A Little Something Extra

Friday, August 28, 2009

Micah did it!

Micah did it, and got the t-shirt. :-)

Thanks to Jennifer at Three's a Charm, Micah has a new t-shirt to show off. If you feel led, please buy an "I Did It" shirt for your little one. Jennifer is using the proceeds to buy books for parents who have received a Down syndrome diagnosis for their baby. Inside the front cover, she's putting a note saying who gave them the book and the blog address of that person. So hopefully one of these days I'll hear from someone who came to visit our blog and read about Micah! If you don't have a blog, or if you feel led, when you buy the shirt, ask Jennifer to put a blog address in the front cover anyway, whether it's our blog or another blog of a child with a little something extra.

And doesn't he look studly in the black shirt and jeans?

You might ask, "What did he do?" Well, I've mentioned some of it. But I thought it was a good time to share what Micah is doing these days.

1. Crawling... on all fours consistently (unless he's really tired and resorts to the army crawl, but that's happening less often these days).

2. Signing - Micah can do the following signs: more, ball, car, bus, eat and signing time (to request his video every morning). Also, in the photo above where it looks like he's signing "more," he's really doing the Itsy Bitsy Spider.

3. Verbal - Micah only says Dada consistently (which makes Mark's heart melt). He also yells loudly when he wants Nathan's attention. He's starting to click his tongue, which is great for building up strength.

4. Eating - Micah is now opening his mouth for baby food at the table. This is huge, because it means he doesn't have a total oral aversion. I'm sure part of it is due to him mimicking his baby brother (you know... the little piggy). Micah's tongue functions like a newborn, though, in that it doesn't draw food to the back, so most of the food is pushed out by his tongue. But we're working on tongue strength with him.

5. G-tube feeds - Micah now receives EVERYTHING through his G-tube so today we went to the pediatrician's office and had his GJ-tube button removed and replaced with a G-tube button. Praise God! No more trips to interventional radiology in Milwaukee every time he has a tube issue. It's taken a long time to get here. He's still on mostly continuous feeds (compared to bolus feeds, which is more like meals), so we still have to take the pump everywhere. But moving to all G-tube feeds is a major step and we definitely don't take it for granted. One of these days I'll post some photos of the difference between the tubes.
(For those of you astute blog readers, yes, he did get new glasses. I was planning to buy him some Specs4Us anyway, and by leaving his other glasses on top of the car, I expedited the purchase).
OT - I have to add these photos of Matthew because I'll forget to post them later. I call this one:
"I'm so hungry, I could eat a train!"

Wednesday, August 26, 2009


Okay, who is going to organize the bloggers for next year's National Down Syndrome Congress Convention? Why do I care? Because we're going! Yay! My mom is coming along too. It's a win-win, really. She'll get to experience Disney with her grandsons the first time they go. And we'll get some much-needed help with *hopefully* two toddlers and a crazy 4-yr-old.

So... who else is going? We'll be there from 7/14-19. If you're thinking of going, click here to register. Hope to see you there!

Wednesday, August 19, 2009

Wordless Wednesday

I think this is Micah's vision of heaven
Matthew with Granddad

A farewell dinner out with Melanie, Debbie, Michelle, me, Christine, and Danielle. We all have little ones with an extra chromosome. I'm going to miss these women and the support they have provided for us. And I'll very much miss their sweet little ones.

(see below for 2 other posts done today)

Cardiology update

Micah had his last visit with his cardiologist, Dr. S, today. Micah was considered a patient of hers before he was even born. She met Micah in the NICU and has worked with him ever since then. We will definitely miss Dr. S and her whole staff.

I must say that today's echo was MUCH more difficult than his previous ones as he's a bit more mobile and opinionated than before. His valve leakage has not improved (still considered to be "moderate"), so she's increasing his medication and did tell me that he will likely be on heart meds for the rest of his life. I guess that's a small price to pay for a heart that works, huh?

Micah had no interest in smiling for a photo op with Dr. S. By this time he had been awake for over 5 hours. And it's not an especially flattering photo of Dr. S either. But it is what it is.

WI State Fair and family fun

My dad was visiting over a week ago and I'm finally posting photos. We made a crazy decision to take m3s (my 3 sons) to meet up with my dad, bro, and sis-in-law at the Wisconsin State Fair. It was crazy mostly because of the weather: rainy in the morning, hot and sticky in the afternoon. But I got my cream puff (and successfully avoided the chocolate-covered bacon on a stick), so I was happy.

Micah did very well considering how hot it was.
A killer nap in the stroller
No jokes about me being the bull, please
My lovely rooster who crows every morning between 4-5am.
This was flying over the Fair and it says, "Y'all look hungry." Seriously... if you're at the Wisconsin State Fair and you actually look HUNGRY, it's because you haven't entered the gates yet.

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

Thursday, August 6, 2009


He did it! (And yes, I'm ordering an "I Did It" t-shirt from Jennifer at Three's a Charm... head to her blog to see that she's making these cute t-shirts to raise money for copies of the book, "Gifts 2" to give to new families with a little one with a little something extra).

Yes, Micah has transitioned almost completely to full-blown crawling (compared to his army crawling). He did about four "steps" on Monday and yesterday he went from the love seat to the fireplace and then pulled up to kneeling to get a toy off the hearth. Yay, Micah!!!

What's most impressive is that this accomplishment is occurring during a time that he is sick. Yes, this child has a super hard time fighting any sort of illness. He's on day 16 of diarrhea now. It's making for very difficult nights for both him and me.

No, I don't have video of the crawling yet. Mark has both the camcorder AND the camera in Minnesota so that he can bring home photos and videos of our new house. But I'll share video when I can.

Question for any readers out there with little ones with designer genes. Do any of you use NACD? What are your impressions (good/bad, whether you use them or not)?

Thanks for continuing to pray for our little guy.

Wednesday, August 5, 2009

Monday, August 3, 2009

Matthew is 6 months old!

The pants are a 6/9 and looked like they would fit well based on length. Unfortunately, he couldn't sit up in them because there wasn't enough room for him to bend!
Two very tired boys (check out Matthew's thighs!)
I'm getting... very...

Today is Matthew's half-birthday. He's still quite the chubby bubby. He weighed in at 20 pounds (88th %ile), a mere 11 ounces lighter than Micah's current weight (though that is not Micah's highest recorded weight... he's down almost a pound based on the weight check on Saturday at the pediatrician's office when we were trying to figure out why he's had vomiting and diarrhea for almost 2 weeks now... maybe I'll share more about that kid's medical stuff sometime in the near future).

Anyway, Matthew is 26.5 inches long (59th %ile). So it appears, at least for now, that the poor kid is the unfortunate recipient of my build and not Mark's (Nathan is usually around 25th %ile in weight and 75th %ile in height, more closely resembling his father's build).

Matthew is a super happy baby as long as he's being held. He has this annoyingly loud happy screech. He puts everything in his mouth, which is what most babies do, but I had forgotten that since Micah puts NOTHING in his mouth (including paper, which he loves to play with and I've occasionally forgotten to move out of Matthew's way). Matthew is sitting independently and can flop onto the floor without crashing too hard. He likes to roll around, but hasn't figured out army crawling yet. I'm sure it won't be long.