Guess who everybody? Yeah, it's me. Sorry that it's been a while but mommy and daddy have been very busy and very very tired lately. See, my nurse was supposed to be back Wednesday night but she called on Wednesday and has some family needs that she really needs to take care of and doesn't know when she will be back to work. She is in a very tough situation so if you think about it you can pray for nurse Brenda and just pray that she will know what to do and that things will work out and that she would be able to get some sleep and hopefully soon will be able to return to work. So, having said that...Brenda was the only nurse and they have not found anyone else yet so that puts a little strain on mommy and daddy. Mommy tries to stay up most of the time and lets daddy sleep because he has to go to work and he can't go to work without having any sleep. Right now we have been altering our schedules a little bit and for the past few days grandma has had me in the evenings so mommy and daddy can go to bed about 6:30pm or 7:00pm and then go back over to grandma's to get me and bring me back and then daddy goes back to bed at about 11:00pm and mommy let's him sleep until about 3:00am and then he gets up so mommy can sleep from 3:00am to 5:00am and then daddy leaves for work at around 6:00am. Sometimes mommy can catch a nap during the day if I'm sleeping but I don't always sleep. Hopefully in another year or so we won't have to be doing all this once they are able to correct my nose and get rid of my trache. That's just the bad part right now is that someone has to be with me and up if I"m up because of needing to be suctioned out. So, it has been interesting around here. We are hanging in there though and mommy and daddy are doing the best that they can. I haven't really been bad for mommy and daddy though. I just am awake most of the night. Mommy never knew she could watch a marathon of Home Improvement for about 4 hours or so. Not much on anyways that early in the morning and watching TV certainly makes anyone sleepy anyways so sometimes mommy has to fix herself some coffee and some bacon or get something to eat in order to help her stay awake. ya gotta do what ya gotta do sometimes I guess. So, if mommy doesn't write everyday you'll know why because she is very tired. I have had fun hanging out with grandma though. We get some grandma/David time and that's pretty fun and special right there. Well, I'll let mommy go so she can get some things straightened up and try and get me settled. Talk to everyone 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.
Monday, May 26, 2008
I had a very fun day today celebrating memorial day over at grandma's house. We had a picnic and at way too much. Well, everyone else ate but all I had was formula...YUK! :-) We had fun though. I got to watch mommy and daddy play corn hole with uncle Frankie and aunt roof and great great great aunt Frances. And guess what? Daddy and mommy beat Uncle Frankie and Aunt Ruthie's butt! :-) And then Aunt Frances joined Uncle Frankie's team and tried to help him win. It was getting rather hot though so I had to come inside and layed on the nice cool floor to cool off. I had my vest on for a while and so that helped me cool down a little and kept me from getting really hot. I got comfy and slept for a little bit while mommy played games with grandma and aunt roof and great great great aunt Frances. We are back home now and it is very hot in mommy and daddy's house so they have all the doors open and am feeling a nice cool breeze. I'm started to get worked up again though so the vest might have to come back out. At least we have the vest. I am trying to be a good boy too for mommy and daddy because they have me by themselves for the next 2 nights. My nurse will be back on Wednesday. So, I'll warn you ahead of time in case mommy doesn't get to blog tomorrow night it's because she is very very tired. Talk to everyone later.
Saturday, May 24, 2008
I have had a pretty rough day today. My little toofies are coming in and they have really been bothering me today. I have just been very fussy and just plain 'ole don't feel very good. The only way that makes me feel at least a little bit better is to be held. Yeah...mommy and daddy and grandma are taking turns with that. I got to spend some time with grandma today while mommy and daddy worked around in the yard getting some things done that they have been wanting to get done. I had fun with grandma and she did her fair share of holding me too since it makes me feel better. I really do wish these darn things would just come in. Mommy can see the bumps but nothing poking through yet. I just say come on already. Well, mommy and daddy have their hands full the rest of the evening so I better let mommy go. Goodnight everyone.
Thursday, May 22, 2008
Hey Hey Hey...It's skinny David! How is everyone this evening? I'm doing pretty well. Grandma came over and saw me this morning so that was pretty fun. After she left though I got myself all worked up and threw up and mommy had to give me a bath and use my cooling vest. I don't know...maybe I was trying to say that I wanted grandma to stay longer. :-) That's ok though because I got to sit on the porch with mommy this late afternoon and watch grandma mow her grass. I kept waving as she would drive by. We also got to watch daddy weedwack the grass. And then, mommy and I went over later this evening to grandma's house and surprised her and boy did we have some fun. I just had a grand ole time laughing and smiling and trying to roll over and pushing up on my arms. I entertained mommy and grandma while they had coffee that mommy made and some bread that grandma made. I'm back home now...well, obviously if I'm writing you...ok mommy is typing and I'm telling her what to say. I just had my medicines and still going strong at playing on my mat. I know, you're probably thinking that how can I be playing on my mat and yet telling mommy what to type...believe me I can communicate with mommy from laying on my play mat.:-) I might be up all night again or I might just tire myself out so much that I'll sleep good tonight. Only time will tell. I better go now and say goodnight to everyone so...Goodnight.
Wednesday, May 21, 2008
Hi everyone. Well, my nurse is back tonight and I know that mommy is very happy because that means that she can actually get some sleep tonight. I slept for a few hours this afternoon so mommy got a little bit of sleep then too. I have been a good boy for mommy though. I haven't been too fussy either...just awake. I get my sleep but sometimes it's just not always at night. :-) Just so that everyone knows I have another appointment at Kennedy Krieger Institute in Baltimore on June 3 at 1:30pm. It's down in Baltimore so that should be a fun trip especially with gas prices the way they are. I'm glad we don't have to go down too often. Well, mommy is tired so I will let her go. Take care everyone.
Tuesday, May 20, 2008
Well, mommy and daddy have one more night without the nurse. I know that mommy is very exhausted since I really haven't been sleeping too much at night so I'm glad she only has one more night and then tomorrow night she can hopefully catch up on her rest. I have really been a good boy for mommy and daddy so far. I have been trying to turn over again this evening but can't make it all the way over tonight. I'm getting good though at rolling from my tummy to my back with no problems at all. I gave mommy a shower tonight though...I know...as if she needed that tonight right? I had just had my bath and mommy was drying me off and got ready to put the diaper underneath me and had my legs raised and all of a sudden I heard daddy yelling "whoa." It was really a funny moment and so then mommy had to wipe me down again with the washcloth because I got myself pretty good too. We all had a good laugh. I guess you had to be there. Hope everyone is doing well. Goodnight everyone.
Sunday, May 18, 2008
Sorry that I haven't written in a while everyone but mommy was having issues with her computer. Mommy and Daddy have also been tired because of having no nurse and won't until Wednesday evening. I have been a pretty good boy for them though most of the time. Mommy has had to sleep in the chair with me at night so that both of us can at least sleep a few hours. Last night mommy and daddy slept in shifts since it was a weekend and didn't have to get up too early for church. Mommy will more than likely sleep out in the living room in the chair with me so that she can at least maybe sleep a couple hours and let daddy sleep so that he can go to work. That's what usually happens during the week when we don't have a nurse. Mommy and daddy take good care of me though and I really love them for that. They are such good parents. I have had a very good and busy weekend though. On Friday night I went with mommy and daddy to the new pizza place over by the new Walmart and then on Saturday I helped mommy put together a grill. Ok...so I watched her put it together for a little while and then daddy rescued me from the boredom and brought me back inside and let me play. I really do like helping mommy and I had fun with her. My temperature has been pretty good this weekend so that has been very nice. Still slobbering a lot so I'm still working on them teeth. I just wish they would come in already. Well, I will let mommy go since she has a few things to do before maybe going to take a little nap so I will talk to everyone tomorrow.
Tuesday, May 13, 2008
Good evening. Today was a good day for me. I had a lot of fun today. Aunt Roof had off work today so she came over for a little while this afternoon and so mommy and I went with her to K-mart and to the bank. It was fun to get out for a little bit and the ride put me to sleep. I was asleep when we came back home and so mommy just left me in my car seat for a while and I rather enjoyed it. My occupational therapist also came over today and boy did I ever impress her. I was just a happy little boy. I was smiling and laughing and just having a good time. She is pleased at how well I'm still pushing up and holding my head up when placed on my tummy and today guess what I did...You will like this one too Aunt Michele...I actually was trying to crawl and doing that motion and then I just got both of my knees under me and moved myself a few inches. I was going to keep going but mommy had to bring me back down to the bottom of my mat because I would have been on the floor. And tonight though I actually was moving myself a little bit with the crawling type motion. It wasn't a whole lot but I'm sure determined. Having said all that...I'm moving around a bit more now and so mommy had to make my play area a little bigger so I can move around a little easier. I wasn't so sure about it at first but I think I like it now. Mommy thinks it will also teach me to maybe find my toys and grab onto them with them just laying there next to me instead of hanging over my head. We'll see what happens. Well, that was pretty much my day. My temperature has been great today and haven't been on either extreme. I've been right in the middle. :-) Well, gotta go now but I'll talk to everyone later. Goodnight.
Monday, May 12, 2008
Hi again everyone. I have had lots of gas today. Mommy had her hands full with me today. I got fussy because of my gas pains and so that led me to getting hot and mommy had to use the vest and gave me some Tylenol and I finally settled down around 3:00pm and slept for a few hours. Since being awake this evening I have been pretty good and having some gas pains but I have made a few little poopies so am feeling a little better. I got to spend some time with daddy tonight and I really enjoyed that. Daddy just put some new batteries in my music box so I am playing on my mat and enjoying my music box and am waiting for nurse Brenda to show up in a little while. I hope this evening finds everyone well. Good night everyone.
Sunday, May 11, 2008
Hi everyone. I kept mommy and daddy pretty busy this weekend. I did not sleep much at all this weekend. Maybe a few hours the whole weekend so we are all very tired. Today was a good day though because it was mother's day. Today in church mommy and daddy were part of the baby dedication at church to dedicate me. I really did pretty well and it was lots of fun. I have been very very fussy tonight though because I've been having terrible gas pains and it's no fun at all. I hope I get rid of them soon because now with me being fussy and all my temperature is up and I am wearing my vest. I just go from one extreme to the other sometimes. Well, the nurse is here now so mommy and daddy will be able to get some sleep hopefully and I hope I do too. I will let mommy go now and talk to everyone later. Goodnight everyone.
Thursday, May 8, 2008
Today was a good day for me. Mommy took me over to grandma's today so we could cheer her up and help her clean up the house to help her dealergize her house. Ok, well mommy washed all the curtains and vacuumed and dusted up high and down low and vacuumed and put the curtains all back up while grandma held me! :-) Mommy did such a great job though. I liked being with grandma and it helped make her day a lot better and cheered her up and mommy liked helping grandma out in order to help her feel better from her severe chronic allergies. I took a couple of naps today which was good and am still a little fussy with my gas pains but I'm doing alright and hope I have a good night sleep. My temperature has actually been pretty good today too. I got a little hot over at grandma's but mommy had my vest with her and I only had to wear it for like 10 or 15 minutes and then I was good to go and haven't had any more temperature issues so far. Well, goodnight everyone. Have a great evening.
Wednesday, May 7, 2008
I am kind of sad tonight. Aunt Michele and Nana left today and I miss them. Aunt Michele was really good at working me out and playing with me on my mat. They both also liked holding me as well though so I didn't mind that at all. Aunt Michele, when you read this you are going to be so excited because guess what I did this afternoon? Yep, I TURNED OVER ONTO MY TUMMY FROM MY BACK AND GOT MY LEGS UNDERNEATH ME AND JUST ABOUT HAD MY ARM OUT FROM UNDER ME!!! Daddy got to see that one and for some reason when I did that I heard all this loud excited screaming. I must have surprised mommy and daddy or something. And this time when I rolled over it was fast and quick in one motion. I had a pretty good day today until later this evening when I got myself really hot because it was hot in here and so mommy and daddy had to do the bath thing and the vest thing and that was pretty much the evening. I just settled down about an hour or so ago and have been sleeping now for a couple of hours. That's ok though because I need my sleep plus I'll just get up and party with the nurse later. :-) I hope that I get to see grandma soon too because she has been very sick and she hasn't gotten to see me hardly at all this week. I know she is going through withdraw. She went to the doctor today though and found out she had severe allergies so hopefully she will get better soon. Well, I will let mom go and talk to you all later. Goodnight.