January 19, 2000: Poor Mommy! She has a lot of catching up to do on here! We've had problems with our Internet Service, so she doesn't get to do a lot on the computer before she gets kicked off. Anyway, things have been going well. I did have a "poopy" bug but I am over it now. Mom seems to be having a bit of a hard time with my attitude lately. I have been whining a bit and very demanding. I can't help it, I am almost 4!
December 7, 2000: I am a real Preschooler! I went to my first day of school! I've been getting my school at home, ever since I was little, but TODAY I went to the classroom! There are 13 other kids besides me. My teacher gave me pictures of the kids so I could learn their names before I actually went to the class. The teacher told the class all about me so they would know about my wheelchair and my suction machine and my ventilator. First, we all sat in "circle" and they sang a welcome song to me. Then we had lots of time to play. I chose to play Duplo blocks with some of the guys. I also made a snowflake picture with lots of glue and glitter. I played with cinnamon playdough, too. My new friend, Logan, used cookie cutters and made me lots of Christmas shapes. I had my picture taken by the Christams tree. I listened to a book on headphones. Whew! Oh, Mommy and Daddy were there, and Nurse Elizabeth. Next week I will take a trial run on the school bus and then maybe I will start riding the bus! And, since Daddy was off work, and my stuff was all in the van, we dropped Elizabeth off, and picked up my next nurse, Julie, and then we went and got our Christmas tree! It was soooo cold that Mommy and Daddy went and picked out the tree and chopped it down. Julie and I read books in the nice, warm van. What a great day!
December 1, 2000: I went to a Christmas play last evening! It was called "The Toys that Saved Christmas." The students at the University of Vermont (very close by) put on the show every year. The Friday showing is traditionally for kids with special needs. Mom, Dad and Aunt Chris and I went. It was very cold out! We found a good parking spot, luckily. I saw tons of kids inside! We took the elevator up to the balcony. I sat in my wheelchair behind the center isle with Mom and Dad on either side of me and Aunt Chris next to Daddy. It is a small theatre so we could see really well. Believe it or not, I was the only kid that had a wheelchair. There were lots of kids that sat in a special section where they could see the interpreters who signed the whole play. There were all sorts of kids and their families there. It was a good, good play. There was a mean toymaker and a rag doll and a Barbie, and soldiers and a captain, and clowns, and towards the end Santa came!!!!! It was even colder and windy when we went outside, but Mom kept me warm. Dad took the long way home so we could see some of the holiday lights down by the bay. I couldn't really see, since I was laying down on the seat with my EZ-on Vest, but I loved the ride.
November 28 2000: Nurse Julie did a terrific job decorating my room! I love it! I have beads strung and silver snowflakes strung, and roping and silver angel garland. I have Christmas balls hanging and all sorts of decorations everywhere! Oh, and don't forget my candycane lights hanging on my feeding pole!
Thanksgiving 2000: Click here for our family's Thanksgiving Page.
November 20, 2000: I babysat for Gregory today! Gregory is my teacher's son who is just 5 months old. I've known him since he was born. His sister, Alaina, is one of my best friends. She was at Day Care today so we had Gregory all to ourselves. He is a cute, snuggly, good boy. He sat with me in my wheelchair (Mommy helped) and he snuggled with me on my pillow. We shared toys and then he took a nap. His Mommy came for him later. I would have loved for him to stay and play and snuggle with me!
November 12, 2000: We had a blast yesterday! Mom and Dad and I (no nurse) drove to Grandma and Grandpa O'Neills house and picked them up in my van. Sammy, their big black dog, decided to come, too. We took a nice drive to Underhill to go to a Christmas bazaar at St. Thomas' church. But, I couldn't go in because there was no way to get my chair in. So Grandma and Mommy went in for a while. Daddy put me in my chair and let me watch Franklin on the TV while they were inside! Then, we went to the school next to the one Aunt Chris teaches at for a Christmas craft fair. Wow, I've never been to anything like that before! So many people and so much noise! It was great!! I got a snowman painted on my face and Daddy bought me a rose quartz rock to hold. Then, we dropped off Grandma and Grandpa and on the way home we stopped at Our Lady of Grace's church. Nurse Julie's Mom saw us and showed us how to come in using the elevator! We shopped and chatted and a nice lady gave me a blue hat that she had knitted. Then we went home and I took a nap--so did Mommy and Daddy!
November 1, 2000: Major gap in time. I've been doing great! We've been busy doing lots of things. I've been on vacation to Long Island, had MJ and her family visit us in Vermont. Been to Ben & Jerry's and the Vermont Teddy Bear Factory. I've taken lots of drives and walks and visited lots of friends and had lots of friends visit me. I've been learning a lot with my teachers. I've started using a computer with my infra-red switch. Mom will write more details soon, hopefully!
For Halloween this year I was a KING! King Casey is one of my nicknames, so it was very fitting that I dress the part for Halloween. Nurse Darla had made a beautiful purple velvet cape and gold shirt for her daughter one year and they let me borrow it for my costume! The shirt was like a tunic for me. It came down to my knees. I had leggings on and black slippers and a fancy gold belt. Mom made me a scepter and I had a couple of bags of chocolate gold coins. And, I had a jewel-studded crown. I sat in my chair and had the cape wrapped around me. I felt very royal. Mom, Dad, Nurse Elizabeth and I went to Aunt Chris' house to hand out candy. Not a lot of people come to our house, as there are only 3 houses on our street. We had a very good time. Then I lay down and relaxed and watched the video of Charlie Brown's Great Pumpkin. We got home at 9:30 PM and I was asleep by 10:15!
Oh, pumpkin carving! I almost forgot to tell you about it. We grew lots of pumpkins in our garden this year. Mom, Dad and I carved 5 of them! We made a witch, bats and then some with silly faces and some with scary faces. I loved watching and helping-except for getting the pumpkin guts out. I did not like that part!
June 2: I've been getting outside a lot. Sometimes I even get to go out 2 times in one day! I LOVE to be pushed in my wheelchair all around our yard. Some parts are very bumpy and I think that's the best! I also like to go down by the pond. Mom lets me feel the long grasses and ferns. We look for frogs, too. We haven't seen any yet, but I'm sure we will! The worst thing about going outside is the mosquitoes. They find me tasty. I have quite a collection of bites on my arms and legs.
Last weekend I went to my first, non-family BIRTHDAY PARTY! Sammy, the little girl next door had her 8th birthday. It was supposed to be mostly outside, but it was kind of cool and overcast so we ended up going inside. Dad and Bob and Mark lifted me up their big front steps while I was in my chair! I got to pet Sammy's birthday baby bunnies. Odie and Jordan, their two dogs visited me, too. They gave me a pretty lei to put around my neck. The theme was a Hawaiian Luau. The girls had on grass skirts and there were lots of decorations. I met a lot of new friends!
April 24: Poor Mom! We've been so busy and I've been doing so well, there is so much to talk about, but she's hardly had time to check her mail on the computer-let alone writing updates...Let me see. For information on how our fundraiser went, go to the Fundraising Page. Mom will write all about it on there. Oh, one of the best things that happened lately is that I (we) got to meet MJ and Tim Purk and Brenda Hanson. MJ (Margaret) is 12 and she has SMA, too. She is a lot stronger than me, but we have a lot of things in common. It was exciting for all of us. Look for our photos on my 4th Year Photos Page. Tim is her Dad. He is really cool. He had fun with us. He knows how much MJ loves me, so he said it was okay for them to come up to Vermont from New York to spend the weekend. Brenda is MJ's friend and caregiver. She and MJ are very close. They know each other like a book! Mom and Brenda talk all the time on the computer.
Meeting MJ, Brenda and Tim-They drove up from NY on the Friday before the fundraiser. Daddy drove to their hotel so that they could follow him to our house. I loved meeting them! MJ has a big motorized wheelchair. It was a bit tricky to get her into the house because we have a couple of steps, but they made it in! We talked and had fun. MJ gave me a big bag of goodies; beanies, books and videos! We watched the video that Mommy made of ME for the fundraiser. It has some video then pictures then more video. There is music on it, too. It has Savage Garden "I Knew I Loved You", Michael Jackson's "Will You Be There" (theme from Free Willy), and The Backstreet Boys "I'd Do Anything for You." Then they went to their hotel.
The next morning we met and drove to the Vermont Teddy Bear Factory. This was a pretty big event for me. I don't go to a lot of places since I have a lot of equipment to bring with me everywhere and because I am still getting used to my wheelchair. I loved the tour! Actually, I loved it best when we wheeled around the Factory and got to see people and interesting things. Then we all drove to a nice overlook near Aunt Chris' house. You can see Lake Champlain and New York state. We sat and talked and MJ and I wheeled around in our chairs. It was beautiful out! No one had a jacket on. It was sunny and breezy. We had a blast. Then we went home and MJ, Brenda and Tim went to their hotel to rest. Later they came up for supper. Aunt Chris had a cake specially made that had my picture and MJ's picture on it. It said "friends."
The next day was the big fundraiser day. Guess what we woke up to? A huge snowstorm! I'm not kidding. It was April 8th and we were getting the biggest snowstorm of the season. Anyway, everything worked out. MJ, Brenda and Tim were planning on leaving partway thru the fundraiser, but because of the storm, they stayed another night! Click here for more on the fundraiser.
March 27: We had some really nice weather and
I was able to go outside on the back porch. The ground is still too soft and muddy
for me to go on the lawn yet. I got a little color in my face. Mom and the
nurses are very careful not to cook me too much! Oh, I got the new 'NSync CD. I
love it!
March 16: Mom's been slow on her updates lately. Things have been busy around here. Not too crazy but busy enough. I've been feeling really good and have been really happy. I made the front page of our local (very small) paper, The Milton Independent.! A really nice lady talked to Mom on the phone and then she came and visited on Saturday. She wrote a story about me and me having SMA and the fundraiser that we're doing. The article just came out yesterday. Lots of people have seen it and learned about me! Click here to see the article about me.
February 25: Poor Casey got two shots
today for RSV. (his 4th month) He cried! But he got over it quickly. RSV is a very
serious virus that can cause major complications in kids with respiratory problems.
Normally when someone has the RSV virus it shows up as a cold and they can get over it on
their own. That's one of the scary things about RSV, if you're around a small child
with cold symptoms, they could be carrying this virus. He also has tons of wax
in his ears. The doc used little blue plastic paddles and scooped some out. We have to put
peroxide drops in his ears for a week. He may have to get ear tubes for his fluid. We've
been thinking about it but have put it off. It really may feel better to him and help him
hear better so we'll probably do it. We're also have a call into the nutritionist as
Casey's weight has hit a plateau at 30 pounds. He looks good, but the doc thinks he
should be gaining a bit. We don't want to have to worry about nutritional troubles
on top of everything else! Casey is in the 90th percentile for height at 40 1/2
inches, but is off the chart for weight.
February 22: Casey now has knee
splints. His knees don't straighten out all the way right now. We've been
putting him on his belly and trying to stretch his hips and knees, but his PT felt knee
splints might help. She used that white material that you melt in warm water and
mold it in place. Then she put some straps and Velcro in three places. We'll
use them throughout the day and sometimes at night. They're great when he's on his
belly as they really keep his legs straight. Our goal is to try out a stander this
summer when he has more flexibility in his knees. We used one before, but we think there
was too much stress on his knees as they were quite bent in the stander and it probably
wasn't doing him any good anyway.
February 17: Mommy wasn't feeling great
today. Her friend, Tina, came over and brought her lunch. Then she helped
Mommy do some cleaning. Actually, Mommy was in the other room doing stuff because
Tina, Elizabeth and I had the Backstreet Boys on the CD player really loud!
In-between the cleaning they would dance with me! I had a really, really, fun time!
February 17: Oh, I almost forgot to
tell you! Me, Mommy and Elizabeth babysat for Alaina (she's 19 months old) one
morning! They came really early (for me anyway) and I opened my eyes as soon as I
heard them coming up the stairs. It was pretty cool to have her with us. While
I had to get washed up and dressed, (sigh!) she got to play with my toys and Mommy.
That's okay though. The funniest part was all of us going down the stairs!
Mommy went down first with the oxygen tank in her right hand and Alaina's in her left
hand. Elizabeth and I went after them with Eliz carrying me. It was slow going
but we made it! Then we watched TV and played and had fun. Alaina is very
entertaining and very gentle with me!
Valentine's Day was a very nice day! Mom
has been putting my cards up in the living room and I have tons! I wore a red shirt
and gray sweatpants with red on the pockets. Nurse Elizabeth "fixed" my
hair with some stuff Mom got me called "No More Bed Head" spray. We hung
out for a while and watched TV. Then I got to sit in my wheelchair while Mom took
pictures and video. (Thrill!). Aunt Chris didn't come over because there was a
pretty bad snowstorm going on. Mom even told the evening nurse not to come because
Daddy would be home and we didn't want to worry about her driving in the storm. It
was NICE to have Mommy and Daddy all to myself! we watched tons of new Rugrats
episodes and we watched Sponge Bob Square Pants. Daddy and I like that one.
Mommy and Daddy gave me a dog that winds up and moves, and a new car for my Hot Wheels
race track. I gave Mommy a card. She said it was the best Valentine's Day
present EVER!
February 10: What an exciting week I've
had! Today I had my photograph professionally taken to be in a catalogue. The
company is called Laureate Learning Systems,
Inc. They are a locally based company that creates software for kids with
special needs. They have all sorts of stuff from matching games to stories to
categorizing games, all made especially for kids with different disabilities. Four
people came to my house for my photo shoot. We set up in my playroom downstairs.
They had umbrellas, lights, cameras, all sorts of stuff. Best of all they
brought a laptop computer with some of their fun programs on it. I sat in my
wheelchair with my tray on it. The laptop fit so well. I could see the
programs really well. I liked "Creature Cartoons." Everyone thought
I was very handsome and said I did a great job. They gave Mom a couple of Polaroid's
and promised her some prints as soon as they get them done. All too soon it was
over. I was pretty worked up when they all left.
February 10: I went to the
movies yesterday for the 1st time ever! (Click here to see the
articles about me. Things worked out very smoothly. We made it up to the
theater in plenty of time. Dad found a good handicapped spot to park the van.
Jo, our social-worker student, met us and opened a side door so we could get in really
easy with me in my wheel chair. We found a good spot in the back row. It's a
really small theater so it was perfect for me. Elizabeth and Mommy went to the
counter and got drinks and popcorn and candy, not for me! I hung out with Daddy and
watched everyone. I met DR. Holmes, who is a colleague of my doctor. He is the
main guy of the Whatever It Takes program that Jo is a part of. The goal of the
program is to get to know families with kids with different needs and find ways to help
them get the things they need. She and my nurse, Sue, talked about how nice it would
be for me to go to a movie. She talked to the people in the program and they worked
really hard to make it happen. We think about 80 people ended up going to the
movie. That includes the special needs kids, their siblings and a mom, dad or
caregiver. So anyway, it was fun! I saw the movie on the biggest screen I'd
ever seen. The sound was really loud, and the lights were dim. It was an
exciting experience! I also enjoyed my ride in the van back and forth. It was
nighttime when we drove home so it was even cooler. Mom told me that I was sooo
tired I fell asleep downstairs watching Rugrats! Can you believe I missed my
Rugrats?
February 2: Mom just had a meeting with
Michelle, Jennifer, and two people from the I-Team. The I-Team is from the
University of Vermont and they have a lot of knowledge to help kids in all different kinds
of situations. With Casey, we are focusing on communication and technology.
They came up with some great ideas for us. The tech guru is going to adapt a
computer mouse so Casey will be able to use the computer somewhat. He won't be able
to scroll the mouse, but will be able to turn pages on books, click on pictures and
eventually use a scanning program to make choices. Lots to work on!
February 2: Well, we certainly did get
snow! We've had 2 big storms so far. Mom bought me a toboggan! The
toboggan is so big that I fit on it with my vent and my suction machine. I laid down
on a pillow and was all snuggly in my sweat suit, snow pants, winter coat, hat, hood and
mittens with a blanket on top! I went outside on Saturday and Sunday and got pulled
all around our yard. What a fun time! I used my voice and yelled to let
everyone know I was happy. It was the weekend with lots of snow but warm enough to
enjoy being outside.
January 25: We're expecting some snow
finally. Can't wait! Casey is wearing his new Toy Story 2 outfit from his NY
cousins. He looks awfully handsome!
January 24: Wow, were still recovering
from the big party yesterday! We had such a nice day. Thank you to everyone
who came to the bash. It was so good to see you all! Thank you, too, to
everyone who sent Casey snail mail and email cards, gifts and called. It was quite a
successful day! Casey received many thoughtful gifts and some donations were made
to Families of Spinal Muscular Atrophy in honor of Casey's 3rd birthday. THANK
YOU! I haven't counted all the people that came to Casey's open house yesterday, but
at one point there were 18! Casey enjoyed seeing his Vermont cousins and his
buddies Alaina, Joey, Ethan, Tommy, Samantha and Ashley. Alaina, who's 19 months,
got to go for a ride with Casey in his chair. (Brave Alaina's Mommy and Brave Me!)
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