Hey Hey Hey everybody. Sorry it has been so long but things have been a little crazy around here because mommy and daddy still have no nurse yet! It is just one big mess! One person says one thing and another person says another thing. Well, mommy had a few minutes so she figured she'd grab me and catch you all up on what's been going on. I have been doing pretty well. I've been enjoying my walker and am getting pretty good at moving it backwards all by myself. I also got mommy good again the other day when after she gave me my bath she had to give me a suppository and I pooped and she changed my diaper and by the time she got the other one on me I was pooping again. Good thing she got that diaper on me. That'll teach her to wait next time until I'm really done. :-) I go back to Hopkins to see my ENT in December so that they can change my trache to a little bit longer one. Also, mommy and daddy and grandma have discovered maybe a way to help me sleep better. Grandma had this little red nightlight hung on the wall in the spare bedroom at her house and that's where she puts me when she watches me and I just did so well with the light in there and even when I would stir and wake up I would put myself right back to sleep or lay there calmly. So, guess what...Sunday night mommy fixed up my bedroom and put me on the twin bed and put lots of pillows on the side so I wouldn't roll off and daddy has a red lava lamp so she put that in there and guess what...I really like it a lot. So mommy hooked up the baby monitors and I was good to go. Sunday night mommy actually got to sleep in her own bed next to daddy until about 3:45am. Now, last night wasn't as long but that's just 'cause I was really fussy and unsettled and needed mommy to hold me but we got it all worked out too and mommy got a little bit of rest last night too. Although, mommy has to take care of daddy today too because he stayed home from work today not feeling so good. He has a really bad cold and just doesn't feel good. Poor daddy. :-( Well, I'll let mommy go get something to eat so talk to you all later.
Hi, my name is David Joseph Chiappetta and I was born on July 27, 2007. I was born with something called holoprosencephaly and it means that my brain was not divided and I don't really have much of a brain. I do have a brain stem which controls my heart and lungs so that's good. My hypothalamus doesn't work either though so I can get either really hot or really cold very easily and quickly. Mom and Dad have to be my thermometer for me though which keeps them pretty busy at times. I also have a feeding tube in my stomach so I can eat since I can't swallow and I have a trache so I can breathe since I only have one nostril and it's blocked. Mom and dad have to suction me out too since I get mucuous buildup and have acid reflux. Sometimes I can keep them busy with that too. I also have Diabetes Insipidus which is a water issue and so I have to be given a certain amount of water with my medicines. If my sodium level is too high then that will cause me to have more seizures as well as if my temperature gets too high. I already have a seizure condition because of my lack of brain so some things can make it more complicated like high temperature and high sodium. See, my normal temperature range is 94 degrees to 97 degrees. Anything above that can cause me to have more seizures. See, I told you I keep my parents busy. :-) The doctors said though that I may not make it to birth and if I did I would only live a month or so. They also said that I will not be able to talk or walk or crawl or any of those normal baby things. Well, I'm here to tell you that I am4 years old now and I am learning to pick my head up when on my tummy! I'm also learning to put some weight on my legs and I laugh and smile. Cool huh? I just wanted to add that although you see mom and dad in the description above...it has just been mommy and me for a while now since daddy passed away in January of 2010.
Tuesday, September 23, 2008
Sunday, September 14, 2008
Hey Hey Hey Everybody. Guess what? I just taught mommy and daddy a very important lesson today! WHEN IT'S HOT NEVER LEAVE HOME WITHOUT MY COOLING VEST!! Here's how it went down. We got home from church today and mommy and daddy decided that they needed to go run a few errands and so they decided to take me with them. Not a bad idea because I like going places with mommy and daddy. Well, mommy changed my clothes from church and put a cut off onsie on me and noticed I was starting to get very hot because it was so humid outside and hot in the house too. I was starting to get fussy like I do when I get hot and having some more seizures but mommy and daddy thought that the air conditioner in the van and in the store would help cool me off. Well, I got news for them...It didn't. :-) When we were in the store I started getting fussier and louder with my squealing and I was just not happy. So, mommy and daddy quickly finished up what they needed to do and then they had to stop at Food Lion and daddy had to run in quickly and get me a bag of frozen corn. Yeah, you heard me...frozen corn. He put that on me and that helped a little bit until we got home and then it was in the bathtub and then on the bed in mommy and daddy's room where they were trying to cool the room off with their little air conditioner and the fan and that still wasn't the greatest so grandma called and guess what...mommy had to take me over to grandma's since it was very cool in her house and it still took me a little bit but with some Tylenol and laying on the nice cool floor at grandma's I soon cooled off and mommy and daddy came back and got me around 6:00pm this evening. See, I told you that once I get hot that's it...it usually takes a while to get my temperature down depending on how hot I was in the first place. That's why mommy and daddy try their hardest not to let me get so hot. Oh well...I bet next time they take the cooling vest when it's hot out. :-) Well, it's medicine time and daddy's getting that ready so I will go so he can give me my medicines. Talk to everyone later.
Wednesday, September 10, 2008
The first picture is the nice picture of me sitting up in my seat like a good little boy while I was eating. It helps me when I sit up and am eating. The other pictures are the pictures of me squirming my way all around in my car seat not wanting to sit up and be in there. :-) Mommy had to sit me back up every couple of seconds and then finally she gave in a just let me be and let me tell you I was quite content.
Tuesday, September 9, 2008
Hi There everyone. Mommy is up with me tonight so we figured we would write. I think I have caught up on my sleep and now I'm in my pattern of not sleeping much again. Go figure. I only slept a few hours today. I was up at 1:30AM yesterday morning and took about an hour nap around 8:30am this morning and had a short 3 hour nap from about 7:00pm to 10:00pm tonight and since then I've been going strong so mommy is trying to stay awake and so I suggested we get on the blog and write something. Grandma took me and mommy a ride in the golf cart this evening and boy was that ever fun. I really really like riding in grandma's golf cart and it really does calm me down and I just have so much fun laughing and smiling. Believe it or not after our golf cart ride is when we came back inside and it didn't take me very long before I was asleep. Maybe we'll have to start taking golf cart rides at like 2:00 and 3:00 in the morning and maybe that will help put me to sleep. :-) Well, I'm getting a little restless now so mommy needs to put me back down on the floor on my little bed so I will let her do that and I will talk to you all at some other point in time. Just to let everyone know I have an appointment at Johns Hopkins coming up on Sept. 18th with my ENT doctor to check my trache again and make sure it's still the right size that I need and everything. Not a major appointment but nonetheless it means driving to Baltimore. We will let everyone know too when the next appointment is with the reconstructionist for my nose. Mommy still has to call them this month in order to set up an appointment for next April. I'm sure that will be here before we know it. (mom, please put me down so I can play and you can suck me out)! Sorry everyone but I really do gotta go. Catch you all later.
Sunday, September 7, 2008
Yesterday I was in my seat and fell asleep and next thing mommy knew she looked over and this is how I was sitting. I slept like this for a little while and then managed to sit myself back then. Mommy thought for sure I was going to fall out. I have been doing pretty good and have slept pretty decent for mommy and daddy this weekend but still not the greatest. Mommy and daddy do a lot of shift sleeping on the weekends and this weekend we even gave grandma a break and she didn't watch me on Saturday night because mommy and daddy wanted grandma to be able to go to church if she wanted to. I got to go to church this morning with mommy and daddy and grandma. It's been a while since I've been to church and yet mommy still had to stay out in the foyer with me but sometimes that's to be expected. I was kind of juicy today and needed to be suctioned out a few times during service so mommy just decided to stay out in the foyer with me as well as I was really gassy. Well, I just wanted to check in with everyone and say hello and let you know what's been going on. We still have no nurse (surprise surprise) but they are still working on it. So, what can you do. Well, I gotta go now so I can watch the Cowboys with daddy. I hope they win. I got to see some of the Florida Gators play yesterday and they won! Sorry though to all those WV fans who had to watch their team lose. Talk to everyone later.
The other day pumpkin buddied up to me on the couch as to try and "protect" me. They were shooting fireworks off across the way and the next thing mommy and daddy knew pumpkin came over to where I was and put herself right up against me. Aren't we cute?!