The purpose of this blog is to keep everyone updated on our family and the management of Eve's mitochondrial disease.
Thursday, May 22, 2014
Micker bowl
Monday, May 19, 2014
Eve has been having a very hard time keeping her head up. She hangs her head down so far, it must be painful. We're trying to figure out a solution. Here is our temporary fix:
It's a head rest that is used as a support from underneath. It's only temporary, because she must be watched at all times when using it. She has the ability to press her nose and mouth into the pad and she doesn't necessarily have the strength to lift her head to maintain her airway. We're going to be trying out another system. Stay tuned.
Seamus got a new haircut. Handsome little guy.
On Mother's Day, I did some gardening with the kids. They were both very helpful.
Last night, Seamus helped Jim cut the grass for the first time. His face was very serious the whole time, but he enjoyed himself very much. I could see him talking to Jim the whole time (not that Jim heard anything he said).
It's a head rest that is used as a support from underneath. It's only temporary, because she must be watched at all times when using it. She has the ability to press her nose and mouth into the pad and she doesn't necessarily have the strength to lift her head to maintain her airway. We're going to be trying out another system. Stay tuned.
Seamus got a new haircut. Handsome little guy.
On Mother's Day, I did some gardening with the kids. They were both very helpful.
watering blueberries |
planting basil |
Last night, Seamus helped Jim cut the grass for the first time. His face was very serious the whole time, but he enjoyed himself very much. I could see him talking to Jim the whole time (not that Jim heard anything he said).
Saturday, May 3, 2014
Seamus
Seamus has been growing in leaps and bounds. He amazes us every day. Sometimes I can't believe he'll be three this summer. Where has the time gone? His language is incredible. He has had a total vocabulary explosion. It's still hard to understand him sometimes, but for the most part he is pretty clear. He has a wonderful sense of humor and is very polite (when he isn't being a obstinate toddler). He loves cuddles ("Huggies, Mommy!!").
On Thursday, Seamus didn't have daycare so Jim stayed home from work and spent the day with him. I'm so glad the two of them had this special time together and were really able to enjoy themselves (as opposed to having to stay home with a sick kid). They fixed the storm door, went to the library, and then capped it off with lunch at the local Chinese restaurant. This is the second time they went there, and I must say I am totally jealous. Apparently, Seamus was super excited and very funny. Jim said he kept pointing to the fish in the tank ("fishy!!!) and when the waiter poured water with a lemon in it, Seamus shouted, "Fishy in my water!!" Jim reassured him it was not a fish in his water.
I bought Seamus a beginner set of chopsticks, and Jim brought them along.
Seamus has also been very interested in jigsaw puzzles for the last several months. He is impressively good at them. Yesterday, Eve's PCA brought a big dinosaur puzzle that her son outgrew. It's perfect. Seamus put it together with some help from Jim. This morning? He barely needed help and it was only his second time. Can you be a jigsaw savant?
He is such a wonderful boy, and I am so lucky to be his mom.
On Thursday, Seamus didn't have daycare so Jim stayed home from work and spent the day with him. I'm so glad the two of them had this special time together and were really able to enjoy themselves (as opposed to having to stay home with a sick kid). They fixed the storm door, went to the library, and then capped it off with lunch at the local Chinese restaurant. This is the second time they went there, and I must say I am totally jealous. Apparently, Seamus was super excited and very funny. Jim said he kept pointing to the fish in the tank ("fishy!!!) and when the waiter poured water with a lemon in it, Seamus shouted, "Fishy in my water!!" Jim reassured him it was not a fish in his water.
Nom Nom Nom |
Seamus has also been very interested in jigsaw puzzles for the last several months. He is impressively good at them. Yesterday, Eve's PCA brought a big dinosaur puzzle that her son outgrew. It's perfect. Seamus put it together with some help from Jim. This morning? He barely needed help and it was only his second time. Can you be a jigsaw savant?
He is such a wonderful boy, and I am so lucky to be his mom.
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