When do you start brushing a baby's teeth?

That's the question she asked. What she meant was "Why does your kid have green teeth?".
I don't venture out into the real world very often. This morning I manned the VBS nursery at church along with my friend Jonie and a few middle school girls who are crazy about babies. I forget that most of the 300+ regular attenders at my church know only that Noah was born really early and was really sick and possibly that I have to spend a lot of time in the house and at doctor's appointments. They might know that he's deaf or that he sometimes walks into walls or tables because of his vision, but green teeth doesn't come up much. So I was surprised when Jennifer, who I've known for years (I was her third grade teacher, back when I had a "real job"), asked me about dental hygiene. She's a rather intelligent child and has younger siblings, so she's quite aware that two year olds do, in fact, get their teeth brushed. But having been raised to be polite the idea of asking "Why are Noah's teeth green?" didn't seem quite right. She's a good kid and I would not have been offended either way, but it's interesting to know what people are really thinking when they see my son. I had someone at the doctor's office on Friday ask if Noah's cochlear implant was to monitor his brain waves. I thought that was an interesting idea. Most comments I get are negative - why would I bring my vomiting, green-toothed toddler out in public? I often want to reply that at least he's not snot-nosed and obnoxious, but that won't help pave the way for future green-toothed vomit monsters so I try to be gracious. It's sad because most people would never make a nasty comment about a child with a medical condition or a disability, but Noah doesn't "look" disabled so anything abnormal about him must be my fault.

Busted!

Noah loves Signing Time videos. Part of our feeding protocol involves watching a video and invariably that is what he wants. He likes the music and the repitition is good for him. Our AVT center director is very anti sign language, but we figured watching the sign language videos wouldn't be an issue since our optho and DoV coordinator said that it would be very difficult for Noah to learn sign language (one of the main reasons we opted for the CI). Well, last night Noah signed "more". He was saying more (he wanted a balloon that I had just taken) and I stuck a bite of veggies in his mouth so he started signing more until he swallowed. Then he started saying and signing more together. You'd think the kid had been signing for years, he was so confident about it. A big part of me wants to shout from the top of a mountain that my little 24 weeker is big enough/smart enough/can see well enough to sign. But then there's that itty little bit that knows we're so busted when we go to speech therapy today. I'm willing to argue my point that he already knows the word more and his language development is much quicker than expected, so it's obviously not hurting him, but I'm hoping it just won't turn into an issue.

Hot Pink Tape

Noah is having trouble learning to walk down steps and up/down ramps so out comes the handy electrical tape. Apparently the bright colors are supposed to help him notice that there are steps there, so that he can learn to successfully maneuver them. I just can't help but wonder whether some navy blue tape or a nice khaki color wouldn't work just as well. Why hot pink or neon green? Do the OTs get a discount on the colors no one else wants? I mean, I want him to see going up an down the steps, but I don't want to attract stray dogs or alien spaceships. If the goal is high contrast I'm sure I could find colors that are contrasting and yet not glow-in-the-dark. I'm all for making any accommodations that Noah needs, but lets be reasonable in our color choices. I'm just not a hot pink kind of girl.

Father's Day

Haapy Father's Day to the best Daddy that Noah could ask for. We love you, Brian.

conversation

Recently heard in a grocery store:
Noah: "eeeeee" (eat) - as he started gnawing on the cart
Mommy: "Noah, don't eat the cart." - removing his teeth from the cart
N: "eeeeee muh" (eat more) - attempting to chew on the cart again
M: "No."
N: "ya" (yes) - tries again but mommy covers the cart with her hand
M: "You can't eat the cart. It's dirty"
N (repeatly, at the top of his lungs): "up" - pulling on mommy's hand; "eeeee muh" (eat more)
Mommy: "Noah, do you want to hold the strawberries?"

What am I trying to say? Well besides the obvious facts that Noah is starting to assert his will, is likely teething, and distraction works, he's started to say 2 word phrases. In addition to "eat more" we've also heard "more bubbles", "more apples", "shoes no", and "up more". What a big boy!

Pulmonology

Noah went to see Miss Mollie today (the pulmonology NP). It was a good visit as far as lungs go. I was worried because we had our first wheezing episode with a cold since our last appointment, but she said his lungs sounded beautiful. We are allowed to cut back pulmocort to once a day for the summer, which is sooo nice. As we were leaving she said "The lungs are the least of your worries.". I imagine that she meant that his lungs are doing really good, not that the rest of our life stinks, but it did get me thinking. When Noah came home from the NICU our biggest battle was to avoid the vent and a trach. All of our energy was focused on not getting him sick and giving him those darn breathing treatments every 3 hours around the clock. Somewhere along the line that changed. In spite of the fact that we still have O2 tanks in the bedroom closet for our 2 year old, he hasn't needed them since he came off of nightime oxygen in August. We went from a baby with severe BPD to a toddler who might actually avoid the family asthma curse. But in the place of lungs we first worried about Noah's seizures, then his kidneys, and then vision and hearing and so on.When Noah turned one he had at least twice as many issues as when he was discharged, and that was a tough time for me. But over the last few months I've been thinking about all of the things that I don't worry about anymore. I much prefer the issues we have now to watching Noah gray and lifeless while the neo did chest compressions and I don't even remotely miss walking into the NICU and checking the vent settings to see if it's a good or bad day. I read today about sextuplets born at 22 weeks - I'm so glad I'm not dealing with their issues right now. I have a lot to be thankful for.

Not THAT disabled...

Yesterday my husband and I met with our pastoral candidate for some one on one time of discussion. We had a few questions to ask him about things that pertain more to our family than the church as a whole. One of the questions we asked was "What do you see the role of people with disabilities in the church?". It saddens me to go to a church and see no disabled people at all. Surely there are disabled people in that community that need God just as much as the rest of us. What are we doing wrong? In any case, he had a wonderful answer about the value of all life and spent some time talking about a program at the church he currently attends called "Special Friends" where church members partner with people with disabilities to make sure that they are able to participate in church activities that might not be as accessible for them otherwise. I have family members who attend that church and I used to visit some of the "Special Friends" at a group home with my grandfather when I was younger. They were mainly adults with developmental or physical disabilities that kept them from being able to live independently. While I appreciated his answer, as I left I remember thinking "Noah's not THAT disabled"). Upon further reflection, I'm not really sure how I came up with that. I mean, how can I judge how disabled a person is? Who's to say that Noah won't be living in a group home as an adult? Is that better than living with mommy his entire life if he can't be completely independent? Maybe it is. The truth is, we don't really know how disabled Noah is. His label is deaf-blind and that's a pretty hefty label for a little man such as himself. The implant seems to be helping a lot with his hearing, but who knows what the future brings. He has enough vision to get around as well as most kids his (corrected) age, but he does have some pretty significant issues with depth perception making stairs and uneven walking surfaces a big challenge right now. They say he'll "just" need large print books in school, but obviously they can't know that for sure. When he can't walk down the street as a teen and order a burger because the sidewalk's uneven and the words on the menu are too small, will he agree that he's not THAT disabled? What about when he can't get a drivers license? Will he be able to live on his own as an adult or will he be too disabled? Will he need a "Special Friend" to help him at church, or will he just stop going because no one cares to make things accessible for him? We just don't know. But I do that we have a church where he'll be accepted for who he is, no matter how different than everyone else that might be. That is a huge blessing and a lot more than some people have.

Pockets

Although we have the new Harmony, Noah wears the Platinum Sound Processor from Advanced Bionics on a regular basis. It's durable and there's nothing to have to keep attached to his ear - only the part with the magnet on his head. Unfortunately, the harness system leaves something to be desired. It's made of a very heavy material and Noah gets overheated very easily, especially with summer coming up. Also, if Noah falls asleep there's no way to get it off him without completely undressing him - not exactly conducive to keeping him asleep. Our solution? Pockets. My mother has sewn pockets on the back of most of his everyday clothes, and it works great! We still use the harness occasionally - especially first thing in the morning when he's in his pjs, but the pockets make life so much easier. We can get to his processor without having to undress him and he's not getting nasty heat rashes from wearing the harness all day. I'm trying to convince my mother to start a business to sell them to other CI users since It's such a useful item. For your enjoyment, here are some of Noah's pockets.

For comparison, here are the harness options that we have (they can, obviously, be worn under clothes).

And the snazzy purple belt clip that falls off regularly (but is great for tucking in the back of overalls).

The Terrible Twos

Noah has proven himself a full fledged toddler. This afternoon I stopped at Ukrops after Noah's Dr.'s appointment. It's the closest grocery store that sells soy yogurt and since he prefers soy I stop there whenever I get the chance. Noah loves cold things and wanted to lick/suck on the outside of the yogurt containers. I didn't think that was the best idea. Holy tantrum, Batman! Noah kicked, screamed, and threw the yogurt containers at a poor woman in the bakery. I made a quick retreat to the checkout line where Noah tried to climb out of the cart and onto the conveyor belt. Being the mean mommy that I am, I was against that too. Thankfully we only had a few items so my public embarrassment ended quickly. I got a few good kicks on the way out and by the time we got to the car Noah was totally calm. I guess I should be upset, but I'm actually kind of proud. A tantrum is such a normal thing... People understand. I remember the first time Noah's apnea monitor went off in public -people looked at me like I had 3 heads. And explaining to a store employee why there is 6 oz of vomit on the floor (and how I know that it is, indeed, 6 oz.) is really not my idea of a good time. Maybe Noah will give up the vomiting and just throw tantrums. That would be nice.

A New Pastor?

The pastor of our church has recently retired and we are meeting the pastoral candidate this week and voting next Sunday whether he will be our new pastor. Brian is at a men's breakfast this morning eating pancakes with him, and I will meet him tomorrow when he preaches at the Sunday service. This is not a new event for me. My daddy was a church planter which means he started the churches and then helped them bring in a new pastor once they were established and went off to start a new church. This is my first pastor search since having a preemie, though, and I find myself wondering different things. When Noah was in the hospital we had a lot of clergy visits both from pastors at our church and others we are associated with and the hospital chaplains. I had never realized what an important part of pastoral ministry hospital visitation can be, and I find myself wondering more about this genteman's compassion than whether his sermons have 3 main points. Even now that Noah's older I am much more in need of caring words and gentle understanding that I ever have before. I have high hopes for this gentleman because he has been a hospital chaplain and must have some understanding of what my life has been like over the last few years. The fact that he was a hopital chaplain also makes me wonder if he was in fact THE hospital chaplain who came as an ethics committee representative when they were trying to convince us to disconnect Noah's life support. I find myself hoping that he is so that he can see that we made the right choice. Noah certainly isn't in a chronic vegetative state like they told us he would be, and when the neurologist gave us his MRI results I didn't hear him mention the word "mush" even once when refering to Noah's brain.