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!