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.
Saturday, July 26, 2008
Friday, July 25, 2008
Boy today was kind of a busy day. There were lots of visitors at our house today because of my birthday being on Sunday some people just popped in today since they won't be around on Sunday. Nana and Papa and Aunt Michele were over today too. It was great fun. Papa mowed all the grass and Nana even was on the mower too. I think Aunt Michele got a picture of that action. :-) I slept a good bit of the day but I think that's because I got a little bit cool and so mommy then had to dress me in some long sleeves and pants. It sure wasn't long after that though that I was warmed up. I think the bath mommy and daddy gave me helped me out too. We went over to grandma's house for dinner this evening and had some of Aunt Michele's meatloaf and potatoes and green beans. Papa also made a tomato salad with tomatoes and onions and oil and vinegar. Let me tell you what too boy, I had a taste of the dressing on the salad and I really loved it. I didn't even make a funny face other than my eyes getting really big and me wanting more. I'm getting excited to celebrate my birthday with a party tomorrow. It's a day early but we didn't want to have my party on a Sunday with going to church and all. It will be fun and don't worry...I will make sure mommy puts lots of pictures on the blog about the party so you can see how much fun we all had. Well, I gotta let mommy go so catch you all later. Goodnight everyone.
Wednesday, July 23, 2008
I know it has been such a long time since I have written so hello everyone. Mommy and daddy have been doing a good job all this month with having me by themselves at night with no nurse. Things have been pretty busy around here though. Guess what...I am having my 1st birthday party on Saturday!!!! Can you believe that I will be 1 year old on July 27 which is Sunday? I'm a big bad dude. Nana and Papa and Aunt Michele are flying in on Thursday and will be here for a few days. That's why we are having my party on Saturday over at grandma's house. It will be so much fun and I hope I get to eat lots of cake! :-) Today, we had some people from the WV Deaf and Blind School come to see about my vision. I actually did ok. I tend to see more off to my left than anywhere else and they left mommy and daddy with some cool little toys to help me learn to hopefully see better and to work with me to try and get me to see off to my right as well. Mommy and daddy have more stuff to do now. :-) It's cool though...mommy is very excited to be able to work with me and have some fun with me now knowing what I can see and where and all that. I know mommy and daddy will do a very good job and they have also offered to come out every so often to work with me some more and give mommy and daddy some more insight as to what they can do and how I have improved. Pretty cool stuff. My occupational therapist also ordered me this week a feeder type seat to where I can sit up in a full upright position with support as well as being able to rest my head. It also reclines too though. I can't wait until it gets here to try it out. I think I will like it a whole lot. Well, I will let mommy go now so she can get a few things in order before Mrs. Johnson gets here. She has offered to watch me tonight so mommy and daddy can sleep good tonight. Grandma actually had me last night too by herself so mommy could get a little rest. Only about a week or so left before mommy and daddy have the nurse back. Catch everyone later.
Saturday, July 12, 2008
Hi There everybody. Just wanted to let you know that I haven't dropped off the face of the earth!! :-) Mommy and daddy have been busy with me and trying to get sleep as well since we don't have a nurse for another 3 weeks. Daddy and mommy have done a great job though so far this week. I actually slept for them last night from about 8:00pm until about 1:00am! That's pretty good I think. Only 3 more weeks to go. Well, I have had a pretty long day today. When I woke up this morning I was really gassy and just fussy and hot. Well, that started a whole gamma of things. From the cooling vest to a bath to mommy holding me to being on the floor to getting Tylenol to playing my music box. It was fun around here this morning. We then had to take my Auntie Foo Foo and cousin Alysa back today and so already being fussy was not a fun trip. I slept most of the way home though so mommy and grandma got a little break. :-) After that trip today I came home and was finally glad to stretch out on my play area and yes...got a little hot again so out came the vest and then mommy and daddy took me in the hot tub. I had so much fun kicking my legs and laughing and playing in my little boat and it cooled me off which was nice. I'm trying to wind down now from a long day and maybe I'll sleep again for mommy and daddy tonight. I will talk to everyone later and even though mommy and me may not get to the blog every night we will try to write at least once a week for the next several weeks. It all depends on how good I am and how tired mommy and daddy are. Catch you all later. Goodnight.
Friday, July 4, 2008
Good evening there folks. We did our fireworks last night since Uncle Frankie had to work today and the weekend. It was lots of fun. We had a picnic over at grandma's and ate way too much again. Today we just hung out at grandma's and played games and I slept some and we just had some good ole fashioned fun. Well, mommy and daddy are in for some fun the rest of this month. Long story short is now my medicaid for the month of July does not cover any kind of nursing. It's really stupid and no fault of our own either because people don't let you know what is exactly going on and what you need to do. So, because my medicaid is not covering the month of July and Daddy's insurance does not cover any nursing either we don't have any nursing coverage until August. Unless Daddy and mommy can come up with about $4,000 in order to pay the nurse to be here they have to do it all by themselves. Hopefully though I will be a good boy for them and sleep a little bit at nights so that mommy and daddy can get some sleep. I know though that they will work it all out and things will work out but if you think about it pray for mommy and daddy to have the strength to get through the next 4 weeks!! Well, I will let mommy go so she can get settled and get some rest the first part of the night as daddy will be up for the first part of the night in order to let mommy get some sleep and then she will get up and let daddy get some sleep. Goodnight everyone.
Wednesday, July 2, 2008
Today was kind of a busy day today for me. Mommy had me in my bumbo seat this morning for a little bit and I liked sitting up and even burped a few times. My bumbo seat helps me learn how to sit and hold my head up. Alysa and Auntie Foo Foo came over this morning again and Alysa and I had fun together. She played with me a little bit in my bumbo seat and she suctioned me out quite a few times today too and is getting really good at it. I also threw up just a little bit clearing all the phlegm from my throat and so mommy had to give me a bath and Alysa helped mommy do that. Then Alysa picked out my cute outfit that I am wearing in these pictures and I look so darn cute if I must say so myself. It was then medicine time and Alysa learned today how to give me my medicines and she did good. We had to go to Walmart too and so Alysa pushed me all through Walmart. We then spent some time over at grandmas this evening and so now I am very tired and hopefully will sleep good tonight. At grandma's I had about a teaspoonful of baby cereal and that was yummy. I'm ready to call it a night so I'll let mommy go and talk to you all later. Nite Nite.
Tuesday, July 1, 2008
Boy, where in the world did June go? It's hard to believe that at the end of this month I will be a year old! Mommy and daddy are going to have a special party for me and my Nana and papa and hopefully aunt Michele will be here. Well, I had fun again today with Auntie Foo Foo and cousin Alysa. And guess what Alyssa did today for me...she suctioned me out all by herself. Mommy was getting my medicines ready and Auntie Foo Foo wasn't sure about it so Alysa stepped in and did it all by herself and did a good job. She also did it again this evening too. We have been teaching her how to do it the past few days and today she just stepped up and did it. Thanks Alysa. Mommy and Alysa colored again this afternoon while Auntie held me for a while. I was in a relaxed mood today and just not feeling too good. I have been slobbering a whole lot today and my toofies are bothering me. While we were over at grandma's this evening she put some orajel on my gums and that helped settle me down and I went to sleep for a few hours. I also had a little bit of grape juice from my bottle. Just a few sips but it helped my mouth feel better. I didn't know that grape juice was a little bitter but I soon found out. :-) Well, goodnight everyone and I will talk to you later.