I have something new! My teacher brought me a radio that has a special switch attached to it. The switch is on a handle that goes right next to my head. If I turn my head to the right, then I can make the music come on. If I turn my head again, then I can make the music turn off. It's really neat because I am in control. (I'm usually in control around here anyway, but now I can decide if I'm going to listen to music or not.)
I also have another cool thing - actually two cool things. I have two little "recorders" that we can attach to my side head rests. Dad and Mom can record "YES" on one and "NO" on the other. That way, I can learn to turn my head to "say" these words in response to questions. Right now we don't have any way to attach them so that they stay on, but I'm sure Dad or my teacher will figure something out.
The other day, I was sitting on Dad's lap. We had just found out about a friend of ours who has a brain tumor. Dad said a special prayer for her. Then he asked me if I thought it was a good prayer. I stiffened up and said "YES" in my special way. Then he said more prayers for other people, and I prayed right along with him. I like to talk to Jesus. I know he listens to me, and I know he has angels around me all the time.
Say a prayer for someone special today!
Sunday, February 25, 2007
Sunday, February 18, 2007
February 18, 2007
Today my grandpa came over for dinner. (My grandma is visiting Cousin Addison down south, so she didn't get to come.) While Dad was cooking his world-famous pork tenderloin, Mom showed Grandpa how to do my trach change. This is something that happens every two weeks. First they unhook the trach ties that hold the tubing in place. Then they deep suction me - putting the skinny little tube down my trachea to "suck out the goo." Next, they pull the trach tube out of my throat and put the new one in. Usually I cough a lot before the new tube goes in. Tonight, Grandpa had the "suctioning job," so he took care of getting all the extra goo out of my throat for me. It was successful, so all is well. The one that came out has been sterilized and is ready in my "Go Bag" for the next scheduled change.
I'm falling asleep now - I probably should have been asleep an hour ago, but sometimes I just don't want to give up that easily. I want to know what's going on. But now it's late and I need to drift off into dream land. Tomorrow, Mom doesn't have to go to work, so she and Ian will be home with me all day. (First they have to take Thor to get his shots in the morning, then we'll all hang out together.) I think Mom said we get to iron a bunch of clothes. Yippy skippy. My favorite. Not.
Gotta run. Hope everyone is well and happy!
I'm falling asleep now - I probably should have been asleep an hour ago, but sometimes I just don't want to give up that easily. I want to know what's going on. But now it's late and I need to drift off into dream land. Tomorrow, Mom doesn't have to go to work, so she and Ian will be home with me all day. (First they have to take Thor to get his shots in the morning, then we'll all hang out together.) I think Mom said we get to iron a bunch of clothes. Yippy skippy. My favorite. Not.
Gotta run. Hope everyone is well and happy!
Saturday, February 10, 2007
February 10, 2007
It's Saturday, and today I have a new nurse here learning how to take care of me. She's very nice. I have been so lucky to have really wonderful nurses over the years. Some of my nurses are really like my extra grandmas, aunts, etc. They're part of the family. I guess they have to be since my family is here, too. The nurses have to learn how to deal with life in our house - the good, the bad and the ugly. (Mom says the "ugly" part is when she gets up in the morning and her hair is sticking out all over the place and she doesn't have her "face" on yet. Whatever. She still looks like Mom to me!)
My big brother likes it best when there are no nurses here, but I know that the nurses make things a lot easier for Mom and Dad to get things done around here, run errands, go to work, etc. When the nurses are here at night, then my mom can sleep. That helps her a lot since she has to have a functioning brain when she goes to work! When Mom takes care of me overnight, I usually get pretty "gooey" during the night and she has to suction me. Sometimes I have nights that my pulse-oxymeter beeps a lot and she has to get out of bed to adjust it or see if something is wrong with me. (Sometimes I think, "Oh, it's Mom tonight. I think I'll be extra high maintenance so I can make sure she's here all night.")
I know I'm a high maintenance girl, but what girl isn't, right? I'm a Diva, and my family knows it. They say it's okay, though, because they're just so happy to have me here in the family that they don't care how much work I am! :)
In my first entry I said I might be seeing a new doctor about my "leaking button." Well, I get to see the doctor on March 6, so maybe we can find out what's going on. Hmmm. Another mystery to solve. I'm such a puzzle!
I have to run now. Dad is going to fix a big dinner tonight, and I might have to sit in the kitchen with him and supervise while he prepares the food. (Dad is the real chef around the house. Mom is good, too, but she doesn't enjoy it like Dad does.)
God's blessings to everyone!
Love,
Emma
My big brother likes it best when there are no nurses here, but I know that the nurses make things a lot easier for Mom and Dad to get things done around here, run errands, go to work, etc. When the nurses are here at night, then my mom can sleep. That helps her a lot since she has to have a functioning brain when she goes to work! When Mom takes care of me overnight, I usually get pretty "gooey" during the night and she has to suction me. Sometimes I have nights that my pulse-oxymeter beeps a lot and she has to get out of bed to adjust it or see if something is wrong with me. (Sometimes I think, "Oh, it's Mom tonight. I think I'll be extra high maintenance so I can make sure she's here all night.")
I know I'm a high maintenance girl, but what girl isn't, right? I'm a Diva, and my family knows it. They say it's okay, though, because they're just so happy to have me here in the family that they don't care how much work I am! :)
In my first entry I said I might be seeing a new doctor about my "leaking button." Well, I get to see the doctor on March 6, so maybe we can find out what's going on. Hmmm. Another mystery to solve. I'm such a puzzle!
I have to run now. Dad is going to fix a big dinner tonight, and I might have to sit in the kitchen with him and supervise while he prepares the food. (Dad is the real chef around the house. Mom is good, too, but she doesn't enjoy it like Dad does.)
God's blessings to everyone!
Love,
Emma
Monday, February 5, 2007
February 5, 2007
Hi! My name is Emma, and I’m honored that you’ve clicked on my BLOG. I don’t really know what a BLOG is, but I know it’s a way for me to tell you what I’ve been up to lately.
It seems that everyone around me has been sick with the stomach flu, head colds, sore throats, coughing and fever (including Dad, big brother and Grandma). I’ve had my moments with extra “goo” leaking out of my trach tube, more coughing and a fluctuating temperature, but so far, (knock on wood), I’ve remained relatively healthy in the midst of being surrounded by illness. Please pray that I stay well!
One thing that I have been dealing with lately is a leaking G-button (where the feeding tube goes into my stomach). For several months now, I’ve had days that the site around my button is so red and sore, it really hurts. The stomach acid has leaked up around the tube and burned my skin. Everybody takes extra good care of me and somehow they doctor me up and get it “normal” again. There doesn’t seem to be any connection between when it gets bad and when it gets better. If there is one, nobody has had an “Aha!” moment yet.
On top of that, sometimes I have so much fluid leaking out around the button that it soaks my clothes. Dad, Mom, Grandma and the nurses have been reclining my chair while I’m eating so that as my tummy gets full, there is less pressure on it. It has worked fairly well, but the surgery nurse at the hospital says I might have a motility problem (which means that maybe my stomach is staying too full and it’s not emptying properly). I’ll probably see a GI doctor at the hospital to have it checked out. (Put another doctor on the list, Mom!!! Ugh.)
I turned eight last month and had a birthday party at my house. I really like being the center of attention (as usual). I had purple balloons and one was tied to my chair. It was great fun!
A lot of people have wondered what is going on with the possible surgery on my chest. Well, all I can tell you right now is that unless a surgeon swoops in and announces that he/she is totally confident that surgery will fix me, it doesn’t look like there is any chest reconstruction in my near future. The procedure to enlarge my chest cavity to make room for my compressed trachea, etc. would be so risky that Dad and Mom do not want to take the chance that something would go wrong. They said that the surgery itself would be very, very risky for me and the recovery period would be long and difficult. Plus, we would have to go somewhere far away to have it done, and we can only do bits and pieces of the surgery at one time, so I’d have to go back and forth to the far away place to have this risky surgery done multiple times. I don’t think I’m up for that. I think I’d rather stay at my house with my family and let them devote themselves to making me happy all the time. That’s what people are supposed to do for princesses, right? Be at my beck and call 24 hours a day? Well, that’s what I like!
If everybody takes care of me to keep me happy and healthy, then I thank God for every minute I get to share that time with the people I love.
One of those very special people is my big brother, Ian. When I cry, Ian runs over to me and kisses me on the cheek to make me feel better. It works almost every time. (Sometimes something really hurts and his kisses don’t work, but it still makes me feel better.) Ian got a remote control helicopter for Christmas that he can fly in the house. It’s really neat, and I’ve watched him learning how to fly it properly. I like to hear the sound and watch it go up and down and across the room. He hasn’t flown it into me at all!!! (Thank goodness.)
I stay at home a lot to keep me as healthy as possible, so I get to have a lot of books read to me. That’s one of my favorite things to do! I also like to watch Dora the Explorer on TV, and I like to hear music. One of my nurses sings to me a lot. Another nurse likes to bounce me on the bed (very carefully, of course). I love to play like this!
I’m still wearing my leg braces on and off throughout the day to help my feet/ankles go in the right direction. I also wear my hand/wrist braces. I just can’t seem to keep my thumbs where they belong. Everybody says I’m quite the Houdini because my hand/wrist braces are fairly heavy-duty neoprene with three straps on each one. Somehow I get my thumbs out of the thumb part and wiggle them right in where it’s nice and tight – but I’m not supposed to do that!!!
I’ve been wearing my Passy-Muir valve occasionally during the day, trying to learn how to breathe with it on. It is hard work, but I try to get sounds to come out. When the air has to work its way around the trach tube to come out, it makes me very tired, but I like to hear my voice, so it’s worth the effort. Dad and Mom say, “Emma, you’re such a big girl! I love to hear you talking to us!” That makes me so happy.
All in all, I’m a pretty happy girl. I like to keep my family members on their toes. I can be stubborn sometimes, and I know I keep them guessing when things aren’t quite right with me, but they usually figure it out. One day I hope to be able to communicate YES and NO in a very clear way so that they always know what I want and what I feel.
Thanks, again, for checking in on me! Love to you all and God’s Blessings!!!
It seems that everyone around me has been sick with the stomach flu, head colds, sore throats, coughing and fever (including Dad, big brother and Grandma). I’ve had my moments with extra “goo” leaking out of my trach tube, more coughing and a fluctuating temperature, but so far, (knock on wood), I’ve remained relatively healthy in the midst of being surrounded by illness. Please pray that I stay well!
One thing that I have been dealing with lately is a leaking G-button (where the feeding tube goes into my stomach). For several months now, I’ve had days that the site around my button is so red and sore, it really hurts. The stomach acid has leaked up around the tube and burned my skin. Everybody takes extra good care of me and somehow they doctor me up and get it “normal” again. There doesn’t seem to be any connection between when it gets bad and when it gets better. If there is one, nobody has had an “Aha!” moment yet.
On top of that, sometimes I have so much fluid leaking out around the button that it soaks my clothes. Dad, Mom, Grandma and the nurses have been reclining my chair while I’m eating so that as my tummy gets full, there is less pressure on it. It has worked fairly well, but the surgery nurse at the hospital says I might have a motility problem (which means that maybe my stomach is staying too full and it’s not emptying properly). I’ll probably see a GI doctor at the hospital to have it checked out. (Put another doctor on the list, Mom!!! Ugh.)
I turned eight last month and had a birthday party at my house. I really like being the center of attention (as usual). I had purple balloons and one was tied to my chair. It was great fun!
A lot of people have wondered what is going on with the possible surgery on my chest. Well, all I can tell you right now is that unless a surgeon swoops in and announces that he/she is totally confident that surgery will fix me, it doesn’t look like there is any chest reconstruction in my near future. The procedure to enlarge my chest cavity to make room for my compressed trachea, etc. would be so risky that Dad and Mom do not want to take the chance that something would go wrong. They said that the surgery itself would be very, very risky for me and the recovery period would be long and difficult. Plus, we would have to go somewhere far away to have it done, and we can only do bits and pieces of the surgery at one time, so I’d have to go back and forth to the far away place to have this risky surgery done multiple times. I don’t think I’m up for that. I think I’d rather stay at my house with my family and let them devote themselves to making me happy all the time. That’s what people are supposed to do for princesses, right? Be at my beck and call 24 hours a day? Well, that’s what I like!
If everybody takes care of me to keep me happy and healthy, then I thank God for every minute I get to share that time with the people I love.
One of those very special people is my big brother, Ian. When I cry, Ian runs over to me and kisses me on the cheek to make me feel better. It works almost every time. (Sometimes something really hurts and his kisses don’t work, but it still makes me feel better.) Ian got a remote control helicopter for Christmas that he can fly in the house. It’s really neat, and I’ve watched him learning how to fly it properly. I like to hear the sound and watch it go up and down and across the room. He hasn’t flown it into me at all!!! (Thank goodness.)
I stay at home a lot to keep me as healthy as possible, so I get to have a lot of books read to me. That’s one of my favorite things to do! I also like to watch Dora the Explorer on TV, and I like to hear music. One of my nurses sings to me a lot. Another nurse likes to bounce me on the bed (very carefully, of course). I love to play like this!
I’m still wearing my leg braces on and off throughout the day to help my feet/ankles go in the right direction. I also wear my hand/wrist braces. I just can’t seem to keep my thumbs where they belong. Everybody says I’m quite the Houdini because my hand/wrist braces are fairly heavy-duty neoprene with three straps on each one. Somehow I get my thumbs out of the thumb part and wiggle them right in where it’s nice and tight – but I’m not supposed to do that!!!
I’ve been wearing my Passy-Muir valve occasionally during the day, trying to learn how to breathe with it on. It is hard work, but I try to get sounds to come out. When the air has to work its way around the trach tube to come out, it makes me very tired, but I like to hear my voice, so it’s worth the effort. Dad and Mom say, “Emma, you’re such a big girl! I love to hear you talking to us!” That makes me so happy.
All in all, I’m a pretty happy girl. I like to keep my family members on their toes. I can be stubborn sometimes, and I know I keep them guessing when things aren’t quite right with me, but they usually figure it out. One day I hope to be able to communicate YES and NO in a very clear way so that they always know what I want and what I feel.
Thanks, again, for checking in on me! Love to you all and God’s Blessings!!!
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