A Little Something Extra

Friday, August 7, 2009

Week of accomplishments

(I just had to start with that photo because it's their classic expressions: Matthew wondering how he got stuck in such an insane place and Micah doing anything to make me laugh)

I've already posted about Micah CRAWLING. But I failed to mention that Micah started opening his mouth when presented with a spoon this week. This is great news. Maybe he finally "got it." Or maybe he is just mimicking his brother, Matthew. Whatever the reason, Micah actually *desired* food in his mouth. Mind you, most of it came right back out because he didn't know what to do with it. But he swallowed a little bit.

And just in time for his swallow study today. "What's that?" you might ask. A speech pathologist puts some barium (dye) into his food and I feed him while a radiologist has him under video fluoroscopy from the side. The speech therapist can follow the food all the way down to the swallow. The great news from today is that his swallow mechanism works. But what doesn't work is that his tongue basically functions like a newborn in that it doesn't know how to draw food to the back of his throat. So, now we work on the tongue.

Ah, the tongue. My nemesis. I spend half of my day trying to get Micah to put his tongue in his mouth. I know it's better for his speech, etc. But how much of my efforts are due to vanity and not for his benefit? Because, let's face it, he's a much more attractive boy when he doesn't have his fat tongue sticking out. So, Jennie, let's work on Philippians 2:3 - "Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves."

Micah and I were also excited today to share with the feeding team in Milwaukee that Micah is now taking ALL of his nutrition through his G-port (stomach). The only thing still going into his J-port (intestines) are his medications. We will introduce one med at a time into his G-port so that hopefully by the next time he needs a new tube, we can take out the J-port.

For those of you without the mommy medical degree (seriously, shouldn't there be such a degree for those of us who have spent ridiculous amounts of time in medical facilities with our kids?), most feeding tubes are G-tubes (be it one that goes from the outside of the belly into the stomach or an NG tube that goes down through the nose). Micah has a GJ-tube, which means that there are two tubes in one (from the outside of the belly). We can feed him either into his stomach (G-tube) or into his intestines (J-tube). When Micah came home from his OHS in May 2008, he had his first GJ-tube. At that time, he was being fed strictly into his J-tube because his duodenum (first part of the small bowel) wasn't working. We were given clearance a year ago to begin feeding him into his G-tube for a short period of time each day. So it's taken his little GI tract a year to get to strictly G-tube feeds.

There are a few reasons why it's important to ditch the J-tube, not the least of which is that every time he needs a new tube, whether it's for standard replacement, malfunction, or being pulled out, he has to go to interventional radiology and spend time under fluoroscopy to have the tube repositioned into his intestines. With a G-tube, if his button comes out, we just pop a new one in, inflate the balloon that keeps it in, and move on with our day.

So, big-time YAY for getting closer to getting rid of the J-tube. We're also making progress toward bolus feedings (more like meals rather than the close-to-continuous feedings he's on now). That progress often gets halted by illness (increasing the rate of flow into his stomach often causes him to vomit anyway, so I never try this when he's already feeling crummy). This kid just has a super-sensitive GI tract. But one of these days, we'll get him to daytime bolus feeds, drop the overnight drip feeds, and then he'll have no medical excuse for not filling his belly with food consumed through his mouth (other than his super weak tongue, but hopefully we'll be fixing that during this changeover process.

Now, for some photos.

(Mr. Flexibility with Daddy and Matthew)

Micah with his buddy, Brandon (last month... okay, so I'm a bit behind on photos). It's been way too long since these little guys played together. Kim and I "met" before the boys were born and their stays at Children's overlapped (both had duodenal atresia surgery with the same surgeon... and Kim and I were patients of the same perinatologist and same OB/GYN practice, and our kids see the same pediatrician).

The Gang at the park: Ruby, Max, Logan, Micah, and Aaron


Jonathan's Mom said...

Thanks for all the encouraging news! Go Micah, and good job, Mommy!

Kelly said...

Such GREAT news! Big hugs to all!

MommySecrets said...

What a big week, with encouraging news and fun memories!

Thanks for the mini lesson towards our mommy degrees - I appreciate that you take the time to educate us, so we can better know how to support you and pray for you!

Andrea @ Unfailingly Loved said...

Great News, Jennie! Loved the part about "mommy degrees" -- I think it should be at least a PhD for Physically (and emotionally, for that matter) Diligent to do what is right and best for our kids.

Love you, friend.

ATLKrafts said...

girl, if there were mommy medical degrees, you would be an MD, PhD, JD, + anything else you can have a doctorate in... andy just landed in WI tonight so we need to figure out a rendezvous...

Rena said...

Yay, Micah!!!

Tracy said...

Hi! I came across your blog by way of Sherry from BC (Nate's mom). Your family is adorable! I wanted to get in touch with you because I live in the Twin Cities, and I'd love to meet up sometime! I have three little ones as well... Lydia (5), Will, who has DS (3), and Evelyn (5 months). Email me if you'd like to chat... I can "hook you up" with the good docs, therapists, parent groups, etc! :)

Take Care,

sara p said...

wow, what a great week for you and your family:) that warms my heart to hear Micah on the way to being able to enjoy eating food.... thats one of the little things we take for granted.
im hoping to make it to mom's night out, max has a pt appt. that night... so i might be a little late, i look forward to seeing you:)

The Josephs Family said...

Hi Jennie!
I've been a follower of your blog for a while now and I love following your all of your son's stories. I think little Micah is absolutely precious. I work in the optical industry and came across an ad in one of our magazines today that I wanted to share with you. I know that Micah wears glasses and they look like they fit well, but I wanted to let you know that there is a new line of glasses specifically made to fit the face of a child with Down's. Even if Micah doesn't need new glasses maybe you know someone else who does. There is a website with more information and doctor locations at www.specs4us.com Hope the entire family is doing well and you survived the move!
Have a great day,

Kris said...

Go Micah! I hope to see him crawl in person some day.....or walk :). Hopefully we'll run into you before then. Kris