Christmas a go... we think.
Hi Everyone,
Well yesterday we did not get to the pool or to see the fish tank at the Mandarin. She didn't even want to play outside. She was very tired and actually had a 3 hour nap in the middle of the day which she has not done since being out of the hospital. Ian and I had a little cry over this because her palliative care team explained to us that this was a step towards the inevitable. When she woke up from her nap she wanted to play "Happy Meal" which is when she pretends she is working at McDonald's (when in her plastic play house on the front porch) and everyone must pretend to drive up to her window and order a happy meal. She insists that you pay before she gives you your meal (real money) but often when she gives you your change it is more that you gave her in the first place. She then passes you pretend food, says "thank-you" and then closes the shutters of the window. Within seconds she then instructs that its someone else's turn. This continues until Mama, Dada, Papa and Nana have all had a turn. We've explained to her that Griffin and Willie do not like happy meals so she no longer tries to get them to participate. She was then up for going to the "window" for her own happy meal. We all loaded into the van (except for Papa who Grace insists drive his "own car papa") and off we went to Mc D's. About 1/2 way there (3 min drive) she started to fuss to come home. She really finds comfort being at home these days. I imagine there are so many odd things happening with her body that it make her anxious if she is not in familiar surroundings. Once she saw Mc D's she agreed to go through the drive thru for a happy meal but did not eat any of it she just really wanted the Hummer (toy of the week). That lead to a quiet night with Steph and Paul dropping off Xmas gifts and decor for our possible Xmas on Sat as well as giving us big hugs which felt good. We are still hoping for Xmas to be Sat but we'll have to see. Tomorrow we have a professional photographer coming to the park with us to take candid photos and hopefully a family photo. Friday Dora is coming for lunch (thanks Gerry). Again we'll just have to see moment by moment how Grace does and responses to things. In this moment we are feeling strong and starting to get Grace used to the idea of Santa. We've already watched Frosty the Snowman twice today and she has told me that she is a good girl and would deserve presents... She quickly added that Mo, Nicky, Jules and Baby Zen are good too. Ian just came in, she just fell asleep for a nap... again my heart fills with sadness.
Love,
Les
P.S. We are going to try to get her to the hospital just to check her platelets since this is the only thing that they will really respond to if there is a problem.
Well yesterday we did not get to the pool or to see the fish tank at the Mandarin. She didn't even want to play outside. She was very tired and actually had a 3 hour nap in the middle of the day which she has not done since being out of the hospital. Ian and I had a little cry over this because her palliative care team explained to us that this was a step towards the inevitable. When she woke up from her nap she wanted to play "Happy Meal" which is when she pretends she is working at McDonald's (when in her plastic play house on the front porch) and everyone must pretend to drive up to her window and order a happy meal. She insists that you pay before she gives you your meal (real money) but often when she gives you your change it is more that you gave her in the first place. She then passes you pretend food, says "thank-you" and then closes the shutters of the window. Within seconds she then instructs that its someone else's turn. This continues until Mama, Dada, Papa and Nana have all had a turn. We've explained to her that Griffin and Willie do not like happy meals so she no longer tries to get them to participate. She was then up for going to the "window" for her own happy meal. We all loaded into the van (except for Papa who Grace insists drive his "own car papa") and off we went to Mc D's. About 1/2 way there (3 min drive) she started to fuss to come home. She really finds comfort being at home these days. I imagine there are so many odd things happening with her body that it make her anxious if she is not in familiar surroundings. Once she saw Mc D's she agreed to go through the drive thru for a happy meal but did not eat any of it she just really wanted the Hummer (toy of the week). That lead to a quiet night with Steph and Paul dropping off Xmas gifts and decor for our possible Xmas on Sat as well as giving us big hugs which felt good. We are still hoping for Xmas to be Sat but we'll have to see. Tomorrow we have a professional photographer coming to the park with us to take candid photos and hopefully a family photo. Friday Dora is coming for lunch (thanks Gerry). Again we'll just have to see moment by moment how Grace does and responses to things. In this moment we are feeling strong and starting to get Grace used to the idea of Santa. We've already watched Frosty the Snowman twice today and she has told me that she is a good girl and would deserve presents... She quickly added that Mo, Nicky, Jules and Baby Zen are good too. Ian just came in, she just fell asleep for a nap... again my heart fills with sadness.
Love,
Les
P.S. We are going to try to get her to the hospital just to check her platelets since this is the only thing that they will really respond to if there is a problem.
posted by Lesley at 1:09 p.m.
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