I started this blogsite for so many reasons. I am horrible at keeping a journal, and I have had so much support I knew that this would motivate me to write about our struggles. I know one day John is going to struggle with all of this he is going through. I hope that he can read this and know that we have done, and will continue to do everything possible to help him. John maybe the one going through all of this, but he is not alone. This has effected the whole family, as well as our friends.
I do need to take a moment to write about my other child. Sometimes I wish I could see the world as a 4 year old. When this all started Sienna decided she was going to be a doctor. She worked on John "patient boy". She would carry her Doctor kit with her to every appointment she went to. I am not sure if she still has the desire to be a doctor after everything we have been through, but I did get my appointment the other day and was told to "stay still and be patient". Sienna and John are about as opposite as can be. She is a bit bossy, and helps me with keeping John away from things that he should not have. She so nicely takes things aways, and tells him "no brother, that is not a toy!" He pulls her hair, and she patiently tells him "don't pull my hair, that is not nice"! It brings me and Johnny a lot of laughs through out all of this. I don't know what I would do without her. As a 4 year old she is so helpful. The other night after putting them to sleep John got sick and started wreching bad. I hear Sienna from downstairs to come help brother because he is sick. There are so many times that I am helping her with something when I have to stop everything and run to John, and she is always understanding. When he is sick she sits with us to comfort him. She waits for me to hook John up to the feeding tube before she can get lunch or a bedtime story. She is truly an amazing little girl, and I know that all of this will just make her a better person in life. Little John is so lucky to have her in his life.

John went to see his doctor today. He is now weighing 24lbs 5 ounces! He has been feeling good. He got sick yesterday, but other than that he is good. We decided that we are going to wait for John to start preschool. Since I do not work during the day, and he doesn't have to go, it is best for him to stay with me. We are worried about him being in a germ environment. Everytime he gets sick it is such a huge set back for him. I actually wasn't looking forward to him going to school, I just thought it would be good for him. I will still continue to take him to music, tumble bugs, the park, and his play groups. I will just be the mom with the germ-x!
The other night Big Johnny took him and Sienna to the grocery store. They have two kid carts, and Sienna grabbed one like always. Well, I guess John started yelling, so Johnny got him the other cart. He had the best time ever pushing his cart around the store. I took him the next day to see myself. It was so fun to watch him (I think I might even take him back and video tape him!). He can't stop, or turn so he just crashes into everything, but he was so happy. He also doesn't bend his knees, so he has a bit of a waddle. He is so cute! Anyways, Johnny had the idea of getting him a pediatric walker. I talked to Doctor Kristi today about this and she thought it was a great idea. So hopefully it won't take too long to get this for him. I know he will enjoy some freedom. I would love to see where he would go and what he would do with one. I can't wait! Besides my back is so tired from carrying him around.
Not much else going on. We are all home tonight, so it will be nice to be with the family!

We have had a great weekend. Both kids went to a babysitting fundraiser at Sienna's preschool last night, so I was able to go out! Wow, it has been a while. Unfortunately, Johnny had to work. We all went to the farmers market, and then to the park today, which fun. Little John has had a good weekend. I have taken a couple days off of reading so that I could get it together. Our Dr. told me not to pay too much attention to those statistics, and that she believes John's symptoms are mild. Thanks again Kristi, you have a way of making me feel better. I know I have to take one day at a time. This disease is definitely a lot worse than I thought when I first heard about it. It is a reminder that there are no guarantees in life, which is why I can only take one day at a time.
Hope you all are enjoying your weekend!

Here is another article I found from the Boston Herald this is by far the hardest one I have read. There are some facts that I just was not ready for.
http://www.boston.com/news/local/articles/2005/10/02/suffering_through_a_mystery/

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.

I found this article about a baseball player in the nytimes. Very interested coming from someone who can talk about it.
http://www.nytimes.com/2008/08/07/sports/baseball/07baldelli.html?_r=2&sq=rocco&st=cse&adxnnl=1&oref=slogin&scp=1&adxnnlx=1222402646-q1jZYuaCi/38k4O5mIAteQ

Thanks for all the feedback on our website. This will be good for me to be able to focus on something. I know John has not been diagnosed with Mito, and I still have hope that he won't. I first read about Mito when we began the discussion about the G-tube. When I first read about it, it gave me chills. We still had so many things we had to rule out, and Mito was always the last thing on the list. After the last round of tests including the muscle biopsy this is the only thing left. I have learned that there are so many families that have become active in the Mito world that does not have a diagnosis. Part of the problem is that science has not found a way to either diagnose or rule out a diagnosis. Since this is the only thing left on our list, I feel like I can grasp the possibility of a mito diagnosis, and spend some energy on this cause. So even if we do not have Mito, I am still helping a good cause just by spreading the word.
John is feeling great today. We just went for a walk. He has a little walker that he loves to push around. He wants to walk so bad. When he is walking with his walker he is so happy he must feel so independent.
I did learn yesterday that Mito and vaccinations have nothing to do with each other. So we will continue to vaccinate. We have this wonderful new Pediatrician that I email almost everyday with something that I read about and am worried about. She has so much energy, and is educating herself on Mito. Thank you Kristi, for all you help!

My new website!

I wanted to start a website so that anyone and everyone can follow John throughout this journey. We still have no diagnosis, and it could be a while. We believe that John has Mitochondrial Disease. There are a lot of unknowns about this disease, which has made this road so difficult. I know there are so many of you that want to know what is going on with John, and I love that you all care. I will do my best to keep this updated as often as I can. We will have our ups and our downs, but this is our life. Everyone is invited, so spread the word. I want everyone to know how amazing this little guy is! Here is some info on Mitochondrial Disease. The more you all know about it the less I have to explain it to everyone. So please educate yourselves, and maybe you can help us learn as well.

Mitochondrial Disease Facts:
* "Mito" is a group of energy metabolism disorders that is as common as cystic fibrosis and some types of cancer.
* Mitochondrial diseases may be inherited or occur later in life from an unknown cause.
* Symptoms vary, but commonly include muscle pain and weakness, extraordinary fatigue, seizure, stroke, developmentaldelay or memory loss, and unexplainable organ dysfunction.
* Mitochondrial disease is largely misunderstood and under-diagnosed. Recent findings strongly support a link between mitochondrial function and the aging process, as well as diseases of aging such as diabetes, Alzheimer's, Parkinson's and cancer.
* Learn more http://mito.convio.net/site/R?i=b1WqxClGkbyLNH8vEdjvBQ..