One Year! April 4 through the present:
Well, I woke up happy today. It was early and I knew Mommy was pretending to sleep so I started practicing my short A sounds and kissing. Finally, Mommy and Daddy got up! It's my happy birthday today! Nurse Nancy L was here for me today. I got dressed up in my new khaki pants and a nice white turtleneck. Daddy surprised me with a colorful balloon bouquet. It has Elmo on the mylar balloon! Then it was quiet around here for a while, especially after Casey went to school. I played and played with my gift from Nancy, a musical lightup turtle. It made me laugh. Jennifer was supposed to come today, but Gregory had a fever so she couldn't come. I took a nap, but not a very long one. Then I watched Baby Shakespeare and Baby Van Gogh which were gift from my buddies Skylar and Lily. I really got into them! Then Jan and Tim came from Casey's school to show Mommy a new switch for Casey. I tried it out! I could do it really well. Then Grandma and Grandpa O'Neill came over. I was really happy and silly. Then Casey came home from school. Then there was lots of commotion and I was really tired and at the end of my rope. Mommy put my bipap on but I didn't want it. Then Daddy came home and Grandma and Grandpa left and I had an episode. I was crying and crying. Finally, I calmed down some and I got to go into the other room and lay down in the quiet and nap. Whew! I felt really good when I woke up. I was happy and I knew it was still my birthday. I got to open up presents. I got lots of videos and some spring clothing and some sunglasses and a few little toys. Casey gave me an Elmo's World video. He bought it with his own money! Then we had cake, or should I say Mommy and Daddy and Aunt Chris had cake. First, they brought out a vanilla pudding with a candle on it and sang happy birthday to me and I got to put out the candle with a candle snuffer. Then they brought out a cake that Mommy made and Casey got to put out the candles on it. I love my pudding. I open up wide for it! I really don't get much, just a taste. Mommy ends up eating it. Finally it was time for bed. I went up at 8'oclock and kind of hung out and didn't sleep until 9:15. Mommy had Survivor on so it was a little distracting.
Hi, it's me, Casey. Mommy is going to let me talk every day now. She's trying to figure out a way to merge our websites so that we have a combined journal but still have sections that are all our own. For now, I'll be writing on Colin's page! I had a pretty good day today. I was a little emotional at times, but give me a break, I'm just getting over being sick and I'm not sure if I like Colin getting so much attention, even if it is his birthday! Julie brought me in to the living room when I first got up and I got to see some of Colin's e-cards on the computer. And, I got to see the funiest picture of MJ with her dog Wyatt on her LAP! Mommy and Julie washed my hair while I was in bed today. I love it! So much attention and it feels so good! Then I had to get ready to go to school. I had a good time today at school. I made a picture for Colin with my teacher, Michelle. When I came home, my grandparents were here. I started to cry, because I love school so much, but Grandpa cheered me up and wheeled me into my room and played with me. Then I got to sit with him on the couch. Mommy said I didn't have to take a nap so I sat in my bean bag and watched a Rugrats movie. Aunt Chris came and watched with me. Then it was time for singing and cake! We sang to Colin and he got to put out a candle on some pudding. I didn't try it, I didn't mind. I got to put out the candle on the big cake! I'm quite the expert on it. I got to stay up late with Daddy. Nurse Terry didn't come until 11:00 and Daddy doesn't like to put me to bed early.
April 5: Nurse Eliz came for me today. After our normal morning routine, she gave me a tub bath. It was lots of fun, because I got to play a lot. But, then I pooped in the tub! Ugh. After my nap I tried playing with everyone, but I was so relaxed and tired that I wanted to take a nap. Into my crib I went and I fell asleep within minutes! I slept through most of the time that Casey's computer guy was here. I came down towards the end. I was nervous about him at first, but then he was okay. Eliz left early. Brian came to pick her up and he tried talking to me but I wanted no part of him. Then Casey's nurse Sue left and it was just Mommy, me and Casey. It was kind of nice! Then Daddy came home early and Aunt Chris came. I fell asleep on the couch on bipap for a while. I was up in bed at 8'oclock but didn't fall asleep until after 9:00!
April 5: Well, I had to work a lot today. After morning TV and boom-boom, Mark Woods from the I-Team came to show me some switches and see if I could get set up on the computer. He was here for 3 hours! He had tried to fix my infra-red switch but he couldn't. He made one for me that is a counter-balance one. I tried it last time he was here and it was cool. But this time he had done something different to it so it was too hard for me to activate. So we stuckwith the infra-red one that Jan brought me. It was so easy and so perfect! It was so easy to position on my wheelchair armrest and once it was in place, they didn't even have to adjust it at all, like we had to do with my old switch. I played with a few toys which was fun. Then I got to use the computer!!! First, I tried Mark's. Then I tried mine (I mean Mommy's, Daddy's and mine) I was so excited that I was just clicking and clicking (lifting up my finger really fast) so Mark downloaded a demo program from RJ Cooper that reinforces when I do something correct and when I WAIT instead of just clicking. I did sooo good! No nap for me. Later I just watched my shows, the local news, Jeopardy and Wheel of Fortune. Then I watched big boy shows with Daddy. Shh, don't tell Mommy!
April 6: Happy Birthday, Granma O'Neill! Been kind of a mellow, slow day. I didn't want my bipap on too much last night, but I slept well. Hung out with Casey and Mommy and Daddy in the morning. No nurses at all. Mommy tried to get me to wear my bipap so I did for a while. Then she tried to get me to nap, but no go. Daddy rocked me to sleep but when Mommy put bipap on me I woke up. Ha ha. She insisted on me napping so she brought me upstairs to the bedroom (her room) No go. I wanted to be in my CRIB but she didn't figure that out. So downstairs we went and I promptly fell asleep on Casey's mattress with Daddy (and no bipap). Aunt Chris came and she played with me and watched some of my new videos with me. I was totally absorbed by them!
April 6: It's me, Casey again. The TOOTH FAIRY came! I got $5.00 for one of my bottom teeth! Daddy helped me find it under my pillow this morning. I am going to save it to go to the movies during our vacation the end of April. Mostly I hung out this morning and watched TV. Colin and Daddy sat with me a lot. I love watching the hockey games. Bruins today. This afternoon I got to play on the computer again. Mommy let me play a game that is kind of like "Asteroids" that she used to play when she was little. She downloaded it from RJ Cooper. I also practiced with my Switch Basics program. It's pretty fun, too.
April 7: Wow, a pretty busy day for all of us. We're all tired! I slept well for Mommy last night. I had my bipap off for one hour, but then the rest of the time I had it on and slept great. The time was different today, Mommy says, but it didn't effect me too bad. I watched Baby Van Gogh while Casey slept in. Then, Grandma and Grandpa O'Neill and Aunt Peggy and Tyler came over. We kind of celebrated Grandma's birthday. Hers was yesterday, two days after mine! They all had lots of food and talked and talked. I was soooo good. I was a bit worried at first because of all the people, but then I warmed up and was fine. I had a long rock with Aunt Peggy. She also washed me up after Mommy undid my feeding tube extension while she was feeding me. I got to suck on my Easter ring pop and had some vanilla pudding. It really was fun! I took a nap while rocking with Nurse Sue while everyone was eating and I even went on bipap and stayed asleep! I took a little nap with Daddy after everyone was gone, too. Unfortunately after my perfect day, I had an episode. Poor Mommy got to take a bath. After the bath she came downstairs and I was fussing so she took me to rock me and didn't realize that I had so much spit in my mout. Gunk. I got all choked up. Mommy and Daddy worked on me and suctioned me and bagged me and gave me O2 and I felt better. We went up to bed early. I did NOT want my bipap. I know it was very frustrating for Mommy and Daddy. They'd put it on, take it off, on and off, on and off.
April 7: Mommy let me sleep in until the new 9 o'clock which is the new 10 o'clock. I was very tired! I cried a couple of times last night when Darla was turning me and putting my splints on and off. I just wanted to Sleep. Nurse Sue came and we got ready for our company. I was excited that Cousin Tyler (11) was coming. I wanted to show him how I can play on the computer. I showed him my shooting game. He thought it was cool. He made a really cool tower out of my marble works for me, too. Everyone ate a lot (not me, but I don't care). I like sitting with everyone at the table. I always try to put in my two sense. I watch Tyler a lot while they were eating. I think he is so cool! We had cake and icecream for Grandma. She loved the picture I made her and the space rock I painted for her at school. I went for a walk with Aunt Peggy, Daddy and Grandpa. Aunt Peggy was very proud to push me! She goes fast! Then we watched some TV and hung out. Later, Nurse Darla came at 8'oclock and got me all washed up and ready for bed. I was so tired that I fell asleep early at 10:00. That's early for me!
April 8, 9, 10, 11, 12:
April 13: Quiet day today. I slept well, some on bipap and some off. Got up and did my morning stuff. I was excited to be awake today! Mommy thought it was funny because I was smiling to her even while I was in the midst of being in/ex'd! I was wiggling and winging and all giggles. Nurse Julie was here for a while this morning for Casey. I hung some with Mom and some with Dad. I really enjoyed Roly Poly Olie today. I fell asleep in the morning on Daddy so they tried to sneak me upstairs but I woke up wide awake! I did stay on my bipap for quite a while at least. Then I had a BIG Prune Juice poop. Mommy had a fit because she got it on my sheets and my bipap tubing! Then I got to go downstairs and play. I was very vocal and giggly. I was chewing on my fingers. Then Daddy got boring and fell asleep and I fell asleep on the floor with him.
April 8: Our OT, Lori, came for us today. She brought her daughter, Maddie, who will be 3 soon. She is so cute! They brought balloons for all of us to celebrate Colin's birthday. We each got a mylar one and a regular helium one. They also brought lolipops for us to taste. I liked the lolipop, but it was big and hard to get into my mouth. Not as easy as my Dum Dum ones.
April 9: I didn't get to go to school today. Today we went to see Dr. Aaronson. He is our Orthopedist. Daddy stayed home from work so we could all go together. Nurse Sue was here for me. We got all packed up and left, but we ended up being a bit late, but not too bad. I rode down in my chair. He looked at Colin first. I liked being in the room and seeing the doctor and his student and Paul. Our regular PT, Pam, couldn't be there but Paul was. I had him for a PT a long time ago when Pam was on maternity leave. Then he saw me. Mommy asked him lots of questions and he asked lots of questions, too. He said my curve went from 66 degrees in September to 83 degrees when we had the x-ray taken in March. That's not good. Then he had Sue put me on my belly with my legs dangling down off the therapy table and he looked at my back that way. He move me around and said it looked like it corrects to about 40 or 50 degrees when he pushes me in place. So maybe we will try bracing instead of the dreaded surgery. He is very interested in hearing what we find out when we go to Dr Bach's conference and get a consultation there. It was sooo hot in that room! We all had red cheeks by the time we got out of there. We didn't have to wear our coats! We took the long ws home. We stopped at Nurse Darla's house, but she wasn't there. She was probably on the way to our house as she is my nurse at 3PM!
April 10: Another quiet day.
April 11: School today! Nurse Julie and I picked out some nice khaki pants and my jean shirt to wear today. I watched my morning TV until it was time to get up and go to school. I love the bus! Sharon and Lisa were excited to see me. They miss me when I have to go to appointments and miss school. I swang with Harley today. I did lots of stuff. I had a lolipop for snack. Teacher Michelle was sick today so it was kind of crazy today. After school Mommy said I didn't have to take a nap because we all have to sleep together in my room tonight (no nurse) so she wanted me to go to sleep early! I went outside with Julie and we swang outside on Mommy's swing. She loves holding me and swinging. Well, she was half holding me as I was laying down. It was nice out! Mommy thought I was cold, but I was fine. Then we came in and I played on the computer for a while. INDEPENDENT me! Then Julie got me in my pajamas and we watched the news and Jeopardy and Wheel. Around 8 o'clock we all moved into my room because Colin had to start his feeding and Mommy had to try to get him to sleep! Daddy tolerated us watching Survivor. The lady from Burlington is still in it! She is a tough nut! Colin fell asleep, and then Mommy did. I watched some more TV with Daddy and then he turned it off. It is kind of cool having everyone sleep in my room at night. I really was tired and ready for sleep. Zzzz.
April 12: Quiet morning. Normal stuff. Then Teacher Jennifer came around noon and she watched me play on my computer. She was very excited about my new switch! She made me play lots of different games. She called Laureate to see if they had anything more challenging for me to try. We are determined to find some stuff that will motivate me to learn how to scan and how to use my computer for communicating. Nurse Sue was here until 3PM. Daddy came home then to help. I tried to take a nap, but rested instead. Finally Mommy let me watch Rosie from my bed for a while. Aunt Chris came. Then everyone hung out in my room for the evening. Daddy stayed up with me, as usual, until Nurse Nancy H. came at 10:30PM. I didn't fall asleep until after 11PM!
April 13: Julie came for me today. I got woken up at 9:00. I was happy! Julie hung me from the side of my bed on my belly and let my legs dangle. I could wiggle them a little bit! I wore the Spiderman T-shirt that Julie got me from her trip to Universal Studios. I wore my blue jeans and I looked cool! I got to watch some TV that I liked. Then I got up in my chair and played on the computer. I played Battle of the Gods and Switch Basics and Some of the Laureate Creature games. I did really well. I LOVE being independent! Then Julie left. I watched some car stuff on TV like engines and fixing them and test driving and stuff. Daddy found me some monster truck stuff, too. Then, Daddy and Colin fell asleep down on the floor near me. I was content just watching my tube!
Casey: April 14: Colin and I took a bath together this morning. Colin sure takes up a lot of room lately! He is getting so big! Nurse Sue brought me a movie to watch today. I forget what it was called, but it was funny. It was about a monkey playing hockey. I loved it! Grandma and Grandpa came over this afternoon. I showed Grandpa how I can play different games on the computer. We had fun together. It got so nice in the evening that Nurse Julie brought me outside and we hung out. She put me on Daddy's Harley and everyone came out to see how cool I looked on it! Later we watched TV and hung out.
Colin: April 14: Mommy and I slept really well last night! It was my best sleep in weeks! I still had gas, but Mommy would move me around so it would release before it got me hurting too badly. I was on bipap all night except for half an hour! That is soooo good Mommy says. I took a bath with Casey this morning. I liked it, but it was a short one because there isn't a whole lot of room for the two of us anymore. I guess we will be taking separate baths for now on. Mommy brought me upstairs for a nap. I wouldn't sleep for her so Daddy came and got me to fall asleep! Grandma and Grandpa came over. They looked at me and I cried! Then I got over it and I played with Grandma. We played peek-a-boo and played with some little toys. I fell asleep exactly at 8PM!
Colin: April 15: Well, I slept kind of not so good last night. Lots of gas. Mommy would roll me and move me and it would just burst out of me. I woke a couple of times for a minute or two. But, the good news is that I fell asleep at 8PM (early) and I kept my bipap on all night except for an hour and a half! At 8AM, Casey's Nurse Sue came for me for half a day. She kind of knows me pretty well so it was good. Mommy did my in/exing and got the bipap set up in my crib. Then Mommy left me and went shopping! I played with Casey and Nurse Sue and Nurse Julie. And then I rocked with Sue and she tried to get me sleepy. She brought me up and I tried my crib but I wasn't ready. Then, she was feeding me and my tube came out of the button and made a mess. Mommy came home during the cleaning up! Poor Mommy had a headache and I was kind of fussy so Nurse Julie came and patted me to sleep. I slept good! When I got up Mommy felt better. She played and played with me. She bought me Elmocize and she and I exercised together. We also watched Sing Yourself Silly (Sesame Street). and then I helped her make my formula. Then Daddy came home and a big dump truck came and Daddy made me go out and watch it. I was not impressed. It spread some surepack gravel in our driveway-Big Deal! I fell asleep on Casey way too early. I woke up when it was time for bed and of course I wasn't ready to sleep then! I had my bipap on for a while but I fussed enough for Mommy to take it off. She put it on me at 10PM and I slept with it all night long, can you believe it?
Casey: April 15: I woke up at 9:00 all on my own! I slept really well. Mommy went out this morning and I was with Nurse Julie. She let me watch some TV but we did other stuff, too. I played on my computer some and I played Nutty Elephant, too. I layed down in my room, and Colin lay with me and Julie read us two books. Then Mommy took Colin away and I was supposed to nap, but I never did. I got to come out and watch Rosie. Then, Daddy came home and told me that a big truck was coming. Mommy took me outside with out my vent and we sat in a chair and watched the guy spread some gravel in the driveway. Big noise, and big dust, but nothing too impressive.
Colin: April 16: Well, the best part of today was NOT getting my stroller! I didn't like Tom and Pam being here that much. I was okay, but really not in the mood. And, then it turned out that something went wrong and we got the wrong stroller base so it has to be sent back. I did get in it and got pretty well situated. It was something about needing a vent tray so they used a bigger base that we don't want, etc. But, I think I will like it when it comes for real. Hopefully it will be here in two weeks. Later on I swang out on "MY" swing with Daddy. I could stay there all night!
Casey: April 16: School today! It was so warm that I got to wear shorts! I got to swing outside with everyone today. I like that. Lots of kids come over and talk to mean and ask Nurse Sue questions. I don't mind. I played Go Fish with Harley. I used my switch to say "go fish." Harley thought it was funny because I kept saying "go fish, go fish, go fish" even when I wasn't supposed to. Then, after I got off the bus, I was sad, so Nurse Darla, Mommy, Colin and I went out and swang on the swing. I was in my glory! Nice day!
Colin: April 17: I had not the most restfull night. Don't know why. I was on and off bipap again. Mommy was frustrated. She'd be sleeping really well and I'd wake her up from her dream crying and fussing. Nurse Nancy L came for me today. We went out in the driveway and I watched Mommy and Nancy rake up a bit. Then it was time for my nap. I cried myself to sleep but then slept great for a long time! It was sooooo hot today! I didn't really like that. I met Casey's teacher for next year. She seems nice. I liked listening to her read books to Casey. Then I played and watched videos. It got so hot this afternoon that I was grumpy. I needed to be entertained a lot. Finally, Daddy came home and brought me out on the swing, which is just what I wanted!
Casey: April 17: After a few of my morning shows I got to take a walk in the neighborhood with Nurse Sue. I had my shorts on and my muscle shirt. I had lots of sun screen on because it was hot and the sun was beating down on us! After that I hung out on the couch in my room for a bit to get rested up for my new teacher. My Kindergarten teacher came to visit us today! Her name is Nora, but I think we will call her Mrs. Murtaugh. She watched me play independently on my computer. We talked about things that she likes to do in her classroom and all the cool stuff we'll do next year. I'm ready for kindergarten NOW! Harley will be in my class next year, so she will be my buddy. Then I showed her my room and some of my pictures and stuff. Then she read me some books. Colin came down to see her after his nap. Then I took a nap. It was so hot I was worn out. Then I watched Rosie with Mommy and my regular evening shows.
none here yet!