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.

Wednesday, April 29, 2009

David is trying to roll over

This is me trying to turn myself on my tummy. I will you just wait and see.

Now you can see why mommy has me on the floor. Sometimes I don't stop. :-)

Friday, April 17, 2009

What a Day!!!

Hey Everybody! Boy did mommy and grandma and me have an exciting day on Thursday! It all started off by me not sleeping for Grandma at all on Wednesday night...I know...I'm a bad boy. :-) Well, Thursday morning grandma had to go get some groceries so her and mommy and I went to the grocery store. Grandma likes to use those motorized carts because it's easier for her to get through the store because of her bad knees and hip. Anyways....we were cruisin through the store with grandma driving her motor cart and mommy was pushing me in my car seat in the regular cart. Well, I don't know what grandma was thinking but she about ran a man over coming to the end of one of the aisles. She forgot how to stop and almost ran over him but she stopped in time and was letting him pass but then pushed the button and started going forward again and about hit the man again!!! Oh we had a good laugh. It was funny. Then we came home and my uncles dog Ebony was on grandma's front porch and the back door to his house was wide open. Don't know if someone was trying to break in or not. Then since it was such a nice day outside grandma and mommy took me for a golf cart ride like usual since I like them very much. Grandma had to get water for the chickens at the pump house so we had to use the golf cart anyways to hall the water. I was in my car seat like usual riding on the seat next to grandma. We stopped at the pump house so mommy and grandma could get the water and were messing with the hose. Well...to make a long story short...the golf cart was kind of on a hill too so we were a little bit tilted but I was sitting in my seat just fine. Well, next thing you know...grandma heard a THUD and called for mommy and when mommy turned around...the car seat was on the floor of the golf cart and she couldn't see me at first. That was because I had somehow managed to roll out of my car seat and onto the ground! Yeah it was a scary time for all of us but it's one of those things that will stick with mommy for the rest of her life. I am ok but I have a good bruise under my eye. Yes...I have a black eye! These are pictures of my black eye but let me tell ya the pictures don't do it justice. Well, I just thought I'd share the exciting day that we had. Today mommy has me on the floor on some blankets because I almost fell off the couch this morning on my wedge. I'm telling you people that I'm on the move now. Mommy figured that the floor was the safest place for me right now.

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Wednesday, April 8, 2009

April 8, 2008

Hello...mommy and daddy have had their hands full with me...ok I guess I can throw grandma in there too. :-) I had an ear infection a few weeks back which was not fun so I had to be put on an antibiotic for that and it seems to have cleared up now. I hope it stays away. On top of the ear infection and getting over that...I am now starting the joys of teething. Yes...teething...and it can take longer for mine to come in especially since I really don't get anything by mouth but I do chew on my pacifier which helps some. I have been fussy fussy fussy though 'cause my toofies hurt coming in. I feel sorry for mommy and daddy and grandma. :-) I didn't do well with sleeeping either because of my ear infection and teething. Although...one of mommies friends suggested some homeopathic Hylands teething tablets and they have been a life saver. They work really well and help me out a lot. Mommy had to try something. :-) So who knows how long the teething journey will last but eventually...this too shall pass as mommy says. There has been so much going on. This easter weekend I will be visited by some people from Indianapolis IN. Yeah...they are coming all that way to see me. See...there was another little boy like me in IN and mommy became friends with his parents before I was even born by emailing and talking on the internet. Well, this little boy Sammy died just short of his 5th birthday! To make a long story short they are graciously passing along his wheelchair to us. We are totally humbled at this big kind gesture. They have always wanted to meet me so they are coming this weekend. April 10 was also Sammy's birthday so they wanted to celebrate it this year by bringing me his wheelchair...what a noble thing to do. How can you ever repay someone for something like that? I am excited to meet them and I'm sure it will be a great weekend. God truly puts people in your life for different reasons and I'm glad mommy met them and that we will get to meet them in person. God is awesome! I also have the appointment at Johns Hopkins with the reconstructionist on April 14th which will be a lot to pray about. Well, I better let mommy go so she can upload some pictures and videos of me so enjoy and Happy Easter to everyone!

Getting hard to contain me, the little monkey now. I will be laying longways on the couch and then all of a sudden you'll turn around and I'm in the crack laying the other way!

so cute in my sailboat outfit.

This is a little video of me learning to use my switch toys.

This video shows you how I like to "move"

This video almost made mommy cry. For someone who was not supposed to do much of anything...I"m proving them wrong. :-) This is the best and most I've held my head up. Mommy was so blessed when she saw me doing it. Thank you God for how far you have allowed me to come and all the things I can do.