Well, I stayed at grandma's last night and I hate to say it but I was up all night for her too. Sorry about that grandma. At least mommy was able to get a good night sleep. Mommy and daddy got me a new pair of shoes to try and I think I look pretty darn studly in them what do you think? If anyone is interested as I know some of you are I wear an infant size 1 in shoes. Also, if anyone knows of someone or has one or wants to get one mommy is looking for a walker for me. It doesn't have to be anything fancy or anything like that. Just something I can sit in and learn to sit up straighter and maybe learn to walk and move a bit. Tomorrow for Labor Day we are having a good 'ole party over at grandma's. My Aunt Roofies birthday was last week so we are having her birthday dinner as part of our Labor Day festivities. It should be lots of fun. Since daddy has that day off too I get to see him all day and spend some time with him too. I just can't wait until regular season of football starts and I can watch some football with dad watching the Florida Gators play college football and the Dallas Cowboys play the NFL. Well, I'll let mommy go but I just wanted to say a few words and let you see my new shoes. Talk to you all later.
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, August 23, 2008
Hello everyone. I'm doing ok. Mommy had a rough night with me last night to say the least. It hasn't happened to me in a while but I just got really really hot and fussy and that just got the ball rolling. Mommy had to give me a nice cool bath and the cooling vest came out and mommy had to give me Tylenol. I gave her a hard time for a little bit. But, daddy got up about 3:30 this morning to help mommy out and helped calm me down. Daddy has his own little tricks to get me to calm down and for some reason he got me to calm down better than mommy did. Sorry mom, I really just missed daddy and wanted to spend some time with him so I figured I would throw a fit so that he would pay attention to me. :-) I am doing better today though and I'm going to be staying over at grandma's house tonight so mommy and daddy can get a little bit of sleep. Daddy actually "went out with the guys" and so mommy has some time all to herself. I bet she goes to sleep! :-) I do like to give mommy and daddy a hard time sometimes but that just keeps them on their toes. We are still working on the nursing situation and hopefully it will get resolved very soon. Pray specifically that people would do what they need to do and that things would fall into place and that we would have a nurse maybe Thursday at the latest. If you could pray to that end that would be great because this has gone on long enough. Well, I will let mommy go so she can go to sleep so talk to you all later.
Monday, August 18, 2008
Good evening there everyone. You could pray for me that I start feeling better and that I start sleeping some at night for mommy. I haven't slept very much again the past 2 days so I know mommy and daddy are tired. I actually slept though from about 2:00pm this afternoon until about 5:30pm so mommy go a little nap in until about 4:00pm so that she could feed me. I'm just one little firecracker sometimes. :-) I have a funny story to tell you though. Tonight when mommy and daddy were giving me my bath I was a bad boy. I always like to pass my gas in the tub 'cause I like to make bubbles but I got this excited look and mood on my face which I tend to do before I make a bowel movement and mommy said to daddy, "I think he's getting ready to poop." Well, I calmed down and so mommy though she was in the clear until I made my "poopy" face and yep...out came some little turds floating to the top! :-) It was really quite funny and I'm always trying something new. :-) Well, I just had to share my funny story about pooping in my tub. Have a great and wonderful evening everyone.
Thursday, August 14, 2008
Well, here's the scoop with nursing. Medicaid has denied me nursing in the home because they say it is not medically necessary that I have nursing. Go figure huh? This is just the most frustrating thing to say the least. There is some kind of appeal that mommy and daddy will have to go through but who knows how long that will take and when we would even have a nurse again. Mommy has been looking online about this special mattress that is supposed to help kids and adults with brain conditions and other things sleep better at night. The mattress though costs about $1500. Kind of pricey huh? All this good equipment for those who are disabled and yet no one can afford it. Go figure. If anyone would like to make a donation so that mommy and daddy could get this for me so that they can start sleeping at night too that would be nice. Just send any donation and mark it "mattress." Some good news though...I had my GI appointment on Tuesday at Johns Hopkins and he seemed to think I was doing well and was proportionate for my size and height. I now weigh 14lbs and am 24 1/4 inches long. I'm growing boy. I had 3 shots today too so pray for mommy and daddy tonight because I am usually very cranky and so pray that I would sleep good tonight and not be too bad for mommy as she is the one who has to stay up with me so daddy can sleep because he has to work. Well, I'm really starting to get fussy and I think I need some momma lovin' so I will talk to everyone later. Goodnight everybody.
Thursday, August 7, 2008
I know...long time no talk. Things have been crazy around here and we still have no nurse yet. It's some crazy stupid thing where the nursing agency has to get some kind of approval. It's just plain nuts. Mommy and daddy are hanging in there though and they are doing great at taking care of me. Although, I have been giving mommy a hard time the past few nights with not really sleeping but maybe 5 minutes here or there. I gotta be a bad boy some time don't I? :-) I'm never bad. Mommy and daddy came to the conclusion though that I am normal and everyone else are the ones with the issues. :-) I have been getting used to me new feeding schedule so that will probably take a little bit of time and then I'm sure I will sleep better at night. Mommy and daddy though just got me a piece of memory type foam stuff to maybe help me sleep a little better. Who knows. I have been really juicy though too and so that has definitely been keeping mommy and daddy very busy. Well, I'll let mommy go now because it's time for my 8:00pm feeding so I will talk to you all later. Goodnight everyone.
Friday, August 1, 2008
Hey Hey Hey Everyone. Hopefully things will get back into a routine soon but still no nurse for the weekend either. Please pray that the nursing agency will do what they can about getting authorization and get nurse Brenda back in here on Monday. This is just getting absolutely ridiculous now!! This has been a busy week since I turned 1 year old on Sunday and then Nana and Papa stayed until Wednesday and then Pop Pop's family came in today and I get to see my cousins Maria and Jake and Ben and Danny. They will be here the weekend so it will be fun hanging out with them. Mommy and Daddy changed my feeding schedule to to make me feel more like a normal baby and I have more freedom now too. They are feeding me one certain amount every 4 hours and it's been working well so far. Now I don't have to be hooked up to my pump and they are still giving me my formula through my tube but are using a big syringe and giving me more of a bolus type feed. Mommy gives me a little and then burps me and then gives me a little more and then burps me again and then gives me the rest and then burps me again if I need it. I have been doing ok with it so far. I am enjoying my freedom. I am getting about 3.2 oz of formula every 4 hours. That may not seem like a lot but for me and my smaller stomach that is very good for me. Well, now mommy has to stay up until at least Midnight with me so she can feed me again at midnight. Goodnight everyone.