Hey Everybody...sorry mommy hasn't been on here and updating in a while but sometimes just get so busy around here and mommy is tired. I have been fighting an ear infection and so I haven't been sleeping too well. Mostly not at all at nights. On top of everything else I am starting to get a little tooth and again...that doesn't make it very fun around here. :-) And when I don't feel good it causes me to have more seizures and things like that as well which sometimes interrupts my sleep! We are all doing good though and hanging in there and God's strength is getting us through. That and mommy has been drinking A LOT of coffee. :-) I have been doing really well though on my baby food that mommy has been giving me. I get to have pears and carrots and green beans and oatmeal and one can of formula now and I am definitely growing. Maybe even growing too big too fast so when we go back to see Dr. Levey at Kennedy Krieger we might have to do some adjustments. :-) I haven't had alot of gas with the baby food either and I am much more content! We have an appointment with my pediatrician tomorrow Wednesday the 25th to see if my ear infection has cleared up. Then on April 14th we go to Johns Hopkins to see again about reconstruction on my nose to open it up and maybe the possibility of not having my trache. We'll see what happens. It is certainly something to be in prayer about because this is big! Well...I think that just about brings you up to date so I will let mommy get off here and we'll keep taking pictures and posting some. :-) Love you all.
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, March 24, 2009
The vision therapists were here yesterday evening and so they are working with me and using some switches to learn how to activate toys and things. They had one that was above my head and all I had to do was turn my head and touch it and it would activate a toy. I was doing really well with it and then they decided to try another type of switch. This was one that I had to wear a headband so he could stick in there and it would hold. It was supposed to work so that if I just moved slightly it would activate the toy but it was not working so well and I was not a very happy camper as you can tell. :-)
Monday, March 23, 2009
Sunday, March 1, 2009
Wow...it's hard to believe that this is March already. Time has gone by quickly. Before you know it I'll be 2 years old. :-) Well...I have been doing pretty good. As always I have been keeping daddy and mommy very busy. I have been still very very very gassy and uncomfortable lately but mommy and grandma started giving me some baby food through my tube about 1 week ago and I've been doing pretty well on it. I am down to one can of formula throughout the day and then now I also get some baby prunes and carrots and pears and oatmeal. I feel more like a normal baby with having some food. And my skin used to be really really dry but since I've been on some baby food my skin is not nearly as dry. My new formula has Fiber in it and so my poopies were more formed and a little bit harder. It's funny because just yesterday I let a good log go and mommy was changing my diaper and dropped the turd right on the couch. But guess what though...it didn't make a mark at all. :-) And then of course I had to give mommy and daddy another good laugh last night after my bath because I was doing a lot of farting in the tub and as soon as mommy took me out and put me on the towel to start drying me off...yeah...I pooped right on the towel. So daddy had to run get another towel. It's so much fun around here sometimes and I'm sure you just love hearing my poop stories but sometimes they make for some good fun. :-) Since mommy has been giving me pears though now instead of apples...my poopies are getting softer now. Ok well I'll let mommy go now so she can get ready and feed me again soon so I'll catch you all later. Hope everyone is good.