Daddy and mommy have been trying to get me used to a stuffed animal and so daddy thought this was perfect for me...it is soft and has a lot of different things for me to feel.
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 29, 2009
Monday, June 22, 2009
This was my Father's Day card for daddy! Mommy and Aunt Roof and I had a day out on Friday and so we stopped to pick up daddy a card and mommy let me pick what I was going to give to daddy. Mommy even put the pen in my hand and let me sign daddy's card. It was fun and if you can't make out my jumble on the card is says that "I love daddy." And that I do.
Tuesday, June 16, 2009
How amazing is our God! Look at me would you? This is a video of me trying and learning to use my baby walker. Not too bad. I am also moving my arms feeling and playing with the toys on the walker. If you watch very closely there are two brief times where I do try to make the walker go forward. I know I still need a lot of work but this is a start and you just keep watching and see how much better I progress...I'll tell mommy to keep the camera rolling. Enjoy this one for now.
Wednesday, June 10, 2009
Hello Everyone. We just had another 6 month check up yesterday at Kennedy Kreiger Institute in Baltimore. I am doing well they say. I'm still growing good for my height and weight. I'm not too plump for some of you who think I'm a big boy. :-) The feeding me baby food through my tube seems to be working well and I think Dr. Levey was surprised how well it was doing too. He suggested though that mommy could start trying meats with me now as well. He said we can play around with the food. It's time though now for mommy to get some physical therapy going on just because I am becoming so much more active and things and it may help my muscles get stronger and develop better. Bring it on. :-) Also there is no rush he said but thinks it's also a good idea for me to start seeing an orthopedic to help with keeping my spine aligned and joints working properly and would probably help with my legs and how I don't stand or walk on my flat feet. He said they could set me up with an orthopedic at Kennedy Kreiger but not sure how daddy's insurance would pay for that if anything. I'm sure it will all work out though and we have some time so it's not like I have to do it today. He also ordered a test called a VCUG in which they will see about my kidneys and see which way things are going in there to see if I need to continue with my amoxicillin. I have a grade 4 reflux in my left kidney which can cause urinary tract infections and stuff and so I was put on amoxicillin when I was born as a maintenance kind of thing but haven't had any infections or anything praise God so we'll see if it needs to continue or if it's better as i've gotten older and might not need the amoxicillin. Now it's just a matter of mommy finding a hospital or place who specializes in doing pediatrics and let them do it. Again...no rush which is good 'cause it may take some time to find someone to do it but again...it will work out. Boy, mommy has her work cut out for her trying to find some appointments for me. :-) So, all in all it was a very good visit. We are also trying the Melatonin again in hopes to reset my clock to where I'm sleeping at night. He said that it may take 3 or 4 months to see a difference if it's going to work for me so we have until October now to see if the Melatonin will even help. I am praying it helps though. I slept good last night though! Although my pattern was all off anyways from being out all day so I think I was a little extra tired as well. Hope everyone is doing ok. Just thought I'd give you an update as to our visit at KK.
Wednesday, June 3, 2009
Mommy got creative yesterday when it was sooo hot out and I was getting very hot myself. Mommy would just leave me in my diaper but the only problem is I like to pull on my tube so sh had to figure out a way to cover it so I wouldn't pull on it. So...the first 2 pictures are the first results...mommy took a bandanna and tied it around my waist. Only problem...I liked to pull the knot and it wasn't very tight because mommy didn't want to get it too tight and so it fell off everytime I moved. So today...the last 2 pictures are the result of another step. Mommy had some velcro and used that and it seems to be staying a little better. It's a work in progress. :-)
Tuesday, June 2, 2009
I am still on the move. As you watch this video you will see about half way through that I am starting to do this new thing with my leg and stick it straight out and up. Mommy said the other day that if I could walk and get around she probably couldn't keep up with me. I ware her out now as it is. :-) As you can see too or may notice that by the end of the video I'm practically off my mat and just from my waist up was on the mat. I keep working on rolling over and one of these days mommy will have that video on here...you just wait and see. :-)