Friday, September 26, 2008

It is so georgous out today. The kids and I went to the park. There were so many other kids there. I guess we are all trying to get in as many days at the park before the snow comes. When John had his g-tube put in we also did a nissen wrap because he vomits so often. Over time his vomiting has gotten worse. Now that he has his nissen wrap he still gets sick, but he does not throw anything up. So the poor kid wrenchs. We were having a pretty good day, and then John got sick and started wrenching. We were admitted last week at Children's hospital so that they could observe him. They basically told us that there is nothing that they can do about this, and that science would have to catch up with him. They changed his formula, which has helped. It is just so hard to watch you child get sick so often and do nothing about it. I wish I could help him.

Yesterday when I got to work the owners of my restaurant (Matt and Dana Smith), had told me that they wanted to do a fundraiser to help raise money for the cause of Mitochondrial Disease. They had already begun to talk to other restaurant owners and are trying to get as many restaurants to join them. I was so blown away that I didn't even know what to say. I knew if I said anything I would just cry. I have always enjoyed being a part of fundraisers, but never thought that we would need one to help my son. Matt and Dana, Thank you so much for caring so much to get this started. So please keep an eye on John's blog about our upcoming fundraiser.
Whether John has Mito or not, this will help John and many other people that are unable to get a diagnosis. There is just so much they don't know about this disease.

1 comment:

Unknown said...

Hi Jenny, John, Sienna, little John (and Jasmine)! I just got the chance to sit down and check my personal email. Thank you for sending me a link to your site. I think it's a great way for you to communicate and a great outlet. I was unfamiliar with Mito until today. Although it's difficult to read about, I appreciate you sharing these articles and educating all of us on this disease. You are such a strong, beautiful family and I have a great deal of respect for what you have been through and will continue to fight for. Although we're neighbors and barely see each other, you are all in my thoughts daily and I'm always here. Thanks again for the information. love, Jaima