I had a lot of fun this weekend seeing my Aunts and Uncles and cousins. We had a lot of fun with pop pop's birthday party. I got to play a little bit with my cousin Danny. He is 2 months old and we weigh about the same too. Danny is my buddy. Both of us really didn't feel good this weekend either so I hope that Danny is feeling a bit better...I am feeling a little better. Grandma is also not feeling well and has a bad cold so needless to say she is not able to hold me much. You can pray for mommy and daddy this week because they don't have a nurse much this week at all. My nurse, Brenda, is away this week and other nurses have to do some sort of training first and who knows when that will be so mommy and daddy have me most of this week. Although, I get to see Nana and Auntie Michele on Thursday so that will be lots of fun. And yes Nana, I am doing back flips waiting for your arrival. I think you will be surprised at how big I am getting. Well, I gotta let mommy go so we can figure out the sleeping or lack of sleeping arrangements. Talk to ya later. Nite Nite.
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.
Monday, April 28, 2008
Thursday, April 24, 2008
Tonight I am a little cranky because I had to have 3 shots today. The nurse should have fun tonight!! :-) I did sleep for a few hours this afternoon though after we came back from the doctors so that's good. I just hope it isn't too bad this time and that I will be good for mommy and daddy. I'm sorry I don't have much to write this evening but I am getting tired and should probably try to get a little bit of sleep at least so I will talk to everyone later. I can't wait to see my aunts and uncles and cousins tomorrow or maybe Saturday if they get in a little later. Bye now.
Wednesday, April 23, 2008
Guess what everyone...I had a pretty good day today. My temperature was really good today. I took a little nap this morning from about 9:00am to 11:00am and then was awake the rest of the day. I rather enjoyed today and got to get outside as well. Mommy took me for a ride on grandma's golf cart. We even picked up grandma and she took mommy and me both for a golf cart ride. It was lots of fun. I really like riding on the golf cart and like the movement and the wind in my face. It usually calms me down and I just enjoy it and take it all in. There's just something about grandma's golf cart. Too bad mommy and daddy didn't have their own but that's ok we'll just borrow grandma's when she's not using it. After my bath this evening I curled up on daddy's tummy and slept for about an hour or so. It's about 9:30pm now and I'm awake and ready to party again. Hold on a second...daddy has to suction me out...Ok, I'm back now. When I first wake up I seem to be the juiciest with lots of suctioning. Again, my day was pretty good and I had a lot of fun today. I go see my pediatrician tomorrow for my 9-month check up and I have to get some shots so pray that I won't be too much of a handful for mommy and daddy. Last time I got 3 shots at a time I wasn't right for a week. Hopefully that won't be the case this time. And, if it does though this too shall pass. Goodnight everyone.
Tuesday, April 22, 2008
Good Evening everyone. I'm sorry I didn't get to write last night but mommy and daddy were very busy with me trying to get me to cool off and settle down. I have been having lots of gas issues and that has been bothering me. I certainly kept mommy busy with all that today! I don't think she sat down once. Since 9:00am I have been cranky and fussy and passing gas. Go figure. All that then made me very hot and mommy had to change my inserts on my cooling vest like 3 times today. It certainly was a fun day with all that and then mommy had to give me 2 baths today but that's because I had myself all worked up and so naturally I threw up. It's such a vicious cycle sometimes. I have been a little better this evening though and haven't gotten too hot. I know mommy is very tired after this long day so I won't keep her on here too long and I am tired myself. Hope everyone is doing well. I get to see my cousins and aunts and uncles this weekend so that should be fun.
Sunday, April 20, 2008
Hi Everyone. Today was kind of a dreary day outside but I had a good time with mommy and daddy today. I was awake this morning for church and poor G-maw McKenzie wasn't able to hold me today. She had a very bad cold so she didn't come near me which is good 'cause I don't want to catch a cold. Mommy needs to start carrying around those little masks for people who have a bit of a cold and want to come near me. I fell asleep half way through service this morning and slept until about 11:00am. Since it was rainy and nasty outside this afternoon mommy and daddy decided to give me my first haircut. Can you believe it? They have wanted to do this for a little while now and so I guess today just presented the perfect opportunity. It was lots of fun though. I look really cool now and I love my new haircut very much. Check out the pictures below and you will see how very cute and cool I look. I'm one cool dude. I got a little hot this evening but mommy is getting good at what point to use my cooling vest so she put it on me for a little while and my temperature was down in no time at all. Have I mentioned lately that I love my vest? :-) Well, I'm about ready to fall asleep so I will get ready for bed and talk to everyone at another time. Have a great evening.
Saturday, April 19, 2008
Well good evening everyone. I hope everyone's weekend is going ok so far. Mine has been pretty good. Friday was a good day for me and today isn't so bad either. Although, I was good all day with my temperature until just an hour or so ago. I started getting really hot within a matter of minutes and so mommy had to get the vest out and she got some pictures of me in it this time so you'll have to check some of the pictures out below of me in my new vest. It really does work great and I am so thankful to have it. It's just a tad bit big but that's ok because see now I can grow into it. I think mommy and daddy need to decorate it up somehow with stickers or something. I think that would be pretty cool...no pun intended. I still have my vest on but am cooling off very nicely. I enjoyed the nice breeze today. Too bad it's supposed to be raining tomorrow. Oh well, I can hang out with mommy and daddy all day inside then. That's perfectly ok with me. Well, mommy and daddy have a few other things to do and it's almost medicine time so I will let mommy go and see you all later. I can't wait to see Nana and Aunt Michele in a few weeks. Later everyone.
Thursday, April 17, 2008
Hi Everyone. This has been a busy month for appointments it seems like. Today I had my appointment with the neurologist and he seems to think I am doing very well. Since I have been on Keppra for my seizure and been weaned off the ativan I have been doing so much better and haven't had as many seizures. I put my cooling vest to good use today since I got a little hot going to see the neurologist. When we got there we went inside and mommy signed me in and then it was put on my vest. I'm sure people were kind of wondering what mommy was doing but it made me feel so much better. It cools me off at just the right amount and not too fast either. So, thank you very much to Debbie Naquin from MSCooling who custom made me my cooling vest since no one really makes infant size cooling vests. If anyone is interested in one or what it does and all or know of someone who might benefit from one you can check out her website at www.mscooling.com. There is lots of neat stuff there even heating vests and blankets. My neurologist was even interested in what the vest was all about and so I gave him the website. I need to find a little cooler of some sort though so that mommy can keep the inserts cold when we go out for long periods of time somewhere. She has a lunch box that when you put it in the freezer it gets really cold and frozen so she has been using that for now and that's what she used when we went down the road today. It works pretty good and it kept the inserts pretty cold but just not sure how it would do for a longer trip like to Johns Hopkins but we will cross that bridge when it comes. Mommy is usually pretty creative. I'm just very happy about my vest and I think it will come in very handy for the summer time because then I will still be able to go outside and enjoy being outside some. Mommy and daddy's trailer isn't very cool during the summer anyway because they only have a little window air conditioner which doesn't do a whole lot so I'm sure I'll be living in my vest and it's good that I have an extra set of inserts. After we got home from the doctors mommy gave me a nice bath and put me on my play mat and within a few minutes I fell asleep and took a nice nap. It's about 9:30pm now and I'm waking up and getting juicy so that means daddy and mommy are busy suctioning me out and I'm sure I will be up for a while now so my nurse should have a fun night with me. :-) I had my nap and now I'm ready to party. I will let you go now so I can go get my party started. Good night everyone.
Tuesday, April 15, 2008
Well, while everyone else was busy at the last minute with their taxes I got to spend my time at Johns Hopkins. I saw the GI doctor today and I got my new "mic key" button tube. This is what my feeding tube now looks like as you can see from the pictures. All they did to take the other one out is pulled it. Yeah, you heard me...they just pulled it right out through the little hole in my tummy. OUCH! It wasn't too bad though. It only hurt for a short time and now it is a little sore and will be so for a little while. Mommy and Daddy have a little getting used to with this tube but I'm sure they will be alright. See, this tube is only held in my stomach with a balloon that is inflated so that it doesn't come out. And it can be changed from time to time. But, as much as I like to pull on it...I hope I don't pull it out. It's pretty neat though. See, now mommy and daddy can unhook the tube and just close it off and then no tubes will be hanging from me. It will make it nice for bath time and church time especially when G -maw McKenzie holds me. No one will have to worry about a tube hanging down now when I'm off my food. As you can see from the pictures after I had my button installed I had to give some blood too. I have had quite a busy day. I will let mommy stop typing now since she has things she needs to put away and relax a little bit so I will talk to everyone later. I should sleep tonight hopefully after the day I have had.
Monday, April 14, 2008
Good evening everyone. Hope this evening finds everyone well. I have done pretty good today and my temperature has been pretty stable except for a little bit of time where I was cold and mommy had to put 3 blankets and a heater on me. My cooling vest came today so I'm very happy about that and I know mommy and daddy are just as happy. Before going to Texas nana and papa got me this music thing that when you push a button shaped like a seashell it plays music and fish move around and it lights up. Well, I have been pushing the button all afternoon and this evening and making it play music and making it stop playing the music. So, thanks nana and papa, I like it very much. Well, I have my GI appointment down at Johns Hopkins tomorrow at 3:30pm so it will be a long day and pray we don't run into a lot of traffic on the way back home. Good night everyone.
Saturday, April 12, 2008
Good evening everyone. I have had a pretty busy day today. I enjoyed some time outside today in my swing and enjoyed the nice breeze again. I was hot though so the breeze helped cool me off a bit. It was really nice in the house though since mommy and daddy opened the doors and let a cross breeze through. Mommy and daddy have to prop the doors open because the windows do not open and if we did open them they would have to stay that way. The breeze was nice. We also went over to grandmas and pop pop's house and played Uno Spin and ate some pizza and had coffee. It was fun watching mommy and daddy play the game and this time mommy and daddy didn't win at all. Of course, grandma had to win the most games. It was between her and Uncle Frankie. Pop Pop Bob didn't even win one game. Go figure. It must have been grandma's night or something. After a few hours of games as you can see I was just so exhausted and fell asleep right on grandma's dining room table. It was nice and cool though so it helped me relax because I was still so hot. So that has been my evening and I hope I can cool off some more and get some sleep tonight. I have a new nurse coming tonight so we'll see how she does. I always give new nurses a hard time so I'm going to try and be nice this time and give the new lady a break. We'll see what happens. Have a good night. Nitey Nite Nite.