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.

Friday, February 26, 2010

Funny Bathroom Story!


I guess we all have to have those funny bathroom stories and boy did I sure give one to mommy and aunt Ruth the other evening. I was over at grandma's for the evening since she was watching me that particular evening and so mommy was getting my bath water ready and I had made a little poopy in my diaper right before Aunt Ruth brought me back to the bath. Grandma warned her that she should put a diaper back on me until mommy was absolutely ready. Well, let's just say Aunt Ruth "thought" she would be ok. She was holding me with my head in one hand and feet in the other...all of a sudden mommy looked over and saw a stream shooting out...mommy said look out and so then Aunt Ruth pointed me in a different direction and finally that stopped but it got all over the floor and mommy's foot. :-) And it gets better...after that was over mommy looked over again and next thing that happened was plop plop plop plop on the towel. All this was over the nice clean towel mommy had laid down to put me on after I got out of the tub. To make matters worse they were laughing so hard 'cause I guess it was funny to them that Aunt Ruth finally handed me over to mommy and mommy was about ready to put me in the tub when Aunt Ruth leaned back against the wall and accidently turned out the light. After that...they both yelled for grandma and to top it off...she came in and snapped a picture. Oh it was such a joyous evening and we all had some laughter out of it. I will always keep things interesting.

Tuesday, February 23, 2010

Sitting




Posted by Picasa

Starting to stand!


Posted by Picasa

Cuteness






Total cuteness. Mommy took me back to the bedroom so I could help her fold some laundry and this is what happened. I fell asleep all curled up on daddy's pillow. So comfy.

Wednesday, February 10, 2010

February 10, 2010

Hi Everyone. Well, mommy and I are still hanging in there. Things are still so different but we are managing. I am totally 100% off my phenobarb!!! I finished it up last week. So I have been totally off of it for a week now and have been doing fairly well with it. I have been more alert and much more interactive as well as really making more sounds and all through my trache. The past 2 nights too I have slept pretty well. Better then I have in my entire 2 1/2 year life. :-) Maybe once this phenobarb really gets out of my system then hopefully I'll get a decent sleep pattern going. I know mommy would be happy about that. Other then that things are ok. Still adjusting. We have had lots and lots and lots of snow the past few days and it has been unbelievable to say the least. We got about 33 inches plus the first round and probably around 10 or so today! As you can see from the pictures below it is quite a lot of snow. Mommy had to shovel a path for pumpkin so she can use the bathroom. Aunt roof came over to help the other day shovel a path for pumpkin all the to the back of the house. Maybe when it's not so cold and windy mommy will take me out in the snow! I'll talk to everyone later.

Snow Snow and More Snow!





Wednesday, January 27, 2010

Just too Handsome For Words!





A First!!


Hey Everyone...I just wanted to let everyone who is reading this know that I got my first tooth the other day...actually I have 2 of them to be exact. I have one on each side. Mommy posted a picture for you to see if you can make it out. I was not very cooperative with mommy while she was trying to take a picture. It is in a hard place to take a picture but mommy did an ok job I think. :-) My first tooth and daddy isn't here to see it. That's ok though...I'm sure there will be many more "first" things that I will be doing. I just have to remember that daddy is and was very proud of me! It's only been about 3 weeks since Daddy went to be with Jesus and mommy and I are doing ok. We both have our moments sometimes but who wouldn't? Mommy and I are still trying to get things settled and moved around here and stuff to make it "ours" and how we want it but there is so much to do. One step at a time though. :-) On another note though...I go see my pediatrician tomorrow and she will weigh me and measure me so that should be pretty neat to see how I have grown. My feet have even gotten bigger finally. :-) I will let you all know how long and stuff I am when I find out at the doctors tomorrow! Until then...Bye bye.

Monday, January 11, 2010

Tribute to Daddy



I know it's been a while since I've been on the blog and it's with sadness that I have to tell you that daddy went to be with Jesus on January 3, 2010! He was a great daddy and also loved mommy very much and he will be greatly missed for sure! With God though...we will make it.

Wednesday, December 2, 2009

Just wanted to update and say that for now I guess we are no longer Johns Hopkins bound as mommy had to cancel all appointments because of payment. We are sitting holding tight to see what God has in store. Now it's trying to find other doctors in WV who would be as good as what I've had at Hopkins.

Sunday, November 29, 2009

Hey There Everybody! I know it's been a long while since I have talked and updated everyone. So sorry about that but things around here just get so busy sometimes that I don't allow mommy so much time to update. :-) We have pretty much been just hanging out here at home especially since it's flu season and the swine flu and all going around. I can pick up something very quickly so we have been cozy here at home. This was actually the first Sunday in such a long time that mommy and daddy actually got to go to church. I am still being weaned off my phenobarb and still have until February so my sleep has still been very messed up. Mommy and daddy and I are really hoping and praying that when I get off the phenobarb that I will get into a good sleep pattern. Daddy has still been looking for work too and the bad part about it is the fact that mommy has to call Johns Hopkins in the morning because we no longer have insurance for me through daddy's work so Hopkins will probably not take my WV Medicaid but that's why mommy has to call them to see if they will and if they won't then I don't know what we are going to do because that is where the reconstructionist is who has been seeing me about the reconstruction on my nose to hopefully one day get rid of my trach. My ENT is also there so not sure what will happen with all that now. I guess we will find out when mommy calls though. That's pretty much what has been happening around here. Mommy and daddy and I are just hanging out and enjoying each other's company and spending family time and making memories. You can see we've been busy by all the pictures in the posts to follow. :-) We will keep you all updated as things go a long...hopefully it won't be so long in between.

Santa's Little Helper



Christmas





Christmas fun





David and daddy having fun.