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.
Thursday, July 28, 2011
Hi there everyone. Just giving a little update as to what has happened and what will be happening. I turned a big 4 years old on Wednesday! Quite an accomplishment to say the least! On Wednesday I had an appointment with my neurologist to talk about a new form of therapy for my seizures. I am not doing well on the medicines and have basically "failed" two or more seizure medicines they have tried. So since that has happened we still need to find a way of controlling my seizures. This new form is called Vagus Nerve Stimulation. It is a little pacemaker type gadget that will be inserted in under my left chest and then an incision in my neck so that the wires can be threaded through and wrap around the vagus nerve in my neck. It then will basically send little electrical signals to my brain through way of the vagus nerve and stimulate that nerve in order then to help control more of my seizures since again the meds are not working. If we don't go this route then there are just a few other meds we can try but they have more harmful side effects as well as we are now very limited to just a few because of how it has to be given through my feeding tube. This new VNS therapy will require surgery and that is kind of scary. There is just a lot to think about and think of where we go from here. Within a week though we should meet with a neurosurgeon and he will explain surgery in more detail and if he even feels comfortable with doing such a surgery on me. After that meeting if it's a go and that's what we lean toward then surgery will be scheduled shortly after that. God is good and He holds tomorrow in His hands. As a wise person just said to mommy today that this is where faith has to trust that God will ALWAYS ultimately be in control! So we have to step out in faith and see where God leads.