This past weekend was pretty rough and I am happy to say that the kids made it through relatively unscathed. There were some moments of agony on their part with a slight stomach bug that was going around. All three kids were under the weather. While it isn't a good idea for any of them to fast, it is incredibly important for Ariella and Michael to eat and they were refusing. That is when it gets really frustrating with this disease. You want to acquiesce to their desires, especially because who wants to eat when they are nauseous? No one. But they have to have food in their system. They need the calories to get better, or to keep from getting worse. And you know they are sick when they start requesting Zofran. That has become the magic pill in this house. Once they have some, they can feel better and start to eat. I have to say I am forever thankful for whomever came up with that medication!
Since Sunday, the kids have been much better, which is definitely a huge relief! I am sure they are going to want to go swimming again on Thursday, like they have for the last two weeks. Here's hoping I am feeling well this week; last Thursday I was having a rough day of my own and wasn't able to bring them. Good thing Daddy only lives a mile away! He came and got the little goobers and took them.
Hi, my name is Katie and my 2 month old son has CPT 2. I found your blog today and I'm hoping to connect with some other parents with CPT 2 kids. As I'm sure you've found as well, there is so little hopeful information out there, especially regarding newborns. I hope your kids are well and I look forward to following your blog. It's been a lonely journey so far but I'm hoping to hear more stories of kids who are living with this successfully. If you have any suggestions for resources you've found helpful, I'd love to know about them. Thanks!
ReplyDeleteHi Katie! If you are on Facebook, I've got a page on there as well. It has the same name as the blog, well, Raising Rare and Beautiful Children with CPT 2 Deficiency. I tend to be on that more often if you'd like to chat and ask questions.
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