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.

Monday, June 30, 2008

June 30, 2008

Hi There Everybody. I had a great day today. Auntie Foo Foo and Alysa came over today and played with me. Auntie had me laughing so hard today that I blew my himidivent off! My humidivent is what fits over my trache to filter out all the stuff in the air and provide moisture to my trache. Alysa was even holding me a couple of times today too and that was fun. Mommy also had fun this evening playing with Alysa over at grandma's and they made brownies and Aunt Roof came over for a little bit too. I do have fun with Alysa and Auntie Foo Foo and I'm sure they love me as well. Mommy had to smile today when Alysa came up to her in the kitchen and said, "Debbie, your little son is just so unresistable!" It was cute. For anyone who wants to know, Alysa is 8 years old so...out of the mouth of babes huh? :-) Well, I'm starting to get a little fussy now as we just got back from being over at grandma's and I'm starting to get a little hot so I'm going to let mommy go so she can get my vest and help me cool off so I will catch everyone later. Goodnight.

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Sunday, June 29, 2008

June 29, 2008

I can't believe that June is almost over. In another month I will be a whole year old! Can you believe that? Well, I have been a pretty good boy for mommy and daddy this weekend. I haven't slept much at night which was usual and daddy had to work this weekend again with some overtime to try and help out with some bills and things. So, I haven't really seen him a whole lot this weekend but we have spent a little bit of time together this evening for a few minutes. My great great aunt foo foo is here though and my 3rd cousin Alyssa. I have been having fun with them and it's been fun having them here. Alyssa has been playing with me and thinks I'm just the cutest little baby and boy am I eating that up. :-) I get to see them all week so that will be really fun. It breaks up my day and I know it helps mommy out too with just having someone else there to humor me sometimes. :-) I hope to maybe get in the pool sometime this week with Alyssa so that should be something to look forward to. Mommy has a little sit down pool and Alyssa has had lots of fun cooling off in there the past couple of days. She's like a little fishy. Well, mommy and daddy have had a long day so I won't stay on here long but I will talk to everyone later. Goodnight everyone.
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Thursday, June 26, 2008

June 26, 2008

Hey There Strangers. I know, I'm the stranger huh? Sorry we haven't written in a long while but mommy has been sick the past few days and is now feeling much better. She had to call daddy home from work on Monday and as soon as daddy got home mommy went right to bed the rest of the day! She still was not feeling well on Tuesday so daddy had to stay home again in order to take care of me so that mommy could stay in bed again. On Wednesday daddy really had to go back to work and so with mommy still not feeling well we had to set up camp with me right on the floor next to the couch so mommy could lay down and yet still had to take care of me. Poor mommy. She is feeling much better today though and I tell ya what...I have really missed her because I really didn't get to see her very much the past few days and was just out of sorts. But today was a different story. Buddy, I had my mommy back and I was just the happiest playful little boy today because I could sense that mommy was feeling better and was holding me and talking to me and that made me very very happy. I hope I don't get what she had though. She threw up once and felt really bad on her stomach and had chills and sweats and then the next few days she had diarrhea and couldn't stay out of the bathroom. Today like I said has been a very good day and I had lots of fun with mommy today. We played together and laughed and smiled and she even got to clean her house. I got to see grandma this morning too for a few hours and that was also great. Wait...it gets better...this evening grandma came over and got in the hot tub with me and mommy and boy did we have a blast. I was just laughing and smiling and kicking my legs and it was lots and lots of fun. So, grandma, we'll have to do this again real soon. :-) Well, I let mommy go so she can relax a little bit before the nurse comes tonight so I will talk to everyone later. Have fun everyone.

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Thursday, June 19, 2008

More Pictures!

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Play Area

Mommy had to make my play area bigger so she used these foam letters and I was having fun on them today.

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Wednesday, June 18, 2008

June 18, 2008

Guess what I did to mommy and daddy again tonight? I pooped in my towel again. Mommy had just taken me out of the bath tub and daddy was drying me off in my towel when I started letting her rip with some good gas and then...yep...pooped right in the towel. :-) I like doing that to them. It's fun. :-) Well, I have had a good day again today and mommy really didn't have to suction me out a whole lot today which was good because that allowed her to get some housework and laundry done today. I was a good boy for mommy today. I also didn't get really hot or cold today. I was just right. I think this cooler weather helps with all that and plus the fact that I really wasn't fussy today. See, I give mommy a break every now and then. :-) Well, mommy has a few more things to do this evening so I will let her go and I will talk to everyone later.

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Some New Pictures!

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Tuesday, June 17, 2008

June 17, 2008

Hey Everyone. Boy have I been fussy for mommy today. I have had lots of gas today and so that go me worked up and my temperature to go up so mommy had to get the vest out and use it and we even got in the hot tub too to cool off a little bit and that seemed to help. It was very relaxing. Grandma came to see me this evening for a little while and I liked that very much. It was fun seeing her this evening. Although, grandma is a little bummed out because someone stole their golf cart the other night!! Grandma and pop pop depended on that golf cart for a lot of things especially grandma with her bad knees and couldn't walk that far would use the golf cart to come over to see me a lot of times. And now, I don't get to have any golf cart rides either and that really helped me settle down most of the time too was to just go for a ride on grandma's golf cart. I doubt they will ever find it but I really pray that maybe it will turn up very soon. I don't know what we will do without it. Oh well. Well, that's what's been happening around here the past couple of days and I hope that I start feeling better soon too. I gotta let mommy go now so she can change my food bag. Later everyone.

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Sunday, June 15, 2008

June 15, 2008

Today was a fun day. We got to go to church this morning and celebrated Father's Day and G-maw McKenzie got to hold me in church this morning. I got a little juicy again this morning and she was holding me and so she took me out to the foyer and mommy went out too and showed her how to suction me. Now she knows how to do it and she said that now she won't have to bother mommy or daddy anymore because she knows what to do now and she can do it. :-) We came home from church and believe it or not we all took a long nap this afternoon. I fell asleep and so then mommy and daddy were able to sleep as well since I was up all night. :-) I'd say we all had about a 2 and a half hour nap or so and it was much needed especially for daddy and mommy. After we woke up we went over and saw grandma for a few hours and that's always fun seeing grandma. We came back home and mommy let me get in the hot tub again and she got me a blow up boat that I can sit in now and I was just kicking away. I liked my new boat. After the hot tub mommy and daddy gave me my bath and now I'm trying to wind down from the day in front of my fan on the floor. Boy, what a day. I will let mommy go now so she can fix daddy's lunch for tomorrow since he has to get up at 4:30am to go to work. Talk to you all later. Goodnight everyone.

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I love my DADDY!

Happy Father's Day.
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Saturday, June 14, 2008

Hot Tub

Well, yesterday was my first day that mommy and daddy took me in their hot tub. And those of you who are looking at this and seeing that he doesn't have his humidivent on don't worry...It fell off right before mommy was ready to snap the pictures and so daddy was really careful in holding me so I didn't get any water in my trache. It's all ok. :-) I had fun though and it was a new experience for me too. I was actually kicking my legs in the water too and then mommy was holding me and kind of dipping me up and down and I was just laughing and smiling and having a good time. It really was fun and it cooled me off too. In the summer time mommy and daddy like to use the hot tub as their pool so they can cool off. Thanks mommy and daddy for the new experience. I would like to do that again.

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Thursday, June 12, 2008

Family Resemblence?

Mommy found these pictures of her when she was little. Anyone who knows me or has seen some pictures...don't you think that I look a lot like mommy when she was little. The first one being the smirk and grin I like to give and the second picture if you cover up the hair or imagine it a different color don't you think I look like mommy? Go figure. :-)
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June 12, 2008

Howdy there everyone. I was a pretty good boy for mommy today but I was still kind of juicy at a few points in time. I got a little hot this evening though and so mommy and daddy gave me my bath early and I had my cooling vest on and some Tylenol. I soon settled down but it wasn't until mommy and I went over and saw grandma. We needed to take grandma some coffee and figured we would cheer her up and that we did. She got to settle me down so that made her feel better. Thanks grandma. Mommy and grandma also got to looking at some old pictures and mommy found one of her when she was little that looks just like me. It's kind of scary. Mommy and grandma had fun reminiscing though for a little bit this evening. I am now back home and have had my 9:00pm medicines and getting ready to go to sleep so I will talk to you later. Goodnight.

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Wednesday, June 11, 2008

June 11, 2008

Good evening everyone. I have had a pretty good day today. I haven't gotten too hot today so that has been a nice break for mommy today. :-) I have been really flemmy today though so I have had to be suctioned a lot so that has kept mommy and daddy pretty busy. I did though give mommy and daddy a good laugh tonight and I thought it was pretty funny myself. After I had my bath daddy carried me to the bedroom in my towel like always and layed me on my bed in my towel and I was getting really flemmy and bringing a lot of stuff up so while he was sitting me up mommy was getting the suction machine and helped clear some of my flem out but I was still coughing up some more flem and mommy sucked me out again and guess what...while all that was going on I was passing lots of gas and then...yep I pooped really really good and luckily the towel was still under me. They hadn't had a chance to put my diaper on me yet so I just used the towel instead. :-) Pretty funny huh? We all had a good laugh! Well, gotta get ready for nurse Brenda to come so I will talk to you all later. Have a great evening everyone. Nite Nite.

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Tuesday, June 10, 2008

June 10, 2008

Hey There Everyone. It's sure has been at hot one the past couple of days. We have survived the best that we can though. Mommy and daddy have been using the window air conditioner and it feels great in here until about 2:00 to 6:00pm and then it get to be very very hot in here. Mommy blows a fan on me which seems to help most of the time and then when it starts getting really hot and I get hot then mommy has to use the vest but that's ok because it works. Mommy has had her hands full with me today. I have been very fussy today. My gums were bothering me this morning and then I didn't like those storms that came through and then I got gas and got into that vicious cycle tonight with being fussy and then getting worked up and then getting hot and then getting more worked up and passing gas and then getting hot. It's so fun around here sometimes. I had my bath and then mommy put my vest on me and now I'm cooling off nicely on the floor with the fan blowing on me. After my long day I should sleep good tonight. At least I hope so. At least we'll get some relief from the hot weather tomorrow. I have still been turning myself over and today I was propped up on the pillow on the floor and next thing mommy knew she turned around and I was over on my tummy on the floor. I had rolled off my blankets onto the floor and then was trying to keep going and turn myself back onto my back and I bumped my little noggin on the floor. It didn't really hurt but I think I scared mommy though. :-) Mommy is working on making my play area bigger. Pretty soon I'll be taking over the whole living room. :-) You just wait and see. :-) Goodnight everyone.

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Friday, June 6, 2008

June 6, 2008

Guess what everyone? I got myself rolled over today and actually got my arm out from under me this time so that I was flat on my tummy! Can you believe it? I have been trying for days and I just finally did it. Too bad mommy didn't have the video camera on but I don't like to show off too much for the video camera anyways. :-) This weather has sure been hot hasn't it? Mommy and daddy have the little window air conditioner on in the house but it still got to 86 degrees in here so mommy also had a fan blowing on me. It seems to help though so whatever works right? :-) Despite all the hotness my temperature has been pretty good. Mommy and daddy just gave me my bath so now I'm laying on the floor again with the fan blowing on me trying to keep cool. Mommy might have to get the cooling vest out tonight but we'll see. My sleep pattern got all messed up though the other day when I had my doctors appointment and everyone was keeping me awake. Last night I didn't go to sleep until 4:00am but I had a couple of long naps in the early evening. At least nurse Brenda was there last night but guess what...yep...mommy and daddy have me all weekend again by themselves so hopefully I won't be too bad for them. It's just that when I know they are up I like to party with mommy and daddy. Especially daddy since I don't see him all day like I see mommy. Although, I will have to say that I'm more of a stinker when I know daddy is staying up with me as opposed to mommy. I just like giving daddy a hard time. My suctioning has also been pretty good today too though for some reason. I haven't had to be suctioned a whole lot today. Well, I need to let mommy go so that she can hook my food back up 'cause I'm getting hungry and you don't want to mess with me when I'm hungry. :-) Later everyone.

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Tuesday, June 3, 2008

June 3, 2008

Hey There Everyone. We had a good trip down to Baltimore and back today. The traffic wasn't too bad and we made good time. Things went pretty well and they think I'm doing good. So much so that they really aren't changing anything and for mommy and daddy to just keep doing what they are doing with me. I got Dr. Levey though to write me something to give to my occupational therapist tomorrow who will then in turn give it to whoever she needs to give it to for someone from the state to come in and check my vision and see what I can see or if I'm focusing on anything and so forth. Once they do that and we know what I can see and things they have special toys and exercises and things in order to help me with all of that. Mommy asked Dr. Levey about my sleep issues and not really sleeping a whole lot and he said it is normal for kids with Holoprosencephaly (HPE) to have sleep issues. He said sometimes they use melatonin if there is more sleep happening during the day instead of at night which would help switch the pattern to sleeping at night but they don't really use anything for kids as little and small as me so right now it's just something we have to deal with and maybe as I get older I might develop a good pattern of sleep. It was great to see Elaine and Michele and even her mom today. Michele's mom is learning about traches and
G-tubes and she just happened to be there today and was talking to Michele and so we invited her in and got to tell her all about traches and G-tubes and all that wonderful stuff. Maybe now she won't be as scared. I hope we at least helped you out a little bit Michele's mom who's last name in Campbell like the soup. :-) All in all we had a good day and I go back to see Dr. Levey in December so we have a little bit of time before we see him again. Dr. Levey is very good at what he does and everyone is so wonderful down there at Kennedy Krieger. We appreciate each and everyone who is involved with David's care there. We want to thank you all very much. Well, I better let momma go and relax a bit since it was a long driving day. I think I'm going to go back to my play mat and just chill out and maybe catch a nap since I really haven't had one today. Goodnight everyone.

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Monday, June 2, 2008

June 2, 2008

MY NURSE BRENDA IS BACK WITH US TONIGHT!!!!! Hip Hip Hooray Hip Hip Hooray. I know that mommy and daddy are very thankful that nurse Brenda is back tonight. That means that now mommy and daddy can get some sleep. Although, it might take them a little while to get used to going to bed at night and staying in bed asleep since they have had a crazy schedule lately. And then again...it might not take much because I know they are both exhausted. I do love mommy and daddy though and they do a good job at taking care of me. I have been a good boy and haven't really been fussy or really have any temperature spikes or anything so that has been good. I just had my bath a little bit ago and am happy and content playing on the floor and just relaxing. I think I know how to get my way now when I want to be held. :-) All I have to do is just wrinkle up my face and make my crying face and fuss a little bit until I get picked up. I tried it over the weekend and mommy and grandma thought it was my gums bothering me because of my teeth because I do kind of the same thing so they put some orajel on my gums but I didn't settle too much until they changed my diaper and then I settled down completely. Hee hee hee hee. And today I started doing the same thing and I think mommy got smart this time so she checked my diaper and that wasn't wet so that wasn't the problem. She picked me up and started to rock me in my favorite position and guess what...you guessed it...I stopped my fussing. Mommy thought she was good though so she decided to try and put me in my swing since I was asleep and nope I didn't want my swing because as soon as she moved and started putting me in my swing I began fussing again and throwing my legs and not cooperating and so mommy held me then in the chair and as soon as mommy sat down guess what...yep...stopped again and went to sleep. :-) It's been such an entertaining day. Well, mommy has to clean up my room a little bit since Brenda will be back tonight so I will let her go and talk to you all again. I hope tomorrow (June 3) is good weather as we have to travel down to Kennedy Kreiger in Baltimore tomorrow.
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Daddy's little buddy

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Some Pictures

Oh the life!!

Me and my buddy Pumpkin hangin out on the couch.

How to have a bad hair day with not much hair.

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