As we were trying to get Mattie to sleep on monday night, he started complaining of being itchy. He was so agitated by this he literally looked like he wanted to scratch his right arm off. We kept stopping him from scratching, but at midnight, we were at our wits end, and decided to give him a very small dosage of pain medication (NOTE: I checked in with Bob today, and he was fine with this decision!). That seemed to calm him down and the itching stopped. I think what makes Mattie's cancer situation so challenging (okay one of many things!) is that we have lost our night time routine. Mattie is up at all hours, and he has been sleeping in our room since chemo began. In addition, he no longer sleeps peacefully. He wakes up periodically throughout the night screaming, and once we calm him down, he complains of having nightmares. So understandable based on what he is dealing with, but it is SO overwhelming as a parent. Peter and I are already taxed and stressed to the limit, and then when there is no down time at night, that only compounds the pressure. Any parent will know exactly what I mean, at the end of the day, you savor a minute of quiet time to yourself. To do what you need to catch up on, or to simply take a moment to yourself. We have lost these moments in our life, and I guess we used to take them for granted before all this happened. Now we dream of a quiet night, when Mattie goes to sleep at 8pm, and we have a chance to talk with each other. For an outsider, if could appear that we are not providing Mattie with the discipline and structure he needs to go to sleep at a decent hour, but I can assure you this is far from the reality. Especially since I consider myself the queen of the Ferber sleeping method (Peter and I basically learned this method to teach Mattie to sleep through the night when he was 16 months old and there was no other way to get him to sleep effectively). So needless to say, we had another restless night of sleep on monday.
Mattie was excited today when he woke up because Emily W. (his former babysitter) was coming to spend the afternoon with him. Mattie started off the day hungry, hungry for homemade pancakes. He ate well, and then we played all sorts of games and did puzzles together. I am noticing that Mattie is trying to use his right hand more now, which is fabulous, and the swelling continues to go down in his hand. Mattie was motivated to get dressed today (thanks Alison for the great shirt!) and was eagerly awaiting Emily. Emily spent the afternoon playing with legos, building a haunted mansion, and working on a puzzle together. I wish Emily still lived in DC, because I could tell they both enjoyed each other's company today and Mattie is hoping to play with Emily again before she leaves for NY next week. Emily is a special person who deeply cares about Mattie. See some of the fun pictures of the activites they did together today.
Mattie building a lego firetruck!
Mattie transferring his "trash" from his garbage truck into his beautiful lego hotel. Poor hotel!
Mattie next to the haunted mansion he decorated with Emily today! Thanks Grandma for the great hat. Mattie loves wearing it outside and apparently inside too.
Mattie with his new puppy socks (thanks Ann!) and Emily!While Emily was playing with Mattie, my parents and I went out to lunch. Thanks for a nice lunch and a time to vent and chat, without being censored with Mattie present. We then stopped off at Borders and had a chance to walk around the store, a foreign concept for me, since I rarely have the time to meander through a store these days. Needless to say, Mattie received some wonderful halloween things today from Grammie and Pop Pop, one of which was a halloween video that Mattie had a chance to watch part of tonight.
Later in the afternoon, Mattie felt the need to assemble kites and head outside to catch the breezes. Mattie and I both went out with a kite, big mistake. It was so windy, that our kites collided, the strings wrapped around one another, and we came back inside to try to find a way to get them untangled. We were both persistent and worked out the knots, and then Mattie went right back out to fly his kite. Below you will see the sheer joy he was having controlling his kite. No one would guess that he had major surgery a week ago.
Mattie is one with his kite!While we were outside, Peter came home and Mattie gave him a big greeting, and we all went inside, and had a fabulous food feast thanks to the Putnam family. Grace you thoroughly spoiled us. We all ate as a family tonight, and had a good time chatting and eating. Mattie LOVED the watermelon and the chicken! We also want to thank you for the incredible gifts. One is more amazing than the other, and our family favorite was the Candy Corn Comedian (a stuffed animal, that tells hysterical jokes)! Thank you also for the great books, they are coming with us to the hospital next week! Thank you Grace for your generosity!
Mattie had a big package day! The post office must just love Mattie. Thank you Lorraine, our neighbor's Gale and Joe, Jane and Nancy, Brian Boru, and Sara Catherine and Garrett for your lovely cards and gifts! They made Mattie's day today and it was so thoughtful of all of you to think of him! We also want to thank Ernesto's (a colleague of Peter's in Peru) daughter, Mariana, for sending Mattie a wonderful Peruvian wool hat for the winter. It is a very special gift. Thank you Srinivas and Artie for the Peru t-shirt. It was nice of you to think of Mattie on your trip.
On the electronic front, we want to thank Brian Boru (our feline friend), Susan, Grammie (for the animal pictures), Lorraine, and Karen for your wonderful e-cards. Thank you for always thinking of Mattie. I was a little intimidated to come home this week post surgery, but Mattie is holding his own (despite the sleepless nights and nightmares). But a part of me is worried about what will happen after the next surgery. If all the other tumors are removed then, how on earth will Mattie function? I realize this is hopefully a short term issue, but as a mom you have to wonder about these things. Our home has already been transformed with Mattie's illness, and the reality is setting in about the more profound change that is imminent.
1 comment:
Wow, Mattie is doing really well! After such a major surgery going home after just a few days is really good! I hope you all enjoy his weekend.
My mother came to live with us during the time Emma was under active treatment. I would take the before 12:00 shift and she would take the after 12:00 night shift. My husband would take over for my Mom on weekends but he had to sleep since he had to go to work. Emma just did not sleep well. Her days and nights were completely off. There was not way to manage this as the nauseau drugs made her sleepy at funny times during the day and then she would be awake most of the night. This is totally typical and not any reflection on anybody's parenting skills!
Lauren
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