What's up everyone? Sunday was a pretty good day for me except for getting a little hot in church and so that led me to getting fussy and daddy had to sit out in the foyer with me. But the rest of the day was really good. Today, I have slept off and on and later this afternoon boy did I get hot. I went from like 94 to 99 degrees in a matter of minutes. So, I got another bath so mommy could try and cool me off and gave me some Tylenol and I am now on my play mat still trying to cool off and hoping to get some sleep tonight. I didn't let momma rest too much today. I kept her pretty busy. She certainly had her hands full today not only with me but daddy had to stay home today too because his muscles hurt and he could harldy move and mommy had to help him get back into bed and put his shirt on and finally she had him crawl down the hallway so he could be on the couch where mommy could tend to him and me. He is feeling a bit better this evening though so I hope that he continues to feel better and gets some rest tonight and wake up good to go in the morning. Talk to everyone later. Night Night.
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, March 29, 2008
Well everybody, I have been such a little hot box today. I was doing really great this morning and actually slept for about 7 hours last night. I woke up and was playing on my mat and then all of a sudden I got really really hot like 104 degrees and so mommy and daddy had to give me a bath to cool me off and then I had myself so worked up I kept throwing up. But, I soon settled down after I had my medicines and some Tylenol. Thank goodness. I'm waiting for my cooling vest to come and so that should help out greatly when I start getting hot especially come this summer when the temperature is hot anyway. I got to go over to grandma's today too so that mommy and daddy could do their grocery shopping. I was still a little hot when I went to grandma's but she held me for a few minutes and took my socks off and rubbed my leg and I was soon fast asleep and slept for a few hours. Then mommy and daddy came home and got to watch everyone play Parcheezi and of course pop pop bob had to win but mommy came in 3rd and daddy came in 4th. And yes, grandma came in 2nd. We just got back home and once again I'm starting to get hot so hopefully I will cool off and not get so hot again. Mommy did though get me some baby orajel today and just put some on my gums and I calmed right down. Hopefully these darn things will come in very soon. I will let mommy go now so she can get ready for bed. See you all later.
Friday, March 28, 2008
Hello there everyone. Sorry mommy hasn't kept up with this the past couple of days but I have only let her get about 4 hours of sleep total in the past 2 days! Aren't I sooooo nice. I have been not too bad though and have really liked hanging out on my play mat or in my swing. My temperature has gone a little high but not terribly bad the past few days. I have had to be suctioned out a lot too though but I think the weather has a bit to do with that. See, I told you that I have kept mommy busy as she has had to suction me and change my diaper and hold me. I'm still a little bit fussy too but again it's windy outside. I think I will let mommy hold me for a few minutes and then it's off to bed for her. She needs to go to bed early tonight. I do need some sleep too though as I have been up since 7:00am Thursday morning and haven't slept since then. It's been crazy around here. So much so that mommy was trying to keep herself awake today so she decided to clean out the refrigerator and wipe everything down! Ok mommy needs to get off here so I'll catch up with all of you all later.
Wednesday, March 26, 2008
Hello everyone. Today I kept mommy a little busy. I am still very cranky and fussy and so pretty much mommy had to hold me all day because that's the way I was most comfortable. I don't think she minded too much though. I have had a lot more gas today too but then again it was windy today as well so that probably explains a little bit of that. My temperature also has been pretty good today. I think I might be getting another cold though because my nose has been running an aweful lot and then I get junk in my throat. Mommy has to suction me out too when that happens but I haven't given her too much trouble with that today...I've been rather nice about it. Well, pray that I sleep tonight for mommy and daddy's sake. Oh, and by the way, my appointment with the reconstructionist is rescheduled for April 11, at 9:30am.
Tuesday, March 25, 2008
Today has been a pretty good day. My temperature has been really good today. My occupational therapist came to see me today and I think I just knocked her socks off! :-) She was impressed at how well I was kicking at my chime toys and how good I was holding my head up. I even put some weight on my legs for her and stood up on my legs for a little bit of time. For some reason though I have been a little more fussy today. Momma isn't quite sure what is wrong and I can't tell her so I guess she'll have to keep guessing. It has been windy this afternoon too so I think that has a little bit to do with my being fussy. Momma thinks I might be cutting teeth but I won't open my mouth so she can check either. :-) hee hee hee hee. I think I just need to tell her too that I am tired of laying on my back because every time she puts me on my right side I settle down and I like my tummy too. That's ok...mom will figure it out sooner or later. Mommy also got an appointment scheduled for me to see the plastic and facial reconstructionist doctor. That appointment will be back down at Johns Hopkins on April 1 at 8:45am. I hope I get some good news. Well, I just had my bath so I'm trying to settle down now on daddy's chest. It should be fun around here on Wednesday and Thursday because mommy and daddy have me all night long because the nurse will not be here Wed. or Thurs. I hope I can get some good sleep then especially for mommy and daddy's sake as daddy will have to work the next day and mommy might not get much sleep then if i don't sleep. I always keep them on their toes.
Monday, March 24, 2008
Well, I had my doctors appointment today and it was a very long day. I did pretty well in the car though and slept most of the time and was awake a few times too. My mommy had to climb in the back a couple of times to suction me out while grandma was driving. The ENT appointment went well. He said that my trache looks great and I don't need another size yet. I have to go back and see him in about 6 months so mom has to call in about 3 months to set up that appointment. I also have been referred to another doctor who does reconstruction and stuff so they can see about maybe reconstructing my nose and things in order to open up my nose to let me breathe through it. The ENT today seemed to think that I am in for a few surgeries throughout the next few years and it's going to be a long process. Mommy has to call tomorrow to set up an appointment for that and to see when they could start doing something. I'm not done growing yet so it could be another year or so before they could even start. We'll just have to take each day as it comes. My temperature has been good today and I haven't gotten too hot today. I'm now settling down on daddy's chest and having some cuddle time with my daddy so I will go now and talk to everyone later.
Sunday, March 23, 2008
Well, today is quite an interesting day for mom and dad because it is very windy today and when it is windy I tend to be more fussy and just uncomfortable and have lots of gas. I got several baths already because I'm hot. I will calm down soon though when I get cooled off and then mom and dad will have a break. I'm getting excited though to see some new friends this weekend. I can't wait to meet Bonnie and Ryan and Maria and Jake and Ben and Danny (the Demott Six) as well as Jessie and Jim and Diane and Jim. This is going to be a great Easter I can tell.
I had a pretty good weekend this weekend and met some new wonderful friends and they all loved me. Maria even helped my mommy give me my medicines. She did such a good job too. Jake and Ben gave me lots of kisses. I didn't sleep for mommy or daddy again on Friday evening so mom only had about 2 hours of sleep on Friday night. I just couldn't get comfortable and was just fussy and agitated. I was feeling a little bit constipated. I was awake pretty much all day on Saturday too but slept here and there for short periods of time. After being over at grandma's house with all my new friends I was asleep and so daddy let mommy go to bed Saturday night and boy was daddy in for it. I let him sleep for about 3 and 1/2 hours and then I decided I was just going to get hot and give daddy a hard time. It worked too because he was trying to get me to calm down and get me to cool off ever since 1:00am and when mommy woke up at 5:00am to give me my medicines she had to help daddy give me a bath and then I slowly started to cool off and settle down. I think that was because mommy gave me some Tylenol with my medicines to help bring my temperature down as well. I did cool off though and was ready to go to church then. I had a good day in church but slept through pretty much all of it. Pastor Mark has that effect on me sometimes. :-) Just kidding...Pastor Mark is a very good preacher. Gina Mackenzie held me in church again this morning. I think she likes me or something. After church I came home and we went over to grandma's again to have lunch and say goodbye to my friends until they can make it back down here. I got cold today though so most of the day I have been on the cooler side and so mommy and daddy have had me in warm clothes and when we got home they had me wrapped up in some nice warm fleece pajamas and fleece blankets. I finally woke up about 6:00pm and am hanging out for now. Mom and Dad will have to keep checking my temperature now though since I am awake and they don't want me to get too hot. Who knows...I might get to put on another outfit yet before bedtime depending on my temperature. I will get going now but remember I have a ENT (Ear Nose and Throat) appointment at Johns Hopkins tomorrow (March 24) at 1:50pm so they can tell me what they can do about my nose and maybe open it up and if so perhaps when they can do such a thing. He will also look to see how my trache is doing and all too. I will let you know what happens at the appointment.