I'm almost hesitant to post this, but I've been doing bolus feeds for Micah since Friday. You might wonder what that means. Well, until very recently, Micah was receiving his feedings continuously for 19 hours/day (through his feeding tube, which was recently changed to a G-tube from a GJ-tube). A bolus feed is more like a meal. For him, that's about five ounces. And on Friday I tried giving him that volume over a very short period of time (15 minutes).
Today, I gave him FIVE bolus feeds so he does not need an overnight drip feed tonight. This is the first night since May '08 that he hasn't received a feeding overnight, except when he's been sick and we've wanted to give him a break. He also ate orally twice today (about 3 ounces each time).
Oh, and at Feeding Clinic in Milwaukee on Friday, he took an ENTIRE jar of baby food (bananas, in case you're curious). Show off!
Micah has a lot of difficulty with any foods that are more liquid than pudding thickness. We'll keep working on it. But even pureed carrots need some rice cereal added in order to thicken it up.
One of these days we'll be able to get rid of the feeding tube. It could be a year or two. But it's so wonderful to see progress!
14 comments:
This is AWESOME. I know you all have worked so hard. WE have been praying and will keep praying!
Oh Jennie! I can totally relate to the bolus feeding, you know! Isn't it so much easier than continuous? I'm so glad that Micah is tolerating it for you. That's fantastic! Don't feel bad about adding cereal to those carrots because Liliana is the same way. She actually could eat stage 2 baby foods alone but she prefers the consistency of the stage 2 with the cereal. Funny! Best of luck with the whole feeding issue. I know how frustrating it can be.
Hi :)
my blog post was from http://www.nads.org/pages_new/news/ruletheworld.html
-post away!
Three cheers for Micah!!! Well, make that five, for five bolus feeds in a day! Great progress for Micah and great info each day, Jennie. Kris
That's great! Yay Micah!
Yea, Micah! Good job! You're doing so great. We love seeing you grow and grow.
I thought of a question for you, Jennie-feel free to use it but only if you want to. :) I know that the Buddy Walk and other fund raisers support research regarding Down Syndrome. What are some areas of research that may help Micah and other kids with DS someday?
Amy
YAY!!!!!
the end may be in sight....
xo
Way to go Micah! That is awesome!
Way to go Micah!! That's so great.
About your last post about siblings we have told Caleb that Joel has Down syndrome. He is very curious and would often ask why Joel couldn't crawl or walk. We told him that Joel has something called Down syndrome (which of course means nothing to him) and that it just means that it will take Joel longer to do certain things and that he has to work extra hard. That seemed to satisfy him at the moment.
We tend to just talk about it when it comes up. One day I was talking about taking Joel to PREP (his school) and so I explained why Joel goes there and talked about the other kids that go there and the fact that they have Down syndrome just like Joel. So, we try not to make a big deal out of it but talk about it when it fits in with the conversation!
WooHoo!! from someone who knows just how big a deal moving to bolus feeds is! Great news about the whole jar of babyfood too, that's HUGE. Way to go Micah!
woohooo!!
That is fantastic! Keep is up, Micah! What is the thing in his jammie leg? Is that for his tube? Looks like that is how you plug him in, LOL. I had to thicken almost all purees with cereal for a very long time, and still do Jack's yogurt because it is so runny that he ends up wearing most of it.
Jennie -
Hey, what a great refresher to catch up on your family. Thanks for sharing and opening a window into your world.
No plans as yet for swine immunization. Leery of the "everything is OK push".
I am facebookless (or in Greiser: facebookopenic), so I had to track down the blog.
Thinking of y'all and Nashville and your wedding and wanted to make contact.
Love to all the family, Bruce.
Post a Comment