Merry Christmas! Sienna woke up today with a fever and a cold, but we still had a great time opening presents. We are in Vermont with the family. Little John had fun. He opened a few presents. I was able to get the kids great gifts despite our lack of income. Johnny will have to wait for his present, but the kids are happy. I finally got a job at a restaurant in Downtown Boston and get to start tomorrow. I feel much better knowing that we will have money coming in. It will also be nice to get out of the house.
It has been quite a year for us. Since last Thanksgiving we have had our world turned upside down. Last year for Christmas we were in our new house, with a bounce house that Santa left, and all kinds of wonderful things. We had my family in town, and it was just the beginning of John's health problems. I remember last year going all out for x-mas because I wasn't sure what the future held for John. This year, I am just so thankful that we are all still here, and enjoying everyday we have together. How I have changed over the year. I have learned to take one day at a time, and to not stress about the little things. I have watched a 5 year old fight a brutal cancer, as well as a 3 year old who only has days left to live. We have lost our house, left our home, our friends, our jobs, and left behind most of our belongings. But we still have a roof over our head, plenty of stuff for us to keep track of, we are close to family whom has been so wonderful to us, and best of all we are all still here, and as far as I know, we all are in good health. Who knows what next year will bring us, but this year, we went all out as well. We got our kids some gifts, we are all here, and best of all we were able to spend another xmas with family! So this year I will continue to live each day as it comes, and be thankful for what I have, and not focus what I don't have. There really isn't anything else in the world that I need anyways. I hope you all enjoy the holidays. Merry Christmas!!!

I can't believe Christmas is this week. I have been busy looking for work all week. I think I finally found a place to work, but we will see. They said they would call me on Tuesday either way. I really liked this restaurant, and got along with the General Manager very well. The restaurant is called Pigalle, and is located in the theatre district of Boston. It is a French 4 star restaurant. I hope they offer me the job.
Little John had his eye doctor appointment last week, and it took 4 hours. It was so brutal. His eyes are as bad as the last doctor said, so he is wearing his glasses again. He is doing much better with them. We have to keep putting them on, but he seems to like being able to see. It has been snowing all weekend. We have gotten over a foot of snow. Hopefully Sienna will have school tomorrow. The schools closed down on Friday before it even started snowing. It was quite funny. John still continues to do good. He hasn't retched in a while!
We are going to Vermont for Christmas. I hope you all have a wonderful xmas.

Yesterday was my birthday! I am not normally excited about my birthday, but on Sunday I learned that since last year I had my age wrong and am actually a year younger than I thought! Isn't that great. I was laughing so hard I was crying as we kept doing the math. What a great b-day present, a year younger than you thought. Sienna is having a very hard time understanding that I am going to be the same age for another year. Just shows how long of a year we have had.
John is doing very well. I don't think he has retched for at least a couple of days. He is going to the eye doctor today. I am excited because we will be able to get his glasses prescription figured out, and get him wearing glasses again. I also have a interview at a nice restaurant in the next town over, so hopefully I get the job. Sienna's xmas list is growing, and our $$$ is shrinking!

We met with Dr. Holtzman yesterday. He is the mitochondrial/neurologist that we were going to visit before we moved out here. He was an excellent doctor, and was probably the first doctor to sit down and explain everything to me. He explained that John is obviously unique. He doesn't really fit into a "category" which is really just a label. He is special needs, and will need therapies and special schooling to help him with his needs. The only "fix" for him would be all of this. So basically putting everything from all our other appointments together, and explaining it to me. John is going to be a lot of work in life. He made me cry by talking to me about how to care for a special needs child, which meant I have to take better care of myself. Special needs children are a "burden" on people! Which I totally agree with although it is a burden that I wouldn't want to live without. So it is time to accept that my son is "special needs" with no exact label, he will need the best therapists, and special ed schools that are available for him. Which is why we moved to Boston. I feel lucky to have John in my life. There are people that can't even have children, or people that have special needs children that are very difficult. John may be special needs, but he is so sweet, and easy, and he has a lot of potential. So it is now time to accept this, and move forward. When John turns three he will be able to go to a school that will best fit his needs. This will be helpful to me because he will receive all his therapies there, and they focus on everything that I have been focusing on.
The one good thing is that the Dr. doesn't think John has mitochondrial disease! I am very relieved to hear this as I spent many nights unable to sleep because of this disease. I did learn so much about it, and hope that everyone will remember that there are a lot of children that are suffering from this horrible disease, and just because John does not have it we still need to know about it. They really lack funding and education for this disease, and I hope that if anyone was looking for somewhere to donate money they would consider mitoaction.org.
I have decided to go back to work waiting tables. I have a couple of interviews set up for tomorrow. We are so broke, that it is the best way for me to be at home with the kids during the day, and make some extra money. Eventually I hope to go back to social work, but it would not allow me to spend the time I need with my children, especially John. Working nights would also allow Johnny to focus on getting his realestate business going. The market is doing okay out here.

Here are some pics of the kids. John's appointment went well. I really like our pediatrician. She seems to have a lot of experience. She isn't nearly as personable as Dr. Kristi, but she should be good for John. It is absolutely freezing out, although it is supposed to get warm again tomorrow. I am already looking forward to the spring!

Tegan and Patrick got married this week at the Woodstock Inn in Vermont. It was such a nice wedding, and everyone had a blast. Congratulations Tegan and Patrick. Sienna was the flower girl, and mad the most beautiful flower girl you have ever seen. She played the roll perfectly, and then performed ballet for everyone while they ate.She was so good, absolutely so beautiful I could hardly believe she was my daughter.With Tegan stealing the show, I would have to say Sienna was runner up! Sienna's cousin was the ringbearer, and he to did such a great job. He took his job so seriously. It was a great wedding. Little John sat with me and pulled the brides maids hair through out the ceremony. Little John did good. He wanted nothing to do with the socializing. He just want to push his waker, and he is getting fast now. And the elevator is so exciting because when that opens he goes full speed plowing everyone over to get in so he can ride the elevator. Sienna took her job as a flower girl so seriously. She got her hair done, into a beautiful bun. Then did ballet for the girls that were watching while they got there hair done. Sienna is so fun because she is so opposite of me. She is so dainty, and girly, and I am well, we all know how I am. I know I am the mom and all, but I believe my daughter is going to be professional ballerina. Her teachers have all commented on how good she is. So as long as she loves it, I will support her the whole way.
So this week we have PT, OT, Appointment with the pediatrician to go over everything and a neurologist whom specializes in Mitochondrial disease. He was at the wedding this week and was watching him. We will see what piece of this puzzle he can add to all of this. I am excited to hear about his thought on John having Mito. If he says what Children's Denver said which was they do not believe he has mito, then we will take that and run, but then he may have something else to add to all of this. Who knows what will happen. I learn something new at every appointment.
We are still trying to find jobs. Starting to really stress about that. Johnny doing realestate, could be a while until we get any money, so he is trying to get a night restaurant job. I applied at Boston Children's for a PT social work job working in emergency situaitons, which I love. It would only be 2 days a week, but 20hrs so a couple of long days. It would be great for me though. We are trying to get things going. John's weeks are filling up quickly, and am having a hard time trying to figure out when I can work, and Johnny is out doing what he can. This definitely wouldn't be the ideal time to make a move and find new jobs. We weren't able to save money since we left so quickly, so now we are feeling the crunch. Oh well, all we can do is our best. I know we are not the only ones in the country that can't pay their bills. I just hope it isn't for long. Santa is going to go easy on the kids this year.
I will try to post some pics of the kids from the wedding tomorrow. Sienna looks like a perfect little flower girl model, and John he just wanted to get away with his walker. I will have more to say this week as things are getting busy with John.!
I hope all is well, It was nice seeing all the family this week. It made me feel like our move was a good one. All my other family and friends, Well, I just really miss you all and wish I could have brought you all with me. I love and miss you all!

I hope you all had a great Thanksgiving. We went to Stowe, VT and spent the week with the family. We had a great time. Now we are back looking for work, and trying to finish getting things set up for us here. John had his GI appointment today. We spent 7 hours at the hospital. We learned how to change his g-tube, and talked about his feeds, retching, and some meds that we will try if the retching doesn't get better. They want us to vent him more often, to see if that is what might be causing his retching (that is how we burp John, through his tube). We decided to take him off his two meds he has been taking. I didn't give him his meds while he was sick with the flu last week, and haven't given them since. I don't notice any difference, so we are going to stop the meds. I don't mind giving John meds if he needs them, but we have been giving him a lot of meds not sure if he needs them. So as of right now we are not taking any meds besides his nebulizer. We will go back in 6 weeks. John also did his sweat test, which is a test to see if he has Cystic Fibrosis. We are so proud of him for passing this test! Another illness to cross off our list. It was a long day, but we were able to go sit down and have lunch, while John took a nap on the booth. He is the kid that will sleep anywhere. I also gave blood today, which made me feel good. You spend a lot of time at the hospital and you wish you could do something for these kids. So I had some spare time and donated blood. Sienna spent the afternoon with her Gamma Dude. Not much else going on. John has an appointment with his therapists on Wednesday, and then two doctor appointments next week. Once the therapy starts, we will be going 5 days a week.