I hope everyone is doing well after Thanksgiving. I am thankful for my mommy and daddy and really for still being here when the doctors said I wouldn't. Thank you Jesus. It's hard to believe that I am 16 months old. I know mommy and daddy are truly thankful too that we are a family and we have our tough times but we also have our good times. You can actually pray for me as you think about it because I have been having a few more seizure activity lately which has been keeping daddy and mommy very very busy at times. I will have my blood check here probably next week in order for them to do a Phenobarbital level to see if that seizure medication needs to be increased a little bit because of me growing. Seizure medicines are dependent on weight and since i have gained a few pounds it might be time to increase that. That's one reason they don't want me growing too big too fast. Along with the more seizure activity it is making me have my little "pass out" seizures more often as well as causing my tummy to kind of contract and stuff which is making me throw up which is also keeping mommy and daddy busy. Hopefully we will get this all straightened out soon though. I go down to Johns Hopkins on December 4 in order to have my trache changed to the next size up. And then the following week I got down to Kennedy Kreiger in Baltimore so we a few busy days coming up next week. All in all though things are going well and I am still liking my new swing bed very very very much and it really does help calm me down a lot. Well I will run but I will talk to everyone 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.
Friday, November 28, 2008
Saturday, November 22, 2008
This is my new comfy arms reach baby motion bed. It's kind of like a hammock type swing and it's supposed to help with fussy babies who have colic and gas and acid reflux and helps babies who don't sleep for long periods of time. From the first time mommy has put me in here especially to go to sleep I have not been quite as fussy and it is very comfy. The first night in it I slept more than my normal 2 or 3 hours. I think I slept about 4 or 5 hours and last night I slept about 4 or 5 hours in it too. Maybe once I get more used to it and know that when I'm in it it's time to sleep then maybe I might sleep a little longer. And sometimes when I'm just really fussy and gassy and just squirming around mommy will put me in my swing bed and I settle down considerable. I might still be a little fussy but not like I would be if I were out of it. :-) Mommy has also been trying to put me in it when I'm looking a little sleepy and it's either nap time in the afternoon or at night when I'm ready to go to sleep and I'll fuss sometimes for about an hour or so until I put myself to sleep but again it's not near as bad as it was. Mommy says that I look so much more relaxed and calm and even when I'm sleeping in it I look so much more content and peaceful. I want to say a BIG BIG BIG THANK YOU THANK YOU to Aunt Bonnie and Uncle Ryan for thinking of me and mommy and daddy and getting us this swing bed. It has been very helpful so far. So again thanks Aunt Bonnie and Uncle Ryan. We love you guys and appreciate what you have done.
Thursday, November 13, 2008
Hi Everyone. I had my 15 going on 16 month check up today with my pediatrician. She says I am doing well and today I was wide awake and very active for her and I think she was amazed. :-) I am growing well and I now weigh 15lbs and am 25 inches long. Pretty cool huh? Mommy will put a picture on so you can see just how long I am getting. I did have to get 2 shots today though and one of them being the flu shot. I am not very nice to mommy for about a week or so after I get shots. :-) Although I think these are having the reverse effect on me because usually after I get shots mommy gives me Tylenol and then I usually fall asleep for a few hours and usually sleep pretty well that night. This time mommy isn't so lucky. :-) I have been awake and very active despite the Tylenol and have not gone to sleep yet. Hopefully though I will sleep tonight. The one shot that I got since I have a seizure condition I am not supposed to have it but I had already had one and the pediatrician thought that I really should have another round of it because I didn't do to badly with it before so I guess she figured that the good of the shot outweighs the fact that I might have a few more seizures for mommy and daddy for a few days or so. It hasn't really been too bad though for mommy and daddy but like any little baby I just am uncomfortable. But you probably couldn't tell by looking at me because I have been smiling and playing and very active since I have had my shots today. Again though...I do hope that I let mommy get a little bit of sleep tonight. All in all though I am doing well and growing the way that I need to. Well, I need to let mommy go so she can get my food ready to hook up so I will talk to everyone later.
Monday, November 10, 2008
Hello everybody. Boy do I have some exciting news to tell everyone. I got to go to church with mommy and daddy yesterday and I really had fun. I was in a good mood and smiling and laughing as well as I admit giving mommy and daddy a hard time during service by being very very active. So anyway, at one point mommy put me on the chair next to her since it was empty and since there is a little bit of a gap between the back of the chairs I reached my hands through there and grabbed a hold of it and was pulling myself along the chair. Mommy thought for a minute I was going to end up in the lap of the lady the next chair over. :-) And then this evening the lady that works with my vision came over and was working with me again and you won't believe what I did. Mommy and Karen (that's the ladies name) had me on my tummy working with me with the lights and things and I was doing great at pulling my head up and actually holding it up for a little bit. Well, after a few minutes of that I decided I wanted that darn light and so I was trying to move towards it. I was trying and trying to get my legs under me to try and crawl to get it but didn't really get there and then mommy and Karen just kept working with the lights and by cracky I was bound and determined this time so guess what...I actually had my legs up under me CRAWLING toward the light. I only moved just a little bit but I actually moved myself!!!!! As I was doing it mommy had to get daddy to come see and let me tell ya...it was a very exciting time for mommy and daddy and me this evening! I am doing well with my vision exercises and things. If some of you don't remember I have what's called CVI (Cortical Vision Impairment) and so I can see but can't really focus on things or see people like normal. I might see shadows or little movements and things like that. But with different exercises and things with red and yellow lights I can learn to use my vision better and so now like trying to crawl and go after things is a great stride in learning to use my vision because now with the lights I have something to "move" towards and want to go towards. Who knows...with more work and stuff I might even get to the point where I will be able to hold my head up more on my own. So again, we have had a really exciting night and Karen is pleased with my progress. The Lord continues to work as He is allowing me to do some little 'baby' things that the doctors never thought I would even do. Mommy and daddy thank the Lord for each and every new day and some of the new exciting stuff I'm learning to do. I may have a lot of "issues" and things and may take more work to accomplish something small and simple but the Lord has allowed me to do so. The Lord certainly is great!
Tuesday, November 4, 2008
Hi Everybody. Sorry it has been a while since I have written last but things have been busy around here again. Mommy had to have 7 teeth taken out last Thursday and boy was that a trip and a half. I saw her right before she went under and I was laughing at her. I know, that's not a very nice son but it was my way of wishing her luck and that I hoped she did ok. Boy, it was fun on the way home too 'cause grandma had me to deal with as well as trying to keep mommy awake but mommy doesn't remember half of the trip home. Daddy had to stay home on Friday in order to take care of me because mommy couldn't. We made it through though but I sure did miss mommy and I could tell she didn't feel well. She is doing better now and a lot of the swelling has gone down but you can tell she is still uncomfortable but is doing a good job at still taking care of me. And today Aunt Roofie had off so we ran some errands this morning and then came back to bake some cakes. In the meantime I had thrown up in the truck and then as soon as Aunt Roof sat me down in the house i threw up again and so I had to get all cleaned up and a bath before mommy and Aunt Roof could even bake a cake. And then to top it all off...while suctioning me out from time to time and trying to bake a cake they had a run in with a mouse. You should have seen the two of them. They finally trapped it and threw a bowl over top of it and then gingerly slid the mouse with the bowl on top of him to the steps that go up into the kitchen and mommy had a bowl full of water so that Aunt Roof could slide the mouse over to the step and then plop in the water. This was grandma's idea. Well, success...they did it and put the lid on the bowl and set it outside until the mouse had drowned. Way to go mommy and Aunt Roof. And then to top it off when Aunt Roof left and daddy had gotten in the shower this evening low and behold mommy go another mouse on a glue trap and so she had to put that one in a grocery bag and tie it up and throw it in the garbage can. And now we hear another one running around in the kitchen so hopefully we will get that one too soon! See, I told you it has been fun and crazy and busy around here lately. Hopefully soon I will have some new pictures for all to see. Take care everyone.