Sunday, November 30, 2008

Wii Love Thanksgiving

We had a great Thanksgiving. I can honestly say I have never eaten so many rolls...between Sarah's rolls and my mom's rolls over the last few days, I think I ate at least a dozen. And I don't regret a one...I love bread. If I were a superhero (and all moms are) that would be my kryptonite.
Anyway, Jenna's super-cool friend, Hannah, let us borrow her Wii for a few days, and with our extra time off around Thanksgiving we got in quite a few games. There are two really awesome things about the Wii. First, even if you are really horrible at a sport in real life, you can totally smoke all your friends on the Wii. And second, if you take pictures of people playing, it looks pretty hilarious.

(See. That was bowling in case you couldn't tell.)
Connor also quite enjoyed the Wii. His physical therapist actually suggested it as a good activity, and he took right to it and began practicing. (That is what he's saying, in case you can't tell.) Maybe Santa will bring us one for Christmas. Wii or you think we can convince the insurance to cover the Wii?

Sunday, November 23, 2008

The Winter Zoo

I kept thinking it might be fun to go to the zoo in the winter...after all, our pass is good year round. And they do have several inside buildings that are heated. In the summer time I never want to stay in the buildings too long cause that's where the AC is so everyone is there. Then, I talked to our friend, Jill, who said she loves taking her kids to the zoo in the winter...and it was settled! So we grabbed Alyssa (who sadly/happily is once again employed and very soon will not be able to play anymore), bundled up Connor, and headed off to the indoor "Islands" exhibit and Herpaquarium at the zoo. It turned out to be a really great idea. As we were walking in, a class of elementary schoolers was leaving, and besides them I think we saw three other families the whole time we were in the buildings. Usually Connor is quiet around lots of other people, but with just us there he talked and talked, and we got as much time as we wanted to look at whatever he liked.

By far the best part was the orangutans. Connor's favorite at the zoo is always the monkeys, and they are what he calls the "big monkeys"...and luckily they're inside. So we parked ourselves on a bench in front of the big window into their area to watch them play. After a minute or two, one of the zoo docents came into the room on her way some place else, and stopped to chat with us. One of the orangutans, who we learned was named Amber, obviously recognized the lady and came right up to the window to see her. It is one thing to see them from a few feet away, and another thing to actually interact with them.

She told us that Amber loves you to pull shiny things out of your pockets, so we pulled out wallets and cell phones, and everything we could think of, and Amber would put her finger up to the window and point at it if she liked it. It was an amazing experience and we will definitely be back.

Monday, November 17, 2008

Weather Turning Colder...Time for Wheelchairs!

We woke up on Sunday morning to our first snow...okay so it was just a light dusting, but it was still fun to see. I've always loved the idea of a white Christmas (and that movie), but your dreams change a little when you get married, have a family, and have to drive around a bunch on Christmas day.

We knew toward the end of this year we'd be looking at getting a wheelchair for Connor...and that time has come! We had the wheelchair guy out to our house today for about the third time. I was really excited for him to come because the chair he was bringing out was a brand new model that lowers itself all the way to the Connor can crawl up in it all on his own! He's made it clear how independent he is, and I think this will really help him mobility-wise. Sometimes it is really hard to watch all the kids he's playing with run around and he's just left behind trying to crawl to catch up with them. This chair goes pretty fast, so I think he could probably beat a lot of them in a race (and probably mow them down--he's not too good at steering yet). And I know that a big ol' chair like this is not really advantageous for running around with little kids, but at least he'll be able to explore his environment and go where he wants to go. And he's only getting bigger so it is getting a little harder to carry him around--this should help with that, too. He'll probably just use this when we leave home for something, but I am still just so excited for him to have it and all the opportunities it will give him.

Connor even got to drive it all on his own...with Dad right next to him. In this video the chair is tilted back and moved out in front a little so it appears much longer that it would be in a normal position. But this thing can elevate him all the way up to reach the kitchen counter if he wants...not sure if that is totally a good thing.

Our next step is insurance approval. We are a little worried because the retail cost is about $24,000 (I know!! It's as much as new car!!). But they said they've gotten them approved before and he is delivering one next week to somebody else, so it is all a matter of justification I guess. We'll just hope for the best. Pray for our wheelchair!!

Thursday, November 13, 2008

The Vegetarian Who Runs

Our little Connor is growing by leaps and bounds. I've talked in previous posts about his desire to be independent, and this last little while he has grown even more so. In the last few weeks, Connor decided that food was no longer a necessity, and that he only needed milk and juice to survive. We tried every food we could think of that any kid might like--macaroni and cheese, hot dogs, fish sticks, chicken nuggets, chips, cookies, crackers--you name it we tried it. I didn't care what he ate as long as it was something. We did get him to eat saltines, pudding sometimes, and ice cream. But...most of our meals ended with Connor crying, me crying, or Adam walking out of the room in frustration.

He has done this before, but it was due to a stomach flu and passed quickly...and this did not. I thought maybe it was the Carnitor we started, but he stopped eating before that. So we were pretty stumped, and it got to the point where I was almost hysterical. The kid already has to have Carnation Instant Breakfast in his milk to give him more calories, and if he doesn't even eat the foods in his regular diet then all was pretty much lost.

So then, Adam suggests that if he likes to still drink maybe we puree up his food and feed it to him that way. I disagreed--telling Adam he needed to chew for healthy teeth and that I was sure he would change his mind or we would find something he would eat. After all, I'm the all-knowing mom, right? And somewhere in the back of my mind I was worried the SMA caused a weakness somewhere, and he was no longer able to I needed him to do it--just to prove to me that all was fine with his muscles.

Then, a few nights ago, he spends the evening with my mom. We arrived back at her house to hear the news that he ate applesauce and pureed pears, with a STRAW. Adam was right. I was wrong. He thought the straw was fun and exciting, and will try most things through it. And today for lunch, he ate his saltines with peanut butter, whole corn (with a spoon!), and applesauce with a straw and spoon. So maybe he'll be a Vegetarian for awhile...I don't care, as long as he's eating. (Can you puree hot dogs??)

Also, a few days ago, our independent Connor visited Bellarmine University to give the students in the lab our physical therapist (PT) teaches an idea of how to work with kids with SMA. Connor (and my) favorite part was the "running" on the treadmill. Okay, so he wasn't really running, but it was faster than I've ever seen him walk. He did great and was perfectly happy the whole time we were there. I think he just liked all the attention. And at the end of the day, his PT was his favorite person, because she gave him a brand new broom!

Check out the video of him on the treadmill:

The Man in My Life

What's your husband's name? Adam Jared DeLuca
How long have you been married? 5 years, 3 months, 4 days
How long did you date? We met on 10-26-02, were engaged in May 2003, and got married in August 2003...just past 9 months
How old is he? 27
Who eats more sweets? Hmmm...we don't keep much in the house, and when we get it we pretty much share. Except for the Nutty Bars...sorry, sweetheart.
Who said "I Love You" first? We disagree about this...he says he did, but the way I remember it we were having this conversation about it and he said several things similar to that and I was the one who got the drift of what he was trying to say and said it first...either way, we were both on the same page. :)
Who is taller? Adam, by a foot.
Who is smarter? I think we would agree it's a toss up...we each have our areas of expertise.
Who does the laundry? I would like to, but Adam usually beats me to it. Like this morning.
Who pays the bills? I do, but he occasionally "audits" my work.
Who sleeps on the right side of the bed? Is that looking at the bed or from in the bed? Right now from in the bed I'm on the right, but we switch every couple of months. Don't know why.
Does he snore? Not since he lost 50 lbs. the first year we were married.
What does he do in his spare time? Louisville football & basketball, playing basketball with his friends, playing football and basketball on Playstation, reading his Louisville sports magazine (see a theme here?)
Who mows the lawn? When Adam was in school, it was me. (I think the neighbors thought I was weird for mowing the lawn when I was 6 months pregnant...and Adam got mad at me.) Now it is pretty much Adam, unless I decide I want the exercise.
What is his favorite candy bar? Reese's Cups
Who cooks dinner? Me usually, though Adam is always quick to offer if I look tired and haven't started when he gets home. He has really expanded his repertoire.
Who drives? Adam
Who is the first to say they are wrong? Adam. I am working on it though. A bit.
Who kissed who first? A joint effort. Adam got himself right in my face, which I didn't have the guts to do....and then I just leaned forward and kissed him.
Who asked who out first? Our first official date was after we had already kissed so we did things a little backwards...but Adam asked me to lunch at Ruby Tuesdays.
Who wears the pants? I like to think it's me, but the truth is he has the last word.
Does he say he loves you every day? More than once.
I tag: Lynnie, Jessica R., and Kristen K.

Tuesday, November 4, 2008

The Meds Begin

For months and months, as we visit each of a million new doctors, we have been asked, "What meds does Connor take for SMA?" My answer was always, "Nothing." We've never been given anything and we've never been told to take anything. But each time I was asked that, something (very paranoid) inside me was yelling, "SHOULD I BE?? WHAT DO YOU KNOW THAT I DON'T? ARE OTHER SMA KIDS TAKING SOMETHING? IS THERE SOMETHING OUT THERE THAT CAN HELP HIM THAT HE'S NOT TAKING??"

And the truth is, there is nothing. Nothing that cures this or can take it away from us. Nothing to make the progression stop. Yes, there are some things that some families feel makes it slow down in their kids, but most have yucky side effects that could make some kids worse. That just seems so backwards to the way things should be. There is always something you can do...if you get an infection, you take an antibiotic...if you have a sore throat, you can use that yucky spray...if you get really sick, you go into the hospital and get some major drugs, are maybe hooked up to a machine or two for a few days, and then you start to get better. But my child has this horrible illness that took away his walking and makes him fall all the time with the simplest tasks, and makes me scared to death of the common cold, and will only get worse...and yup, we're taking nothing.

But today, we have something! This morning Connor took his first dose of Carnitor. It is supposed to help him use energy more efficiently. (And judging by the look on his face that is some pretty nasty stuff. I think we'll hide it in some juice tonight.) In four weeks we start the Co Q-10, an over-the-counter supplement that helps the mitochondria in his cells with protein coding blah blah blah biology I don't remember from college.

So, since our life has now become backward, I guess I get a free pass...a free pass to be excited about taking some meds that in the back of my mind I know really aren't doing much...but hooray for SOMETHING!

Monday, November 3, 2008

Mr. Independent's Halloween

This year was the first year Connor really got into Halloween. And of course we did all the usual stuff, which Mr. Independent had to be a part of but in his own way. Before Adam went out of town, we (finally!) carved our pumpkins from Gallrein Farms. Guess whose is whose!

Mr. Independent is very into knives. Don't ask me why--I promise we aren't violent people. He insists on having a knife at every we have some kid knives and cheeseball knives that are solely his. But instead of letting him anywhere near the sharp knives this time, we went the marker route.
Next, we went to our Storytime Halloween Party. Elsie (aka SuperGirl, aka Connor's cousin) is in our group as was as cute as always. They had tons of "pupcakes" there, and I tried to feed Mr. Independent his in hopes of preserving the costume. But alas, he would have none of it and insisted on holding it himself to eat. He did get frosting on his giraffe leg, but I think the spots hid it pretty well.

And finally, on Friday night, we went trick-or-treating. Mr. Independent was adamant the he ring each doorbell himself, and also that he needed to choose a piece of candy from the bowl instead of waiting for it to be placed in his "pumptin." (He got away with it because he is little and cute, but we're going to work on that for next year.) And when all was said and done, his favorite thing was not the tasty chocolate or yummy candies he got--nope, he just wanted to go home and eat the peanut butter crackers.