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.