Thursday, January 20, 2011

More updates

I feel like I'm always having to do big group updates! But I guess that's exactly what I'm doing, so that's normal. Things have been good with James. Some days am so encouraged and some days I burst into tears at church after he's vomited everywhere. We're a work in progress, what can I say. When I look back on 2010, clearly we have a lot to be thankful for.

Last year at this time James weighed about 19 lbs. Today he weighs over 25 lbs. Last year he only drank a bottle and only when he was sleeping. Now he won't touch a bottle but eats: cheetos, cheese, yogurt, fish sticks, French fries, juice, ketchup, cookies, oatmeal, pasta. Not too shabby. Now, before I get a bunch of disgustingly optimistic phones calls, it takes 30 min to eat 5 cheetos, he can maybe eat 2 fries plus half a fish stick in that same time, he drinks 1 to 2 ounces of juice per day, I have to spoon feed him anything spoonfeedable and have to monitor the whole process each time to make sure he continues to eat, chew, swallow, etc. Still, such huge steps. It truly takes all of my time, if any of my friends wonder why I rarely go anywhere. He has 5 feedings per day, which consist of a tube feed during a small oral meal. Each meal lasts about 30 min, not including setup and cleanup time. So we have breakfast first thing, then we run around for an hour and a half and play and try to get him to digest well, then we have a snack, same run around time (while attempting to do normal housework as well), lunch, nap, wake up and run around for 30 min, snack, run around, bath, dinner, bed. So it becomes difficult to drive any length of time to fit in the feedings properly. Basically when we decide to go anywhere, I sort of consider that day a wash. Especially considering that we live a little far from...well, stuff to do with kids. We have discovered an awesome indoor kids pool about 30 min away and have been having lots of fun when not battling colds!

We had an awesome Thanksgiving with my family and Tom's mom here. It was so nice to see James be able to play with the big boys and keep up, rather than being sick! It helps that my nephews could not be any nicer to him. They are some of the best boys ever!!

We spent 2 weeks in Dallas over Christmas, since we haven't been making our monthly therapy trips anymore. We got to see James' Dallas therapist one night and it was so wonderful to catch up. She continues to be so helpful with tips and suggestions and a friendly ear. We will be heading back to KCRC in March for a few days and hope to jump forward with more progress. I'm still really hoping to have James self feeding by June, but who knows. I don't think we'll still be using the tube then, but I'm not sure how quickly we can develop the skills that are instinctual for most kids, and that they've also been working on since birth. It's a whole other ball o' wax to start learning when you're 2.

That's pretty much my year's recap! I will continue to update as things happen. We are really just staying the course right now, so there's no major, big announcements, which I consider a very good thing!! In the meantime, James is very happy, healthy, and doing/saying new things every day. It's hilarious and we are loving every minute!

1 comment:

  1. Thank you Clare! I am so happy that you are taking forward steps in James situation - all sounds very positive and I am happy for you! I know that it is a lot of work and I salute you as an awesome MOM!
    Stay well and I wish you ALL good things this year!