A Little Something Extra

Friday, January 30, 2009


Two posts in one day... amazing! I thought it was time to post some photos, since I haven't done much of that since before Thanksgiving.

I realize it's probably time for a real haircut, but I just can't bring myself to do it. I mean, he doesn't even have a tooth yet. But this photo makes him look big...

For some reason, Micah doesn't seem to like Mark trying to feed him some juice on a flat spoon (which is all he's getting by mouth, and only a little bit before he coughs). I think Micah gets intimidated because Mark hasn't tried this at Micah's eye level. First he gives him the lip, then the scream!

But only seconds later, he's smiling again.
Daddy and his boys for the nightly reading session.

Micah health update

We took a trip to the pediatrician yesterday because Micah was coughing more and it sounded sort of wheezy. As usual, by the time we got there he sounded just fine. But just to make sure, they did an RSV test since there are lots of cases going around our area and she was worried about baby's arrival next week. Fortunately, he does not have RSV. She also ordered a chest x-ray to make sure that there's no fluid in his lungs. He had that this morning and all looks fine. As you can see by the photo, it's a horrible contraption and trust me, he let us know that he was not fond of it.

So, we continue with the Nasonex and hope that his congestion goes away one of these days.

Tuesday, January 27, 2009

ENT visit

No quick fix offered, but we're going to try Nasonex for a month and see what happens. The good news is that his right ear didn't appear to be infected anymore so at least that's taken care of (though we have to finish this round of antibiotics). He couldn't see into his left ear very well, but that wasn't the one infected last week anyway. This doc commented on how small his little nasal passages were and that his tonsils were inflamed. He didn't bother scoping to check his adenoids because it wouldn't change his course of action, which is to try the Nasonex. If this doesn't help his congestion after a month (A MONTH???), then we'll have to see an ENT in Milwaukee to discuss surgery options. If things are still bad in another week or two, though, he might also add another steroid treatment to help with the inflamation. Another consideration is sleep apnea so he wants me to watch him sleeping (LOL... maybe the week after next when I'm up feeding his baby brother in his room).

I just want Micah to feel better. He had multiple bouts of gagging and coughing today. But even with all of that, he had a great 25 minutes with his PT today. He actually sat for a few mintues without using his hands. Missy was encouraging him to reach for toys and he did it and didn't tip over. But after 25 minutes he complained very loudly. "Age appropriate behavior." It's actually a good thing for him to protest. :-)

The frames for his eyeglasses arrived in his size today at the optician so I was able to see what they looked like on his little face. So cute! The lenses will arrive in a week. I'll post pictures when I can. I'll be in the hospital when his new glasses arrive.

Monday, January 26, 2009

New J-tubes (yes, plural)

In my previous post I mentioned Micah's congestion. Well, we are now on his third antibiotic for an ear infection (and possible sinus infection, though I'm not convinced of that). He's been throwing up every day. At first it was just in the mornings after it seemed he was trying to cough up the mucus junk that was draining overnight. Now he's doing it during other times of the day too. And by the way, this is likely the cause of him needing TWO new J-tubes in the past week because all the coughing/throwing up has dislodged the tube.

We had some major tube issues at the beginning of January. So combine those issues with the latest, and Micah has been under radiation six times this month. A J-tube is much more complicated than a G-tube. If he "just" had a G-tube and it came out, we would be able to replace it ourselves. But the J-tube has to be threaded through his stomach, pylorus, and duodenum, before being positioned a few inches into the jejunum. This process requires fluoroscopy so that the radiologist can thread a wire to the right position before placing the tube there. I've made jokes about Micah beginning to glow sometime from all the radiation, but it's really not that funny to me anymore. The amount of radiation he is receiving is of major concern to us.

And... it's 1.5 hours each way to Children's Hospital to get his tube replaced each time this happens. We can't get it done locally because Micah has a custom J-tube. He can't get a MIC-Key button until he's about 20 pounds. That would be a more "standard" tube and we could keep one with us to take to our local hospital and have it replaced there rather than driving to Milwaukee.

But those are just details. Really, we want our baby to feel better. He's miserable and sleep-deprived. He wakes up every 2 hours or so overnight because of his congestion and/or discomfort. And he has his coughing/vomiting sessions during the day and he's not napping longer than 30-45 minutes twice a day.

He sees an ENT doctor tomorrow who will likely scope him through his nose to check his adenoids, etc. Please pray that he will find a cause for Micah's congestion and offer a simple solution that will eliminate Micah's vomiting and discomfort. Please pray that we would all find a way to sleep as we're very tired.

Update on littlest baby: I had my last OB appointment this morning and the baby is doing great. After reading the ultrasound report, my OB said, "I bet you're glad you're delivering this one via c-section!" He is a good-sized boy already (estimated at 6lb6oz). But... his head and stomach measure in the 98th percentile. Just 8 more days...

Friday, January 16, 2009


Micah had his one-year well visit today and he weighed in at 18lbs 5oz. Wow! That's great for him. He's tracking right on the 50% percentile for weight on the Down syndrome growth chart (that's basically where he's been since his heart surgery, barring the recovery period following his nasty GI bug back in early October). He just made it on the weight chart for a "typical" kid at one year (2nd percentile). He's not on the height chart for "typical", but at 27" inches, he's almost 25th percentile on the Down syndrome height chart. He's the opposite of our skinny minnie Nathan (who's 25th percentile on weight and 50% percentile on height). But he does have a big head! He's almost 90th percentile on the Down syndrome chart and he's 23rd percentile on the "typical" chart.

After one week on an antibiotic, it appears Micah still has an ear infection in one ear so we're changing antibiotics. He has been congested for almost two months now. The antibiotic probably won't help the congestion. After another week, if he still isn't sleeping well, I'm probably going to ask for a referral to an ENT to figure out what's going on inside this kid's nose. We've had the humidifier running every night in his room and spraying saline in his nose every time he wakes up (which is between 3-5 times every night). It's getting rather old and tiring. And he's not exactly happy having a stuffy nose all the time.

We have a referral to a private occupational therapist now, since Micah's OT through county services has been deployed to Iraq. The county is looking to hire someone to temporarily replace Becky, but until then we'll go with an OT over at the hospital. It's important to me that we make sure Micah is continuing to use both of his hands equally given the short fingers on his left hand.

Wednesday, January 14, 2009

Glasses for Micah

We saw a "new" pediatric ophthalmologist today in Madison (and it took a long time to get there with the crummy roads... many thanks to my mother-in-law for driving us there). Micah's far-sightedness seems to be a bit worse than the last time he was seen. This doc thinks there's a possibility that by putting Micah in glasses to correct the vision issue, that might address his strabismus (cross-eye) and eliminate the need for surgery. We're all for that!

So... anyone out there reading this who has experience with a one-year-old in glasses, please share your thoughts on what kind works well. There seems to be an option that wraps all the way around. Not very attractive, but the idea is to keep the glasses on his face and survive being tossed on the ground a lot, I guess.

On a separate note, I spent 8 hours in Labor and Delivery on Monday. My OB sent me up there after less than 30 minutes on a monitor. Baby's heart rate dropped significantly during a contraction and she wanted to make sure it didn't continue to happen. It only happened once more, but I did have an increase in contractions. So I ended up getting a steroid shot for baby's lung development (and the second shot yesterday). I'm also taking procardia to hopefully reduce the contractions. I'm 33 weeks along, and we REALLY want to make it to Feb 3rd for my scheduled c-section. I'll be 36 weeks then. Yes, even that is early. That's due to the complications I had with Micah's birth (I had a major uterine window and almost ruptured, so the docs don't want me to go into labor). Anyway, please pray that this baby would continue to bake healthily for almost 3 more weeks. Thanks!

Thursday, January 8, 2009

Look, ma!

All of a sudden last night, Micah seemed to "get it." He figured out that he could put his hands on his knees and prop with them to sit (he can't put them on the ground... his arms are so short he ends up at a 45-degree angle). He wasn't doing his typical smiling last night. You could tell he was concentrating hard. I'm so proud of him!
Sorry the video is so dark. My laptop is in the repair yard (aka my brother's house) and we don't have video editing software on the spare computer.

Monday, January 5, 2009

Happy birthday, sweet Micah

The day has come... Micah turned one year old today. It's a bittersweet day. It's a blessing that he's even alive given everything that has gone on with him this year, especially that he almost didn't come out of the OR following his open-heart surgery because they had a hard time getting him off the bypass machine (he went back on bypass twice). But it's also a sad day for me because it's a major life marker, so what he is not doing becomes very evident (i.e. not eating anything by mouth and not sitting independently).

I'll post more photos later. We're having some computer issues and I don't want to be online very long.