Sunday, November 30, 2008
Sunday, November 23, 2008
Monday, November 17, 2008
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 floor...so 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
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 normally...so 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:
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
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
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.