the pool outside and this forced Mattie to come outside and get fresh air. He had a ball playing with the water and his bugs, and this gave Peter and I a minute to eat dinner. We want to thank the Katcher family for a lovely dinner. Despite Ann giving me a very clear dinner schedule, I am unable to keep track of the days of the week. So I apologize for thanking the wrong people for certain dinners. Thank you Tanja for dinner on Sunday, and Mirela for dinner on Monday! We appreciate all the continued support!
I was determined to find a way tonight to administer Mattie his calcium/vitamin D and phosphorus supplement. Peter and I have been trying all sorts of things but this vitamin solution tastes just awful. So tonight I mixed it with a small amount of vanilla ice cream, and Mattie ate the entire thing. I hope this is a trend. We are also having much success too with getting Mattie to wear his knee brace. This dynasplint weighs a ton and Mattie doesn't like wearing it, but he will wear it for a couple of hours a day, which is an excellent start!
As we head into Wednesday, we will be attending a pre-surgical meeting at 2pm. I hope this meeting puts my mind at peace, but I have a feeling that won't happen until all of this is behind us. If that can ever be possible. We will keep you posted about the meeting and certainly about the scan results on Friday. Friday's bone scan will enable us to see if there are any other tumors growing in Mattie's bones. I never even thought that was a possibility until this was presented to me, because if a bone tumor is found, then we are advised not to proceed with the lung surgery. Which clearly puts a whole other spin on Mattie's prognosis. So to say I feel a bit stressed out is putting it mildly.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I was ready to write, "it sounds like a typical day for Mattie" and then realized just how that sounds. A typical day, in the hospital, being infused, having a playdate in a hospital playroom with other ill children, having what is now almost a standard reaction to the medication and so on...this is so wrong! Mattie should be outside playing, running, enjoying his friends, going to school and so on. It shakes me to the core that I have come to think of this as a typical Mattie day. Peter, you are an amazing Dad and while one day this month is celebrated as Father's Day, you are an award winner every day as far as I am concerned. Vicki you said you were having difficulty getting back on a normal sleep schedule even though you desperately need to rest. How much harder it has to be for Mattie given that he has so much less of a normal sleep history to depend on? I agree that it will take a lot of time and effort to get everyone back on something approaching a normal schedule once the "acute" phase of treatment is completed. Just try to be patient and kind to yourself until you get to that point."
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