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.

We are all recovering from our sickness. Little John was doing a lot better today. He is still retching a ton, but is getting his "spirit" back. Johnny got here last night, and we were are officially moving in. It is nice to get the kids toys here. I had packed toys for John, but not many for Sienna, so she required a lot of entertainment the last couple of weeks. It was good for her to get her stuff. She is definitely acting out now. She keeps asking when we are going home. I have talked to her so many times, she just doesn't understand, which is so hard. I know she will adjust, she just has to pour a little salt on my wound! Today she started crying about a stuffed animal, and was yelling at me telling me she was the boss, and then told me to go to time out. We then just started laughing, and hugged and kept laughing. What do you do? We don't have any appointments this week with the doctors, so hopefully we can stay away for a while. We are meeting with our new therapists this week. I am anxious to get his therapies set up. Speech therapist at the hospital is going to be really good for him. They sign while the whole time they are with him, and he seemed to really be watching them. He learned a new sign this week to throw his arms up in the air for "yeah". He even makes a noise that goes along with it. The other good thing, is Sienna's preschool teaches them sign language, so she has been learning new signs as well. I am very happy with everything that has been set up for the kids. We are definitely making the most out of everything.

The week has just gotten worse for us. John had his ENT appointment, and passed his hearing test! They checked his adenoids and his tonsils, and they are both fine. We did get a referal to an allergist. We have seen an allergist, but John was so young, they didn't test him for much. John has been retching a ton, and by Friday we headed too genetics, but was so sick we had to cancel and go to get checked by our doctor. He had another chest x-ray which still showed that he has a lot of mucus in the lungs. The doctor is thinking he might have a lung disease.? We will look at this in January with the pulmonary specialist. For now we have to keep his nebulizer going. We assumed had a virus so we went home, and started the pedialyte. We were supposed to take him to ER if he were to get a fever, but luckily we did not get a fever. Yesterday I woke up with a horrible stomach bug, and by 9:30 Sienna was projectile vomiting all over the place. So we are recovering today. Johnny is supposed to get in town in a few hours. Just in time for us all to be feeling better. I wouldn't want him to get this after all he has been through this week, but it sure would have been nice to have a little help. We are now recovering, and hopefully won't have anything like that again! I hope you all had a great weekend.

I haven't been writing everyday because I really don't have much to say, and don't want to bore all of you. John had his meeting yesterday, and we will meet with the therapists next Wednesday. Today I took Sienna to school, and came home to do some laundry, and picking up. I went to fold laundry and noticed my car was gone. I looked outside, and was so confused. Who would want to steal a dodge Caravan? Johnny helped me figure out they do street cleaning on every third Wednesday of every. So my car got towed, and I had to pick Sienna up from school. I had an hour and a half, so John and I hiked to the next town to catch a bus (his stroller was in the car, so I had to carry all 26+lbs on my hip). With the help of some random men on the street they helped me find the right bus to get on. I got on the bus and realized that I barely had $1.50 because I gave Sienna's school all my cash for pizza day. So one of the men told the bus driver where I was going, and the driver felt bad for me so he didn't even charge me for a ride! So we got on the bus, trusting the bus driver to get me where I needed to go to find my car. John fell asleep, and sure enough the bus driver dropped me off almost right in front of the tow company. $85 dollars later and a $30 ticket, I got my car back and was able to pick Sienna up just in time. Her new school charges for every minute you are late. So that is what I got to do while Sienna was enjoying her second day of school. All I could do was laugh at myself.
The next two days we will be at the hospital. We have an ENT appointment, and then Genetics on Friday. He has been retching the last couple of days. Not sure what is going on, but we will get checked again.
Also my friends Kim and Ben Dunn had a baby last Friday. She had to have an emergency c-section because the baby's heart rate was dropping. The baby had the umbilical cord wrapped 6 times around its neck, and had to be flown to Grand Junction. The baby possibly suffered brain damage, and they are waiting to find out the extent. So please keep this family in your thoughts and prayers. They have been a huge support to us throughout Johns whole medical road. They have a 2 year old that was always so interested in being friends with John. They were told the baby only has a 10% chance of normalcy, so lets hope for that 10%!
Hope everyone is having a better day than we are!

We are having fun! We went to the Children's museum yesterday, and the Aquarium today. John is doing good. He enjoys the museums because there is so much room for him to walk. He pushes his walker the opposite way of me and tries to get away. Today at the aquarium he was "talking" to the fish as they swam by. He just makes noises, but he is still trying to talk. We are meeting with early intervention this week to get his therapies set up. He also has a genetic and ENT appointment this week. I was hoping Johnny would be here, but it doesn't look like he will be here until next weekend. I left him with an entire house to pack. Sienna will finally get to start school on Monday. She is starting to get a little emotional. She cried for her daddy tonight. She still thinks we are going back to CB. Now matter how I try to explain it, she just isn't getting it. I think school will be good for her. We spent a little time there on Friday, and the kids seemed to be a lot of fun. I think she will adjust. Hope everyone is having a nice weekend!

Sorry it has been a few days. I have been having trouble with an internet connection, and I really haven't had much going on. John had his pulmonary appointment today. He had a chest x-ray which showed that he has a lot of mucus in his lungs. They also didn't sound clear, so he is on a steroid to clear up the mucus, and a nebulizer 2-3x a day. So we got a new machine. John also has to do a sweat test which will officially rule out cystic fibrosis. It is a very easy, non invasive test, so it will be something to check off our list. He also has some upcoming bloodwork to do, but we are waiting to do it with other bloodwork that he will probably have to do after meeting with our other specialists. It was a very long day today. Sienna got her flu shot, and was supposed to get blood drawn for a lead test, and another test that she has not ever gotten done. At 4:30 we had to stop to eat lunch, and were not able to do the bloodwork. So we will get to go back in the morning. Gamma Dude helped me today. Thanks Dude, I can't imagine what my day would have been like with no help. Again, I feel really good about being here. I know John is in good hands, and everyone is determined to help us find some answers. Hopefully I can get Sienna in school this Friday, so I can get some of this done without her. She has been such a great kid these last two weeks. I hate sending her off to school, because she has been so much fun to have around. I know she will enjoy meeting some new kids. She started ballet the other day, and met two girls. So she is happy to say that she has two friends already! All of our spirits are high. I decided this move is going to be what I make of it. So we are going to have fun. I hope you all are well. Johnny is in CB and is going to be moving this weekend. I will be sending out an email looking for volunteers to help him move.

We had a great day today! We went to the Children's museum, and had a blast. We only saw about 1/3 of the museum. John spent most of the time walking, but found the water table and got soaked. I had to change him there. Sienna was so busy the whole time, I almost lost her a couple of times. We are still getting used to the city life. Here is a picture of the kids watching tv together. They are tired after spending the day at the museum. John fell asleep on the way home, and then woke up. I am having a hard time getting him back on his schedule. He slept in today until 11:00!

Our first appointment went well at Children's today. John is in the rainbow care program for kids with special health problems. We met our new pediatrician, and the nurse PA that we will be seeing. I have 11 specialists to set up appointments with not including the therapists. We have a new department pulmonary. John's O2 was low, and with his history they want him to be seen there. After we see the first round of doctors, we may be referred to an endrocronologist. I feel really good about our decision to move here. I decided John will receive all of his care out of Children's. This is best because they all work together under one network. It is easier than having to transfer files around, and I do not want any tests being repeated on him. As soon as our insurance is approved, we will transfer all of our medical supplies to Boston.
Sienna will get to start school next week. I have to get her a lead test before she can go. They are very strict here in Mass. You don't have a choice on vaccinations either here, which also makes me feel better about John. We just can't take any chances with him being exposed to any illnesses. We found another ballet school today. I was not to happy with the first two we looked at. One was too serious, and the other was not very organized. I found one that does ballet and tap, and she is going to start on Tuesday! I have done a lot this week getting things set up. I am staying busy, and keeping my head up. Like I said I feel good about being close to Children's.
Johnny leaves to go back to CB tomorrow, so I will be single mom for a few weeks. I still have a lot to do, but feel like I got most of it started.

John has been doing good! He has not retched for 2 days. I was able to get insurance set up, and we are going for our first appointment at Children's tomorrow. I have not decided if we want to go to Children's or Tufts Hospital, so we will start at Children's. There is so much that has to be done with him.
We found Sienna a school today. It is only a mile away, and she seemed to like it. I am going to try to get it all together so she can start next week.
Everything is coming together. I still have a lot to set up here, but feel like I am making a lot of progress in a week. We are having fun, and staying busy. Hope you all are well.

We made it! It was an absolute nightmare flying with both kids. The kids were great, but I had so much stuff to carry on the plane, it was rough. John is still doing well. He only retched once today. He has been very happy, and seems to be feeling good. We are all adjusting to our new home, the time change, and everything else new. I went to Children's today to work on getting insurance set up. I should have it going by tomorrow. Sienna and I looked at ballet schools this evening. We rode the subway to one, and the other one is across the street. I think I am going to go for the one across the street. She gets to try it tomorrow and see if she likes it. We haven't even looked at schools yet, but will.
Sienna told me today that she loves the city! Her uncle left his bearded dragon (lizard), so now she has a lizard. He is pretty cool, and Sienna thinks he is great. She fed him lettuce all day. He sleeps at the foot of her bed, so she doesn't have to sleep alone. How exciting!
We are slowly getting moved in. I will feel good when I have insurance, therapy, and doctors lined up! I was turning towards children's hospital, but now am thinking I might check out tufts university tomorrow! It is much closer, and has the Mito doctors that I have looked into. Whether he has mito or not, I think they will be a great start. So I will look into Tufts tomorrow and try to decide. Children's hospital is located right next to the hospital Sienna was born, and it is tough to drive out there. It cost me $11 just to park to go talk to a social worker. So I am checking it all out and trying to make a decision. I do not want to change doctors anymore than I have to, so I hope to pick a place and stay.
I hope you all are doing well. I will have a busy couple of weeks, and will continue to update the blog. It is georgous out here. The trees are still yellow, and beautiful. It is still pretty warm here. Other than the driving, things are going great!

Sienna made it to Denver. We are watching cartoons, and relaxing. She had a very busy couple of days before she left, and is now wooped! From the sounds of Sienna's last couple of days, I am thankful I got out of saying goodbye with her. Johnny said it was absolutely brutal saying goodbye to her teacher, friends, neighbors, etc. She told me that she is so sad. I think it is all hitting me now. We sure are going to miss CB and everything,and everyone that comes along with it.
On a happy note. John got his walker! He absolutely loves it, and is all over the place. we went to the mall so he could have space to walk. We had so much fun. He was checking everything out, and he had his Donald Duck costume on. As soon as I get my computer hooked up I will post some pics. He is doing better than I thought he would do with the walker, and he is sooo proud of himself. He found the carosel at the mall, and kept checking it out, so I took him on it. He cried the whole time with his lip out and his eyebrows wrinkled. I never thought I would be so excited to have my kid walking!

Happy Halloween! I wish Sienna was with me today. I love halloween, and we had so much fun last year, I will miss trick or treating with her. John is still doing well. He has retched a couple of times, but is doing so good otherwise. His walker finally came, and we are going to work on walking after his nap. Sienna is coming down tomorrow. I can't wait to see her. I have had a lot of quiet time without her though. She has so much energy, she is just like her dad. I was even able to start reading a book. Hope you all are doing well.

Well, we are now in Denver, and John is doing awesome! We both feel better. I am so sorry to those who I didn't get to say goodbye to. John was doing so bad, and everyday was getting worse. We are staying at a friend's house (Dougie's) and Johnny and Sienna are coming down on Saturday. Me and the kids will fly out on Monday. Johnny and his friend are driving to Boston. Of course we don't know if the elevation is John's underlying condition, but I know that he is feeling a lot better down here. I am at Children's right now transferring medical records, and dropping of our oxygen. I am not sure when I will be back on the internet, but as soon as I am I will update the blog. Thanks again to everyone for your ongoing support. I am sorry I had to bail so quickly, but I just couldn't make John suffer anymore.

John continues to struggle. I am leaving with him in the morning for Denver. I just can't put him through any more suffering. Johnny is driving to Boston on Saturday, so he will be able to bring Sienna down with him. I really want her to finish her last week of school, and have halloween with her friends. Unless John starts to do great, we will be in Denver Monday. I canged my flights again to Nov 3. So here are some pics from the party. I am so glad we were able to see a lot of our friends before we had to leave. I had so much fun. I think my highlight of the night was Dr. Kristi in the bounce house with all the kids!

John finally had his party yesterday, and what a party it was. We had so much fun. The hardest part of leaving CB is our amazing friends we have here. You all have been so supportive, your help, letters, gifts. I can't even express how thankful I am to all of you. I wish I could take you all with us. I am going to miss every single one of you.
John did okay at his party. He didn't get sick until the very end, and then walked his walker in and outside over and over. He is now turning his walker, and his is so much more independent now. I love it. I can't wait for him to learn to walk on his own. My life will change, but I am so looking forward to it.
I will post some pics from the party. I am trying to get organized so I can get packing. I have been on the phone half of the day getting everything ready. Thanks again to you all for such a wonderful party. I know I will make new friends, but am not sure if they will ever compare! I love you all.

Here is a little video of John "thriving" in the city. This is his little aligator walker, and he loves to push it around. He even learned to turn it while we were there.

Unfortunately, since we have been back he has continued to retch. He will not allow the oxygen tube on his face and in his nose, so I lost the battle. We do have it going right next to his face, and I even learned a trick at one of our hospital stays to put the end in a dixie cup so it blows in his face!

With John proving that he does not do well here, we are now leaving for Boston on November 3rd. I booked our flights today for the 4th. I have so much to do before we leave, but don't even know where to begin.

Where to begin...We just had the best three days in Denver. John did not retch once! We spent the day yesterday at the Nature and Science Museum. It was almost like a vacation. We went back to Children's and had Johns Gastric empty study, and then met with our special care physician. After two visits to Denver, and feeling great while John was there, we questioned our environment. Our doctor helped us determine that John cannot live at high altitude. She put him on oxygen until we can leave. Half way home I got a message telling us his GI test showed "mild delay in digestion", and we will put him on a med that will help his stomach empty. The doctor that ordered the study will call us with more details. That is all I know about that.
John is not very excited about his oxygen tube he has to wear. We fought the whole way home, but he kept pulling it off. When we got to the top of Monarch Pass he started feeling nausea. Then the second we pulled in to CB South he was nausea again. By the time we got him in the house he was retching within minutes. He is now sleeping with his oxygen.
So with all of that, we are leaving for Boston sometime next week. We will have a very busy week trying to pack, and hopefully the oxygen will help John get through this week. I am working on flights, and will plan to leave the 2nd or 3rd!
I don't think this is the underlying problem for him, but who knows. Once we get him to Boston, we will see what happens. We obviously will continue seeing doctors, therapists, etc. We are so overwhelmed with all of this and having to move a month earlier than planned. I don't even know what to do next. I will continue to update the blog.

We had a pretty successful visit today. None of our doctors were around, but we are set up to see his special care physician on Friday. He will also receive a gastric empty study in radiology to see if his stomach is not emptying correctly. They did not see anything wrong with his g-tube, so we didn't do anything about that. I am on a computer which is hard to type on, so I will be short. I will post another update on Friday after we get home!

We had a rough morning, but seem to be doing okay at the moment. We head to Denver tomorrow, and we will see what happens. We will check to see if his g-tube is causing him problems, and if it is we should be done. If it is not the g-tube causing his wretching, then we will have to look further. I always pack for a couple of days just incase we have to stay. I have tried to get a hold of his Denver doctors to get them to look at John. We don't have appointments with the specialists until next month, but I just don't think he can live like this for another month. So I will keep the blog updated as best as I can. I normally can find a computer somewhere. Not much else going on. Just trying to get John through all of this. Hopefully, we will be able to solve his wretching problem!

Well, we finally have someone to see us at Denver. We are going back to Children's on Wednesday, and hopefully someone will help little John. He still continues to wretch. I learned that he can out grow his g-tube, so maybe that is what is making him so miserable. We have to have it changed every 6 months, and it has only been 5, but just maybe this is what is causing him to be so sick. I just don't know how much longer he or I can take it. All he enjoys doing is watching tv, but that is just not okay. He tries to play, but he gets sick, so we just end up putting the tv back on. I really hope that someone can help us at Children's, because if they send me home again with nothing, I am going to loose it! I called today and got a patient representative to help. I am not sure what she can do, but getting anyone and everyone to help may possibly get us somewhere with all of this. I never thought that navigating the health care system would be such a challenge.

We made it to the river! John wretched half of the time we were there, but he still had fun. He is doing a little better today. I keep thinking we are getting better, but then we have a bad day. I am crossing my fingers that we are getting better, and we will stay better! Sienna finally got the hang of riding her bike, so her and I went for a ride today. We were doing very good until we steered the wrong way and rode off a two foot wall of rocks. I thought we would have to bother the doctor again on a Saturday. She was okay though, and we went back out to ride after we took a break! I have one more week of work, then I plan to begin packing. Johnny is going to drive our first car out to Boston November 14th. I still can't believe we are moving to the big city.

HAPPY BIRTHDAY TO ME!!!

I was trying to take a picture of him today, but so far he hasn't had a good day. So here is one I took a couple of weeks ago. John is still wretching a ton. I gave him his anti nausea med, and he has been asleep since. Hopefully he feels better when he wakes up. I wanted to take him for a walk to the river today. He loves to go watch the dog play in the water. I feel like there isn't much to do for him on his bday. I would bake him a cake, but he wouldn't touch it. I would even take him out for lobster if he was interested. We got him some gifts of course, and will give them to him today. Hopefully he starts to feel better!

I think we are finally feeling better. We have only wretched once today, and John has been playing with me. We are still taking it easy, but it is good to see his smile again.
We are leaving for Boston on December 4th, so we will get to have Thanksgiving in CB! We already had plane tickets, and I could not get them changed. We found someone to rent our place on December 1st so we will be in limbo for a couple of days, but that is okay. We are still not sure how we are getting the cars to Boston, but somehow we will get our cars and our belongings out there. Now that John is starting to feel better, I can start to focus on the move again.
Hope you all are having a great day!

I wish I could say we are better, but we are not. John's wretching is so bad we went back to see Dr. Kristi, and he is now on anti nausea meds. Fortunately, he lungs sound clear, so we took him off the antibiotics to help his upset tummy. I don't know how this kid can do it, but he is so much tougher than I ever would be.
I emailed our doctor in Denver to ask what is going on with John, and explain to me why we keep getting mixed info on him. She explained to me that the truth is that no one knows what is going on with John. They have done every test and they have all come back normal, which does not help them understand what is going on. So like I said, it puts us back to where we were before, with no answers.
She did comment on how excellent Dr. Kristi is. As I already know this I just wanted to share this with everyone! I know she will not be able to give us a diagnosis, or fix my little guy, but she sure does a great job of making us feel safe, and making John as comfortable as possible. We have been to her office more than I could count, and she always makes time for us. I personally don't think I could have made it through this without her. As crazy as I probably am after all of this, she doesn't make me feel that way, and is always welcoming to us to come in and just check our stats. I think she is the best doctor we have seen for John, and we are sure going to miss her when we leave. I do have to say that the moms in this town are so lucky to have a pediatrician like this. You will never appreciate a doctor like this until you are sick and in need of extra help. Like Sienna said "her's the best helper in the world!"

John is slowly feeling better. He is still wrenching horribly, but other than that he is slowly recovering. I don't know how I feel about the Dr. from Denver saying that they don't think John has mito, and he probably has a chromosomal deletion. It just puts me back to where we were when this all started. We have no idea, and who knows when we will ever know. It would be nice if they would communicate some of this to us. I think that is the most frustrating part of everything.
Anyways, a while back I shared this poem with some of you. I occasionally have to go back and read it. It still makes me cry everytime, but it is a reminder for me to appreciate what I have. John is so amazing, and we are so lucky to have him in our life. I just wish he felt better.

Welcome To Holland

byEmily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It’s just a different place.
It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Well, we seem to be doing a little better. We are smiling, and playing right now. Other than going to see the doctor we haven't done anything but watch tv today. John's lungs and everything sounded good today so no pneumonia or bronchitis! Dr. Kristi, talked to our special care pediatrician and they had a great talk. Kristi was able to get a little insight that I wish I had months ago. The pediatrician does not believe that John has mitochondrial disease! Because of all the unknowns they cannot cross it off our list, that is not what they think is going on. What they do believe is that John has an unknown chromosomal deletion. Which puts us back to not knowing what is going on with him. So what do you do with that? Therapy! Which is a big part of our decision to move to Boston. We will be as active in therapy as we can. Hopefully we can get that set up asap.
Of course, I would love for my son to not have mito, and hopefully when we see the specialists in Boston they will be able to officially cross it off of our list. It has been good for me to learn about mito, and talk to people. Whether he has it or not, it helps to have people to talk to that are going through a lot of what we are going through. So whatever it is that John has I still know we are making the right decision to move to Boston. We will miss our new doctor here. Kristi has been so helpful in so many ways, but if we really do have to wait for science to catch up with John, then we will go sit in the middle of the best medical care and wait. John will benefit from the therapies there, and with his walker I can't imagine him having to push that thing around in the snow and ice.
Let hope that John continues to feel better. His birthday is Friday, and I would love for him to feel good on his birthday.

Well, we were doing better. Seems like John is going back downhill again. I am taking him back to see Dr. Kristi today. He has been waking up everyday wrenching, and continues to wrench throughout the day. At this point I don't know what is going on with him, but Johnny and I are so worried about him. It has been over a week and we want our little guy back.

Check this out! http://mito.convio.net/site/R?i=g-SvLZ5f05SSP6qDcHbB-Q
I won a green ipod nano from mitoaction.org. I never win anything, so it totally made my day. I didn't feel like I should take it since I don't have mito, so I had them give it to someone that has mito that would appreciate it. That made me feel even better.
John is doing well. He hasn't really done much today. He woke up early wrenching, so he came in bed with us and watched his videos. Then he fell back asleep. He is now working on his second nap of the day. It is very ugly out this weekend, so it is perfect for him to sleep and get better. Other than his wrenching, he seems to be doing good.
I hope you all are having a great weekend!

Thank you Dr. Kristi for making me feel better!

We had a rough day yesterday, so I wasn't able to post a blog. John should have been getting better by yesterday, but he was worse. So I brought him back to see Dr.Kristi, and we had to go down to the hospital for a chest x-ray and some blood work. John has a bacterial infection and a virus. His bronchitis had gotten worse, and he was starting to get phneumonia. So we went back to see Dr. Kristi, and she gave him a shot of a strong antibiotic, and changed his antibiotic to a stronger one. He has been wrenching a ton, but seems to be doing better. I have him set up in front of the TV so that he can rest. This little guy has had so much blood work done, he knows what is coming when they put the elastic band around his arm. It was so brutal having to hold him down. He is also hard to get blood from, so it normally takes a couple of times. My poor little guy.
After calling all week I finally got him in with the two top Mitochondrial doctors in the country. I was told it would be really hard, but honestly it was easier than getting appointments with the doctors at Denver Children's. So as of now we will be seeing 3 different Mitochondrial doctors when we get to Boston. Hopefully we will be able to get some answers. I know that we probably won't get a diagnosis, but they will be able to tell us if this is probably what he has or if it could be something else. I do believe that a week like we have had just helps prove that he has mito. Sienna got this same cold and it was gone in less than 24 hours. Kind of scary. Anyways, we are watching cartoons all day today. We do have the guy coming to size John for his pediatric walker. I can't wait to see him getting around on his own.

John isn't doing great. He went back to see Kristi yesterday, and sounded like he was getting a bronchial infection. She was worried about it turning into bacterial pneumonia again, so she put him on antibiotics. Today he has been wrenching a lot. I wish there was more I could do for him.
This move to Boston is stressing me out. Again, I know it is the right thing to do, but am overwhelmed finding a school for Sienna, and new pediatrician for John, etc. It is hard to decide on a school when you are not there to see it, but I also want her to start school asap so she doesn't have to go to John's dr. and therapy appointments. The schools are so expensive I can't even believe it. Since I can't really get a job until John is in school, we will have to depend on Johnny, and he can only do so much. Of course this is so overwhelming. I talked to a lady from the mitoaction organization, and she gave me so much helpful information medical care for John. She said that Children's is a great hospital, but for Mito you want to go to Tufts University. That is the #1 hospital for mito. I was able to get an appointment in the middle of December with a GI doctor that specializes in mito. This will be so helpful. I heard him talk the other day on a teleconference call, and he and his partner are the doctors to see. Hopefully he can get us on the right track, and maybe just give us a few answers on what is going on with John, as well as how to take care of him. I have had to start over on the school search, and the pediatrician search, but hey at least we still have ballet! I know it will all come together, it is just a lot to do, and want to do it right the first time.
I hope you all are having a great day.

Oh yeah, I forgot this site is about John. I wish I could say he is feeling better, but he is not. His wrenching is getting worse, and when he wrenches it makes his nose runny and stuffy. So on top of his teething, he is not feeling so great.

I feel good about our decision to move. I got John a special care pediatrician at Children's Hospital (I am trying to get Dr. Kristi to come with us, but no word yet :)), and am going to work on therapists next. Sienna is set to go to Cambridge Ellis School. They are so excited to have her. They are going to start writing her letters, and sending her pictures so that she will be familiar with the kids in her class. We will probably have to get a 5th job to pay for this school, but coming in halfway through the year there is no chance of getting financial aid until next year, and most schools are full. We believe that Sienna getting into a good school is just as important as John getting his therapies and medical care that he needs. I also officially got her into her ballet school, so she can start that the first week we get there. It is all so overwhelming, but I know this is the right thing to do, and I feel good about it. I know I will be busy with Johns therapy, and getting Sienna to school and ballet, that I won't have time to be homesick. We should not have a problem getting health insurance, it is just going to take about 5 weeks. So how do we get there, that is the big question. We will probably leave most of our stuff here in storage. We will bring the kids stuff, and the few things we need, and worry about our stuff later.
I hope that everyone is reading my blog so that I don't have to keep talking about our move. One, I will cry, and two, Sienna will cry. She heard me talking about it yesterday, and started sobbing so hard. I am obviously talking to her about all of this, but we do have to enjoy our last month here. So if you want to help, please tell people about our blogsite, and remind them to check it often. It really does help us. Thank you all!

So, I am sure the rumors are flying. If you haven't heard we have decided to move to Boston. This has been such a hard decision for us. We tried Boston, and returned to CB with the hopes of never having to move again. Crested Butte is our home, but unfortunately little John has not only challenged the services he has been receiving in CB, the Doctors at Children's has told us there is nothing they can do for him at this time. I am just not the mom that can take that and sit her while I rub his back everyday while he is sick. I have to do everything possible to get the care he needs, and getting him to Boston only makes sense. In Boston, we can visit with a whole new team of doctors to see if there is anything that can be done. He will also receive the therapies that he needs. There are support groups for parents of children with Mito that Johnny and I can benefit from. We can also eventually get John into a school that can take care of kids with special needs. This way I can eventually go back to work.
We are planning on leaving at the end of November depending on health insurance. John obviously can't go a day without insurance, so it has to be completely set up in Boston before we can go. I have begun to look into schools for Sienna, they are a bit expensive, so this will be a challenge for us, but will have to make it work. We did find her a wonderful ballet school which has been helpful in getting her excited about our move. I will have all therapy set up for John so that we can get going on that asap.
As most of you know this will be extremely hard for our family, so I hope you all can be supportive of our decision. I really did not plan of having to move from CB again, but we know that John is just going to struggle here. Johnny, Sienna, and I can fit in anywhere, but John can't. I have tried everything to make this work for him here, but he is just not making the progress that I would like to see. So hopefully we can find the help and answers we need in Boston, and if that miracle happens that we all keep talking about, then we will be back!
I will continue to update John's site, so please keep thinking about us. We will still need all the support we can get, and will miss all of our friends in CB. It is like having a big extended family here, and we will miss every bit of it.

Sorry I didn't get to post a blog yesterday. John wasn't feeling good, so I took him into get checked by Doctor Kristi. He is fine, just cutting a mouth full of teeth. It is funny how I freak out so easily with him. I knew he wasn't feeling good, but he was playing with his toys, and then all of a suddden he was sleeping. Sitting up with a car in his hand? He has done this so many times when he doesn't feel good, but it is just not right to fall asleep sitting up and it scares me when he does it. So I brought him in to check his O2, heart, lungs, etc. I feel like I have to be so careful with this kid. I am so thankful that Kristi is so accomodating to us.

We are just hanging out today. It is cold and ugly out today. A bunch of you have asked about the fundraiser, and we decided that we were going to wait. (Dad) John and I are just not ready, and the owners at Lils thought that a little more time would be good for them. I still really appreciate the thought, and when we have one it will be well put together.

Yesterday, before I took John to the doctor, there was a teleconference with a doctor from Boston. He was a GI doctor that specializes in Mitochondrial, and the topic was "tummy troubles". I have never done anything like it, but it was so imformative. I learned some new things about the issues that John has been going through with his whole GI system. I do have to listen to it again because the Doctor had such a strong accent that he was hard to understand at times. There were also alot of medical terms I did not understand so I will have to look them up. I am going to try to get an appointment with him in Boston.

I hope you all have a good weekend. I probably won't post anything tomorrow. We have a whole half day off together, so we will hopefully come up with something to do.

I will make this one short. I am sure you all are still trying to get through yesterdays! We are having a okay day today. Some reason he doesn't seem like himself today. He is a bit fussy and feels warm to me although he has no temp. We cuddled up in bed and watched some einstein videos. Of course I love my cuddle time with this little guy, but I worry when he has days like this. Hopefully he will be feeling better after his nap. I gave him some motrin, so maybe that will help him. Hope you are are well. Sienna is in school today, so I better get some cleaning done while I have a chance. Thanks again for all your emails of support. It really helps knowing I have so many people that are concerned about my little guy.

A little longer than normal!

Sienna had ballet this morning, this was her second class. She has been asking everyday for the last year when does she get to do ballet. Now she asks everyday, when do I get my recital? She is so cute. After ballet we went to the park for a picnic. Not sure why but John got sick, so we had to pack it up and leave. Thanks Kara, for keeping Sienna so that she didn't have to quickly leave to get John home.

I feel like I have to touch again on why I am leaning in the direction of Mitochondrial Disease. We have been through a lot to get to here, and maybe this can help answer some of your questions. I am sure there are a lot out there. I feel that some people think I am giving up hope, and turning to Mito just so that I can have answers. First, I will NEVER give up hope! Diagnosed or not I will always have hope. I will never give up, and if we get through all of this and he happens to out grow it, then I will forever believe in miracles, and hey, maybe I'll even start going to church!!! When John was born I had this crazy gut feeling that something wasn't right. He came out and was barely screaming? Then I had to believe that just because he didn't scream as loud as his sister (which is very hard to compete with) doesn't mean that something is wrong. He didn't do good on his first apgar test, but the second he passed. So then I felt better. Then he quit breastfeeding, and again I had this gut feeling. Feeding John has never been "right". To explain this without writing everything down is now impossible. Over the last two years, I watch him so closely trying to figure out what is not right. I have done everything there is to do to take care of this kid. I even went through denial, assuming I just have a very sleepy baby, "he's just perfect"!

When I first read about mitochondrial we had just met with the GI doctor. We discussed a g-tube for the first time, and I freaked. I came home and researched. That is when I first read about Mito. When you read about g-tubes you will always find info on Mito. I read a story of a mom with a little boy who had Mito. I swear I could have written the story myself. At least the first half of it. I felt sick, and a couple of weeks after I read this I got the report from the GI doctor. We always get these after our visits, and there is a section that they write about their "impression". There it was at the end .... mitochondrial disease. I would then research every possible diagnosis, and Mito always stuck out. Throughout all of this I would read about all of our possibilities. This was hard, but I needed to educate myself so that when we went back to Children's I could ask the right questions. When all the genetic tests came back and there was nothing genetic they could point to I asked about Mito. The team of Doctors looked at each other in a way that I did not feel good about. Then they talked about the possibility of Mito. We then were sent over to the Metabolic Specialists. It takes months to get an appointment with specialists. Some take 6-7 months. Another reason why I have to stay on top of things.

To make a long story shorter, I have learned that I can either educate myself on something or turn my head and ignore it. I choose to educate myself no matter how ugly it maybe. The reason I am grasping Mito is because there are things I can do that might help my son. It could take 1,2 or even 10 years for an exact diagnosis. For now I can take precautions so that he doesn't get sick, or if he is heat tollerant (which I am starting to believe) then I can try to help keep him comfortable, and I can tell just by looking at him that he is going to start wrenching. I would not know any of this if I did not educate myself. I just want to try to keep him comfortable as best as I can. Whenever John gets sick, he really gets sick. Sienna and I are over it in two days. John has taken 6 weeks just to get over a cold. So hearing that Chicken pox is going around, scares me. Although he is vaccinated, there is no guarantee that he won't get it. His immune system has tested to be fine. We think it is because his body doesn't have the energy to fight. So again I can be cautious and sterilize my surrounding as best as I can without a bubble!

So I hope this answers any of your questions. If this all turns out to be nothing then call me the crazy mom, and we'll throw a party, a big party. I would much rather be crazy then ignore what my child could be suffering through.

Thanks again for everyones support. I know this got long, but sometimes it just feels good to sit down and write about all of this. I appreciate everyone's support, emails, thoughts, prayers, etc. I don't know what I would do without all of you.

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..