Just a quick update about nothing. Eve is doing very well. She is healthy and happy. She has adjusted so well to her new bed. She definitely keeps us laughing. We were watching video that was taken a year ago in her school. It is amazing how much older she looks now. I suspect that is in part because her hair has changed - she is growing out her bangs. She is so beautiful.
Seamus is also doing well. His next doctor visit is next week, so I'll report his height and weight then. He doesn't seem too wild about his bottles and often doesn't finish them. I have no idea how much fluid he takes when breastfeeding. When it comes to food, however, he's a little eating machine! It's unbelievable how much that boy fits in his stomach. He quickly polishes off 3.5 oz of baby food (a size 2 container) and about a 1/4 to a 1/3 cup of cereal twice a day. We've added a third fruit or veggie around lunch time, as well. Jim let Seamus hold Eve's sippy cup the other day. OMG, he grabbed right onto it and raised it to his mouth!! So, I'm going to buy him his own sippy cup (with handles) and give him small amounts of water to experiment with. Oh, and he has slept through the night for the past two nights. I hope this trend continues!
His schedule right now is:
7am awake and nurses.
8:30 fruit and cereal.
10am takes a nap (not terribly long).
11:30 nurses
12pm fruit or veggie
1pm nap
3pm nurses
4:30 veggie and cereal
6pm bath, book, nurses
6:45 asleep for the night.
He's been waking up around 3 or 4am to nurse, but I'm hoping that will get dropped from the schedule soon.
He's a happy kid and really easy going. We're very lucky.
The purpose of this blog is to keep everyone updated on our family and the management of Eve's mitochondrial disease.
Wednesday, January 25, 2012
Wednesday, January 11, 2012
Monday, January 2, 2012
Roll
When Jim got Seamus out of bed this morning, he was on his stomach! This is so exciting for me because Eve NEVER did that. Seamus can already do things that Eve cannot (which is bittersweet), but they have been skills she's lost due to regressions. This is the first skill she never had. It's encouraging. I'm so scared for him because we thought Eve was typical (with some slower development) for about a year after she was born. But every milestone he hits is encouraging.
Sunday, January 1, 2012
Turned a corner
Eve turned a corner overnight. Her fever broke and she got more sleep than I expected. She's still very congested, but her cough sounds better.
Saturday, December 31, 2011
Eve is sick
About five days ago, Eve began coming down with a cold. She developed a cough and we took her to the doctor yesterday to make sure there was nothing going on with her lungs. She sounded clear. So we've been giving her advil, decongestant, and honey for the coughs. Today has been bad. She's miserable. Her nose is running like faucet with thick snot and she's had a horrible hacking cough all day. Her appetite is totally off. She's been drinking some, but not much. We've given extra fluids through her gtube. She choked a bit while coughing after dinner and couldn't catch her breath. Scared herself and us. She has a fever of about 102, so we're going to call the doctor. She's been so healthy lately, I feel out of practice with this. I think it's going to be a rough night.
Monday, December 26, 2011
Eve's new bed
Eve got a new bed last week. We are so very excited. It's a Sleep Safe bed and it's wonderful. As you can see from the pictures, the bed is higher than a normal bed with is much better for our backs when we transfer her in and out. There are rails on both sides that run the length of the bed (unlike her previous bed that had toddler rails that were about as long as she is). The mattress is snug against the rails, so she cannot become entrapped. Changing the sheets is so much easier as well!
The first night Eve was in the new bed, she was a little freaked out and took a while to get to sleep. However, since then she has had no problem!
The first night Eve was in the new bed, she was a little freaked out and took a while to get to sleep. However, since then she has had no problem!
Christmas 2011
It's been a quiet Christmas this year. We are not traveling for once, which is a blessing. It's just so very hard to travel with Eve. She is at the point where her equipment needs are overwhelming. So, the grandparents have graciously agreed to visit us instead. Grammie and PaPa are coming this week and Oma and Pop are coming next week. We are very excited.
Christmas morning was very nice. Eve didn't seem to really care that much about Santa. We are guessing that the real excitement will happen as Seamus grows older. Eve did enjoy unwrapping her presents, but not as much as we thought. She was a little checked out all day. Hopefully it will be better when the grandparents are here to inject a little more excitement.
Christmas morning was very nice. Eve didn't seem to really care that much about Santa. We are guessing that the real excitement will happen as Seamus grows older. Eve did enjoy unwrapping her presents, but not as much as we thought. She was a little checked out all day. Hopefully it will be better when the grandparents are here to inject a little more excitement.
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