My family came for Easter this year– we had a great time and the weather was awesome! The boys were spoiled beyond words. I had such a fun time putting together their Easter Egg “hunt” (throw a bunch of eggs in the lawn) and can’t wait to do this every year. Maybe next year they’ll actually get that they need to search places for eggs! 🙂
The Saturday before Easter Adam had to take Sam to the E.R. During nap (he gets tubed water), his tubing had twisted around a stuffed animal so many times that it pulled out his tube– he never cried or yelled, so we had no idea. Adam went up there and realized his bed was soaked with water, and then saw the button was out! I change it bi-monthly, so we know how to put it back in– however, it closes up within one hour, so if you don’t do it in that window, you need to get to the E.R. (Adam could do it too, but he didn’t have the right tools obviously). So 2 hours and a lot of screaming later (no local anesthesia 😦 ), Sam was back and good as new!
His Blended Diet is going incredibly well. Here’s the basics– during the day, he eats orally (roughly 600 calories total… varies every day) and is tubed water during his nap (about 1 ounce every hour). He doesn’t even drink water willingly, so we need to tube that in for him to stay “regular” and hydrated. Previously, overnight, we would tube him 400 calories of Pediasure on a continuous drip– about 1 ounce an hour. After doing a ton of research, I transitioned him to this blended diet. REAL FOOD. Here are some of my blends:
What’s even more amazing is his body’s ability to handle more volume of the real food vs Pediasure. We gradually started to reduce his continuous overnight feed by giving him a half ounce of the blended diet after every meal– then an ounce, then 1.5oz, etc. Now we are OFF continuous feeds at night!!!
I’m still learning what works and what doesn’t… For example, I used sweet potato and pasta in a few blends. The starches in both made an incredibly thick blend. I then have to thin with a lot of water, which increases the volume– for Sam, not such a good thing! So those days we had to feed him after he went to bed a few times and get up at 5am to make sure he got all his calories. He just gets to sleep through it all, lucky guy 🙂
Since switching, his coloring is so much better and I think he has more energy. His sugars are coming from foods like fruit now, not artificial sources. I wish I had known about this earlier, and I wish more specialists encouraged it. It’s totally possible to do either a bolus (syringe) feeding OR a continuous/pump feeding, depending on a child’s needs. Hopefully now that we’ve had success, more people will give it a try.
The boys have been keeping me busy– Jack’s language skills have improved so much. He can now count to 20 (yep) and recognizes all letters and numbers. And get this– he even slides down slides on his own now! My dream of having adventurous boys is finally coming true 😉
Sam needs a little more improvement in the listening department… But is getting much, much better. We have preschool working with him too, but with only two teachers and a bunch of kids, there’s only so much they can do. I’m afraid he’s the smallest kid in the class, but also the class bully. Remember Sweet Sam who could do nothing wrong a year ago? That kid doesn’t exist much anymore 🙂
Playing with Teacher Sarah (baking soda and vinegar)