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 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.


Michele said...

WOW! My little guy is doing so great! Seeing him lift his head that long is awesome, and so good to see. I'm proud of David. And I'm proud of you too, Deb, and of Mark. You guys being so faithful to work with him is a good part of why he's doing so well!

Tara said...

How exciting Deb! I was moved beyond words to see how well David is doing and to hear how the Lord is providing for your needs with the wheelchair. Happy Easter you guys!!

Anonymous said...

Hey Mark, Deb, and David it is Bill McDonald here. I was just talking with Karen Bowmen this morning and she told me about how well David was progressing so I thought I would take a little peek into his life. How amazing is our God!!? You all are blessed beyond measure. Keep your faith strong and allow God to do the rest. These little videos of David made my day!
Have a blessed spring day......Bill

hevans7020 said...

This is an awesome video. Deb, trust me, never set your standards low for him. Give him the benefit of at least trying things and then just sit back and be amazed at how much they can do. We pray for your family every night.