The purpose of this blog is to keep everyone updated on our family and the management of Eve's mitochondrial disease.
Tuesday, November 4, 2014
Saturday, November 1, 2014
Halloween
My love |
This was a fun Halloween. Seamus got really into it. Orange was the color of the month and he happily pointed out all of the orange he saw - in Spanish! ("Naranja!!)
Can you guess which pumpkin Seamus designed?
Did you know that dogs make the best seats?
So do wheelchair footplates.
Sibs |
He told everyone he was a nice Bigfoot, not a mean one.
Fortunately, the weather was much better than last year, so we headed out to Trick or Treat. We bundled Eve up, but she was dressed as Peppa Pig. She was so very excited, she did NOT stop squealing as we got ready to leave. I was worried she would get hoarse.
We drove to a neighborhood that is more flat than ours (and where the kids have friends). Just as we were getting out of the van, we ran into one family I wanted to be SURE to see. Lots of laughter and happiness ensued. Here is a photo taken of us (Thanks, Colleen!!):
After we saw the Martins, we immediately ran into some of Seamus' friends from school. We hooked up with them and hit up the houses for candy. Seamus and his friend from school held hands nearly the whole time. My heart melted into an ooey gooey puddle. He kept calling for her after each house.
So that was the great part. Unfortunately, it wasn't a successful night for Eve. She got bored and very cold. Upon later reflection, we wonder if she was disappointed that she didn't go up to the houses for candy. The houses all have steps and she can't eat candy, so we had decided to have her hang back, but enjoy the activity and seeing her friends. We cut the Trick or Treating a little short because we noticed she was shivering. By the time we got home, she was in a full blown pain episode. It was a bad one. She made that keening sound that I haven't heard in a while. I gave her morphine and even the booster dose 15 minutes later. She didn't want us to leave her. We made sure she was tucked in bed as comfortably as possible and left the room to allow her to rest (we thought our presence was keeping her up). I checked on her about 20 minutes later (after being sure all was quiet on the monitor) and she was asleep. We think that being cold can precipitate these episodes (but that that's not the only cause). This morning, she seems a little out of it. She keeps dozing off. It must have taken a lot out of her. Next year, she will be handing out candy with me at our house. I told her that we will both dress up and get to see the kids from our neighborhood. I imagine that Jim and Seamus will hit up the houses in our neighborhood (the hill and lack of sidewalks won't be as big of a big deal if you're not pushing a wheelchair). I had a bit of a pity party last night after the kids were settled. It's tough to watch your kid struggle. But it was great to see how happy Seamus was. Bittersweet.
Grandparents' Day
Last Friday was Grandparent's day at Seamus' school. Both sets made the trip to celebrate. They spent the morning at school and participated in crafts and activities. Seamus was so very excited. It was so wonderful to have everyone together (it's been awhile) and the house was filled with laughter and love. Here are some photos from the weekend:
Grammie liked the kids' signs for the first day of school so much that I made one for her, too.
Seamus got in on the photography action. The next few shots are his. They are kind of amazing because he wasn't even looking through the viewfinder.
Grammie liked the kids' signs for the first day of school so much that I made one for her, too.
Seamus got in on the photography action. The next few shots are his. They are kind of amazing because he wasn't even looking through the viewfinder.
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