January 23, 1999 to January 23, 2000...I am a major big boy now
and my nurses. I also got lots of cards! I was so excited that I wouldn't take a nap!
didn't bother me. Daddy put a new one back in pretty easily. I ended up getting to watch TV longer while they fussed with my belly, instead of having to go up for my nap!
coming. My legs are getting so long that they had reached the end of the old bed. Now I have plenty of room to grow. Mama can get me in a whole lot easier, too; she doesn't have to fold me in half to get me in! I'll show you a picture of my new bed soon. You can see me in my old one if you visit
me. Of course, Mommy had the video camera out, and she took some regular pictures, too. I can't wait until I can do it again!
On March 22, I was rushed to the hospital again because I couldn't breathe. Thank God Daddy was home! He was able to get air into me all the way to the hospital! Then they had to put a tube down my throat to help me. It was very hard for them to get it in. The next day, in the PICU, my tube fell out by mistake. What a mess! Mom and Dad decided right then to get me an operation called a tracheotomy. They did it on March 25th. Now I have a different machine to help me breathe. It's hooked up to a hole in my neck. I take my own breaths and the machine helps me expand my lungs all the way. Now I don't need to use oxygen anymore! There's more to tell, but that is the gist of it. We spent 10 days in the PICU but now we're home! We'll tell you more as soon as we get more settled.
It is very bright outside, even with my sunglasses! I hope I get used to it soon!
my nurse, Sue. I was in my stroller with my ventilator on. I had a hat on to shield my eyes. After a while I was brave enough to open my eyes and enjoy myself. The little (8-year-old) girl was outside and she came over to see me. I love her blonde hair. I was fascinated when she played with her baseball and bat. I am also fascinated by the birds, butterflies, and trees. I get excited hearing all the outside noises and smelling the outside smells.
than my Negative Pressure Vent or Bipap, but it does feel good to me. I can now take nice, full breaths. When I'm on the vent I don't need oxygen anymore. There certainly is a lot of new equipment to get used to.
over my trach. I get humidified oxygen through it. Doing this, I practice being off my vent. My doctors say this is good for me. I usually do great, but sometimes I just don't want to deal with it. 8/16/99 I have been doing great with my mist collar. I use it when I take my nap in the afternoon. That's how relaxed I am with it-most of the time. My respirations are usually a bit higher, but I can breathe pretty evenly on it.
my trach with an oxygen mask fitting over it. I'm not crazy about it usually, but Mom wants me to keep trying. When I get used to it we can go outside without my whole vent set up. Yeah! 8/16/99 Some days I can be on my "nose" for several hours-some days only a couple of minutes. I've got Mom and my nurses stumped on this one.
do stuff in the garden, and Dad mows the lawn, and Mom waters her flowers. I like to help water the marigolds that I planted from seeds all by myself (with the help of my teacher, Jennifer).
the first time since the fall of '97 that I went anywhere for fun. Two nurses came over from the hospital who know a lot about car seats. They found a convertible infant/toddler car seat that can recline enough that I'm comfortable in it. I sat backwards with my nurse, Sue, on one side, and Mom on the other. Dad was way up front driving. Mom took some video of me. I stared out the window! We drove up to Lake Champlain and parked for a bit. I could smell the fresh lake water and the cool breeze. It was heavenly!
is trying to fix one of my bubble blowers so that I can use it with my switch.
She doesn't live too far away. I remember I used to like going there when I was little. She has two big, hairy cats and a great ceiling fan that I loved to watch. Maybe soon, right, Dad??
and best of all, I have been healthy!
camp on Lake Champlain. I've been there many times this summer. I ride in my car seat like a big boy! I also have a special harness that keeps me safe when I am laying down on the seat. Sometimes it's hard for me to sit up for long periods of time so I use the harness.
blast! My nurses came, and everything! I stayed up until after midnight because I was so excited!
Grandma and Grandpa O'Neill came up, too. Aunt Chris made me a cake. I also got great presents. It was a fun, fun, night.
I sit up in my throne (bath chair) and listen to music. My favorite CDs are: Silly Songs, "Theme From Free Willy," and Kenny Rogers "She Rides Wild Horses." I make humming noises and smile a lot when I have my music!
I love for Caitlin to give me biiiggg hugs. Joey lets me wear his special Nike and NY Yankee baseball caps.
24 hours it was pretty yucky, but after that it was more manageable. I did go to the hospital for a chest x-ray. They gave me antibiotics that helped a lot. I kept happy the whole time I was sick!
warm and beautiful out. Nurse Elizabeth and Mom brought me out in my wheelchair. They pushed me up and down the driveway and all around the backyard, too! What fun!
When she works at night, she puts up the decorations so I am surprised when I wake up in the morning. I still have my pumpkin lights up from Halloween. I love them so much. Mom tried to find turkey lights but she couldn't find them anywhere, so they kept up the pumpkin ones for me. I love to look at them and hold onto them while I'm in my bed getting ready for my nap or nighttime.
"Happy New Year is coming soon." I really didn't remember it from last year, but it sounded like fun. It was a normal day that day. I took a nap. Mom let me sleep until 6PM. Then we went downstairs and watched TV. We saw lots of happy events and lots of sad events that had happened in '99. It was fun watching New Years in all the other countries. I couldn't believe it when Mom and Dad let me stay up way past my bedtime. I wasn't sleepy at all. Mom, Dad, Aunt Chris and our nurse were struggling to stay awake, but not me! At midnight we watched the ball drop in Times Square. I got to taste some gingerale. Everyone went to bed soon after that. The next day I was off schedule, but no one cared, because it was a special time.
to Aunt Chris' school on the day before her birthday, to surprise her! Mommy called one of her friends at the school where she works (she works at a middle school teaching 6th graders in special education). We went on the day before her actual birthday because some of her friends weren't going to be there the next day. Daddy came home from work early, we packed the van and off we went! There were some students waiting to greet us and to take some of my stuff to the teacher's room where we were going to be. Mom, Dad and Nurse Elizabeth got me out of my coat, hat, mittens, scarf and hood on a table in the textile arts room! One of the teachers brought in a quilt for me to lay on. Then I got wheeled in my chair to the party room where we got set up and waited. They had it all nicely fixed up with table clothes, and flowers and all. Then, they couldn't find Aunt Chris! Finally, they found her, and one of the teachers brought her down. She was so surprised! I think everyone was teary for a minute. Then we all had fun and people ate and she got her gifts. Lots of teachers came to see me. They had heard so much about me and seen so many pictures that they loved meeting me! I had a wonderful ride home in the van. I "sang" for everyone the whole way home.
Nurse Julie decorated my room last nigh. This morning I was sure surprised! Mommy and Nurse Sue picked me up and helped my play with the balloons that are hanging over my bed. I got a whole bunch of cards in the mail. Mom is making me wait until the day before my birthday to open them.
You are listening to "All I Have To Give" by The Backstreet Boys
NEW!
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Valentine's Day '99 was a lot of fun. I got lots of presents from my family 
