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.