I hate to even follow up with last night's post at all. What a high. Two giant steps forward.
Today was a step back. For everything. Simon was back to throwing food and stalling. I was feeling more tired than I have in days and then got sick. Yup, here I am in what's supposed to be a clean and sterile environment (full of sick people and their many visitors) and I catch some sort of stomach bug. I've had low grade nausea all day and the idea of eating or being close to food makes it worse.
Awesome for having to do 6 meals a day with very few breaks in between. Awesome to have to model eating for the child. Awesome for trying to keep up with a five year old and freaking out that he might get sick as well.
Just kind of a shitty day only compounded by the delight of yesterday's end. Sometimes I hate contrast.
The team was super supportive during our Friday afternoon conference. I can almost believe that I'm doing well. Nausea is a great detergent to feeling good about anything. Still, I love simon so strong. When he asks if he can "save me" after a rough meal I want to hug him too hard and give a resounding yes!
When he puts on his superhero cape after a shower and is half naked alternating between being a baker (cape around front) and Captain America/Spider-Man/The Hulk (cape in back) I think he is simply the most delightful being ever.
When I feel like barfing or wanting to just lie my head down in the plate of spaghetti from fatigue and he's pushing the table into my knees, well, then I just want the roller coaster to stop, get my money back, and pretend like a G-tube isn't all that bad and go home.
On a more mundane note, Simon has finally learned to puff out his cheeks like a puffer fish and slide down something on his stomach. Seriously, if we leave now, that doesn't sound like a total waste right? I can think of a lot of people that would pay several hundred thousands of dollars and countless man -hours for skills like that.
Thank you dear friends and family for the packages that keep coming. The cupcakes were a huge hit with the feeding team, the nurses on the floor, and the random patients and family members that passed by during Turtle Talk in the afternoon.
Something else kinda remarkable...Simon chose to stay in the room tonight and miss the 5:30 Turtle Talk. First time since Monday December 2nd. I don't know what to make of it except that maybe he and I do so much of it anyway, he wasn't feeling the need.
Which also lets me know that I need to work Extra hard this week to stop talking like a Southern California surfing Turtle.
Laura out.
Today was a step back. For everything. Simon was back to throwing food and stalling. I was feeling more tired than I have in days and then got sick. Yup, here I am in what's supposed to be a clean and sterile environment (full of sick people and their many visitors) and I catch some sort of stomach bug. I've had low grade nausea all day and the idea of eating or being close to food makes it worse.
Awesome for having to do 6 meals a day with very few breaks in between. Awesome to have to model eating for the child. Awesome for trying to keep up with a five year old and freaking out that he might get sick as well.
Just kind of a shitty day only compounded by the delight of yesterday's end. Sometimes I hate contrast.
The team was super supportive during our Friday afternoon conference. I can almost believe that I'm doing well. Nausea is a great detergent to feeling good about anything. Still, I love simon so strong. When he asks if he can "save me" after a rough meal I want to hug him too hard and give a resounding yes!
When he puts on his superhero cape after a shower and is half naked alternating between being a baker (cape around front) and Captain America/Spider-Man/The Hulk (cape in back) I think he is simply the most delightful being ever.
When I feel like barfing or wanting to just lie my head down in the plate of spaghetti from fatigue and he's pushing the table into my knees, well, then I just want the roller coaster to stop, get my money back, and pretend like a G-tube isn't all that bad and go home.
On a more mundane note, Simon has finally learned to puff out his cheeks like a puffer fish and slide down something on his stomach. Seriously, if we leave now, that doesn't sound like a total waste right? I can think of a lot of people that would pay several hundred thousands of dollars and countless man -hours for skills like that.
Thank you dear friends and family for the packages that keep coming. The cupcakes were a huge hit with the feeding team, the nurses on the floor, and the random patients and family members that passed by during Turtle Talk in the afternoon.
Something else kinda remarkable...Simon chose to stay in the room tonight and miss the 5:30 Turtle Talk. First time since Monday December 2nd. I don't know what to make of it except that maybe he and I do so much of it anyway, he wasn't feeling the need.
Which also lets me know that I need to work Extra hard this week to stop talking like a Southern California surfing Turtle.
Laura out.
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