So, the botox started to kick in Saturday night and by Sunday morning it had fully kicked in. I can breath quite a bit better. Before, I could only walk at a snail's pace without being in danger of passing out. Now, I can walk at a normal pace without any problems and do other light acitivities. I don't think I could go workout or anything that strenuous. My vocal chords are still closing together if I breathe too deeply too quickly, but not the rest of the time. I can finally get a deep breathe so long as I do it slowly.
The downsides: I can barely even whisper, and if I try to talk too much, I can't even do that. I had to buy a wireless keyboard for school so I can type what I need to say to the kids onto the smart board. I can't cough. When I try, I sound like I've been smoking all my life and I can't quite. I can hardly drink anything without choking, and therefore going into a coughing fit.
I'm hoping that these drawbacks will subside a little, but that I will still be able to breathe ok, but we'll just have to wait and see.
Tuesday, March 30, 2010
Saturday, March 27, 2010
breathing update
I went to see a new ENT yesterday and figured I'd give everyone an update on where we are. First, I figure I'll give a recap for those of you who may not know everything that's been going on. The recap is in italics, so you can skip that part if you want to.
7 weeks ago, I noticed that I was having trouble getting a deep breathe. This came on very suddenly; one day I was fine, and the next I couldn't breathe. I went to the doctor that day. They did a chest x-ray and didn't see anything, but decided to go ahead and treat me for pneumonia. Two days later, there had been no change and I went back. They put me on more powerful medicines and an inhaler and told me to call back in two days if there was no change. Two days later, there was still no change and so my doctor scheduled me to get a cat scan of my chest. That showed nothing either, so she then referred me to a pulmonologist. He did several test in his office and decided that I probably had asthma along with some spasms in my bronchials. I really didn't feel that this was right, but went ahead and tried the two inhalers he wanted me on for the next week. They did nothing either. My inability to breathe deeply (even walking at a normal pace is too much exertion) is constant throughout the day. The inhalers made absolutely no difference. I went back to the pulmonologist after a week. The first time, I had felt like he had really not listened to what I had to say as much as he should have. Also, a noise had developed when I would try to breathe deeply and I felt that he had kind of brushed that aside and not really paid attention. But, the second time he really listened and said I needed to go see and ENT. So, a week later, I went to get a scope done. Thankfully, the ENT was able to see right away what the problem was. Every time I breathe deeply or quickly, my vocal chords are shutting together and almost completely blocking off my air way. Because this condition is so rare (the ENT has only seen it once before), he wanted to refer me on to a different ENT with more experience. Due to a lot of failure to communicate, that ended up taking three weeks.
So, yesterday morning was my appointment with the new ENT. He did another scope so he could see for himself exactly what was happening. He was actually really surprised that I'm not having muscle spasms anywhere else (I guess most people that have this do). After the scope, he told me I basically have three choices: 1. just learn to live with it and possibly it might go away some day, 2. have botox injected into my vocal chords (which may or may not help) every three months unless/until it goes away on its own, or 3. have a tracheotemy (which alsos may or may not help and is obviously an extreme measure). He then told me that today (yesterday now) was a botox day, so I could do it then or I could think about it and do it in a month (he only does it once a month). Well, having already lived with this for almost two months, and having already read on the internet that botox was a possibility, there was no way I was going to wait another month to try it. So, yesterday afternoon I went back and had the botox done. He had speech pathology students in that day following everybody around. You know you're unique in a bad way when the doctor comes in after you've been left alone with the students and, in a really excited voice says, "Did she tell you what's wrong with her? Huh?". It's supposed to take around 48 hours before it works, if it's going to. I'm supposed to call back next week to let him know if it's helping. So far, there's been no real change. My throat feels a little weird, but there has been no change in the breathing. Also, a side effect is that I may not be able to talk any louder than a whisper.
7 weeks ago, I noticed that I was having trouble getting a deep breathe. This came on very suddenly; one day I was fine, and the next I couldn't breathe. I went to the doctor that day. They did a chest x-ray and didn't see anything, but decided to go ahead and treat me for pneumonia. Two days later, there had been no change and I went back. They put me on more powerful medicines and an inhaler and told me to call back in two days if there was no change. Two days later, there was still no change and so my doctor scheduled me to get a cat scan of my chest. That showed nothing either, so she then referred me to a pulmonologist. He did several test in his office and decided that I probably had asthma along with some spasms in my bronchials. I really didn't feel that this was right, but went ahead and tried the two inhalers he wanted me on for the next week. They did nothing either. My inability to breathe deeply (even walking at a normal pace is too much exertion) is constant throughout the day. The inhalers made absolutely no difference. I went back to the pulmonologist after a week. The first time, I had felt like he had really not listened to what I had to say as much as he should have. Also, a noise had developed when I would try to breathe deeply and I felt that he had kind of brushed that aside and not really paid attention. But, the second time he really listened and said I needed to go see and ENT. So, a week later, I went to get a scope done. Thankfully, the ENT was able to see right away what the problem was. Every time I breathe deeply or quickly, my vocal chords are shutting together and almost completely blocking off my air way. Because this condition is so rare (the ENT has only seen it once before), he wanted to refer me on to a different ENT with more experience. Due to a lot of failure to communicate, that ended up taking three weeks.
So, yesterday morning was my appointment with the new ENT. He did another scope so he could see for himself exactly what was happening. He was actually really surprised that I'm not having muscle spasms anywhere else (I guess most people that have this do). After the scope, he told me I basically have three choices: 1. just learn to live with it and possibly it might go away some day, 2. have botox injected into my vocal chords (which may or may not help) every three months unless/until it goes away on its own, or 3. have a tracheotemy (which alsos may or may not help and is obviously an extreme measure). He then told me that today (yesterday now) was a botox day, so I could do it then or I could think about it and do it in a month (he only does it once a month). Well, having already lived with this for almost two months, and having already read on the internet that botox was a possibility, there was no way I was going to wait another month to try it. So, yesterday afternoon I went back and had the botox done. He had speech pathology students in that day following everybody around. You know you're unique in a bad way when the doctor comes in after you've been left alone with the students and, in a really excited voice says, "Did she tell you what's wrong with her? Huh?". It's supposed to take around 48 hours before it works, if it's going to. I'm supposed to call back next week to let him know if it's helping. So far, there's been no real change. My throat feels a little weird, but there has been no change in the breathing. Also, a side effect is that I may not be able to talk any louder than a whisper.
Friday, December 11, 2009
Tuesday
In the car on the way home today, we were quizzing Dylan on the days of the week. He was doing really well, except, no matter how many times we told him, he couldn't remember what day came after Monday. After about five minutes, Shianne started correcting him in this funny voice that had Dylan and I cracking up (Shianne doesn't see what's so funny about it). So I got her to do it again at home and took a video. You'll have to turn the sound up to really hear her. (You'll have to scroll all the way to the bottom to turn of the music so you can hear the video)
Friday, December 4, 2009
open house
Last night, the kids had open house at school. Before it's always just been going to their classrooms and looking at all of their work. But this year they changed the format to performances. Both are kids time slots overlapped but they weren't in the same place, so things were a little crazy. Thankfully, Shianne's performance was one she repeated multiple times for thirty minutes so we were able to see both.
The fifth graders did a "Night At The Museum" theme. Each child had to pick a famous person several weeks ago, research them, and write a script describing themselves. Then, last night, they dressed as their character. They were all scattered throughout the school around ten feet apart. By each child was a desk where they had a picture and namecard of their famous person and a money jar. Every time someone put money in the jar, they came to life and repeated their script from memory. All the money went to a charity. Shianne chose to be Anna Pavlova, a famous Russian ballerina. She did an awesome job. It's a little hard to hear her in the video with all the other people around.
The fifth graders did a "Night At The Museum" theme. Each child had to pick a famous person several weeks ago, research them, and write a script describing themselves. Then, last night, they dressed as their character. They were all scattered throughout the school around ten feet apart. By each child was a desk where they had a picture and namecard of their famous person and a money jar. Every time someone put money in the jar, they came to life and repeated their script from memory. All the money went to a charity. Shianne chose to be Anna Pavlova, a famous Russian ballerina. She did an awesome job. It's a little hard to hear her in the video with all the other people around.
Thursday, December 3, 2009
please vote for my advent calendar
Michaels is having a contest for handmade crafts. I entered my advent calendar and would love it if you would go vote for me. Actually, you rate it rather than vote. The rating symbols (they're not stars, I can't remember what they are) are under the picture. Here's the link: http://www.michaelscontest.com/uploads/2025
Wednesday, November 25, 2009
advent calendar
I have been wanting to get one of those nice advent calendars that you can put little things in. When I was little and we lived in Germany, we always had the ones that had a piece of chocolate every day. Until recently, I couldn't ever find any of those here. The last two years we did have the chocolate ones, but this year I wanted to do something more meaningful. I wasn't having much luck finding one I liked. I did find two, but one had doors that would have fallen open too easily and the other was almost $40, way more than I wanted to spend. But, about a week ago, I saw an idea on someone's blog for using 2 inch mint tins from Wilton (I got them at Michaels in the wedding section). They had used velcro to mount them on canvas, but I used magnets and put them on a cookie sheet (which I spray painted). I think it turned out really cute. Inside are little ornaments, including a nativity set, to go on one of those miniature trees.
Here's the whole thing.
And here's a close up.
Thursday, November 5, 2009
Halloween
The day before Halloween we went to "Haunt the Zoo". We had never been before, but we had a great time (other thant the super long line in the beginning). All the treat stops are sponsored by businesses and most give out really good stuff. The kids got two snack size chip bags and and 8 oz Dr. Pepper along with the old standbys like m$m's. At all the treat stops, and several places in between, there were scenes that the kids could pose by. Dylan was Obe-Wan-Kanobe and Shianne, who was originally going to be a princess, decided to change to match Dylan and be Queen Amadala (which was fine with me because it didn't require a change of costume).
Shianne and Dylan being eaten by a shark.
Shianne in the fairy forest.
For Halloween night, we went to my parents neighboorhood, which we always do because hardly anyone in our neighboorhood passes out candy. William (our puppy) went with us. I think he was more excited about trick-or-treating than the kids. He would run up to all the houses. We usually tried to keep him back a ways so he wouldn't upset other people's dogs and he would whine that he couldn't go all the way to the door with the kids.
Dylan used one of the lightsabers we have for the Wii which really lights up, though it's hard to see in the picture.
William was dressed as a hot dog. It kept slipping to the side and he wouldn't stay still, so it was hard to get a good picture.
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