It is snowing today. I am so sick of the snow, but today John was in bed with me and I opened the window. He looked out the window for a second and pointed (which has been something that he hasn't done in the past) and made a noise that sounded like snow! He continued to look outside making the same noise with his little pointer finger. His Einstein video was on, and normally he won't pay attention to anything but the video, but today he was into the snow! Then he got interested in his video again and got down from sitting to his belly (again something we have been working on for a long time) like it was nothing! I don't know, this kids definitely has a mind of his own.

So sorry to take so long to post an update on John. We went to the doctor on Friday, and his O2 was back to normal! We did get a little info from his cat scan, but we need to talk to his pulmonary doctor to find out what it all means. What they could tell us is his sinus "are not good" he has an infection. His lungs have swollen lymph nodes which could be the cause of an infection. His lungs are junky, and this is where they say the pulmonary doctor has to take over. We have an appointment with her, so we will get to find out what exactly all this means. He is doing well though. We put him on a low dose of antibiotics a couple of weeks ago, but we are going to increase the dose now. John is doing great though.
I haven't posted anything because I have been so over worked this week. Of course I didn't sleep the night before his procedure, and Friday I worked until after midnight, and John was up crying so again not much sleep. I was so spent last night I almost fell asleep on the train on my way to work. Then at work I served a bottle of wine, and then poured a glass into someone's water! I again am so thankful to work with people who understand what I am going through. I am hoping to cut a shift so I only work 4 nights a week. I was so tired when I got home last night I barely even remember getting home and going to bed. I now have 2 days off, and I am going to relax!

We are finally home. It was a very long day today, and we almost had to stay overnight. John had a hard time getting his oxygen up, and we were in recovery for many hours. He is doing fine now. We did not get any results from the cat scan, but we know that it was not normal. I knew it would not be, but I would have loved to be wrong. It was absolutely brutal forcing a mask on his face until he gave up and went to sleep. They said next time we would give him something through his G-tube. As of now we just wait. I have to take John in tomorrow to check his oxygen. We now have to wait until our Pulmonary doctor calls us.
We are glad we didn't have to spend the night, but we are tired.
Good Night!

Here is a picture of John sleeping in the grocery cart. It isn't the first time he fell asleep in a grocery cart, but it is still funny. We are waiting for his appointment Thursday, and I am getting a bit nervous. I know he will be okay, I am just worried about the outcome of the whole procedure. Hope you all are doing well. I am still making the best out of Boston, but am so tired of the winter. It has been cold, and we have received an abnormal amount of snow. I don't like John to be outside because of his breathing, so we are getting a little bit of cabin fever here. It is good to know that spring will be here a lot sooner than it would be if we were in CB.

Where to begin. We have had a busy week. I feel like my busy life from CB is slowly creeping up on me. Little John got sick this week. Here is a picture of him sleeping isn't he the cutest little thing. I kept him in bed for two days. He has started wretching again, which I believe has to do with his cold. Whenever he gets sick his chest sounds horrible, and he wretches up mucus. Poor little guy. He is feeling better although his nose is running again like it normally does, and his lungs sound junky no more fever or we would have to take him in to check for pneumonia. We are getting a cat scan on his lungs and his sinus this week to see what is going on and to check for possible lung disease. We go in on Thursday. This should be a simple procedure, but since he is two, and wouldn't sit still for 15 minutes they have to sedate him. Again not a big deal but since he might have a lung disease, he has to go under anesthesia. This sucks! So like going into surgery he has to have a gas mask, and an IV. I was able to get work off so that I can recover from this. I am sure John will be fine, but last time I had to leave him under anesthesia, I thought I was going to pass out. Hopefully this time will be better since he is not having surgery.

It is funny how tired he gets when he is sick. Since he was feeling better we went to the grocery store. We were out of everything. He rode in the car which he loves. About half way I noticed he was sleeping sitting up. So I layed him down and used my down coat to make him a soft pillow and bed. So he slept the rest of the time, with his legs hanging out the window of the car. It was quite funny.

Johnny found a job this week. He is working at Remax as an assistant to a realtor. This is a great job for him right now since it is obviously not a great time for him to start up on his own right now. We are both so thankful to find a job right now, and hopefully can start to get caught up on our bills!

So I am normally really good about sending Christmas cards, but this year, it is not going to happen. So Merry Christmas to you all, and Happy New Year. Here are some pics that I was going to use.

I have to share a story with you all. I ride the Train to work everyday, so today I headed to work. I got to where you wait for the next T and I noticed a guy wearing a suit but he somehow had forgotten his pants. Then I look at the girl sitting next to me and she is wearing no pants, as well as another guy. I am sitting there not wanting to make eye contact at anyone, but then thinking maybe I was going to be on candid camera or something. So we get on the bus and I sat next to this young mom, and she then looked at me after seeing the people I got on the T with. I told her I had no idea what was going on, but just sat there trying not to laugh. So the next stop a guy came on with no pants wearing black silk boxers with white on the front and a bow like a tux. I then lost it, I was laughing so hard I was crying. I could barely stay in my seat. Then a a guy who's wife couldn't even look at anyone, got up and went over to the guy and asked him why he was wearing his underwear? He said that he had gained a little weight and wasn't fitting into his pants, and wanted to be comfortable. Everytime I would start to get it together, someone in underwear walked on, or I would see someone's reaction to these people. Every stop a few more would get on the bus. I finally got to where I was going, and got out, and so did everyone of them but on the other side of the train. They were everywhere. People of all shapes and colors in every different kind of underwear. I was not sure if anyone would believe me, but I was still laughing so hard it hurt. So I got my phone out and took some pictures. I still don't know what was going on, but it was the funniest thing I have seen. I just had to share that story with you all as well as my pics.

John had his pulmonary appointment yesterday. He has to go in for a CT scan on his chest in a couple of weeks. They have to sedate him so that he can stay still for the procedure. He needs to have this test done to find out what exactly is going on with his lungs. He lungs still sounded junky, but not nearly as bad as they have been. John hasn't been sick since we first moved here which has been wonderful. Hopefully he can stay healthy for a little while so he can recover. He has been doing a lot of great new things. He is getting from laying to sitting all by himself, pulling himself to standing in his crib, and bending over and picking things up. He hasn't retched in a while which the doctors believe is because of his nebulizer. So things are going well here. Work is going okay for me. We have been a little slow, but I guess that is normal for downtown boston in January, especially when the weather is bad. I am just thankful to have a job right now. The people I work with are great, and I am really enjoying getting out of the house and meeting some people. I hope everyone is doing okay. I will continue to update the blog, I just don't have enough going on to update it everyday.

Happy New Year! I hope this year is a bit easier on us. We had a wonderful time in Vermont. I started a job at a fine dining restaurant in Downtown Boston called Marliave. I am working 5 nights, so have been a little busy adjusting to my new schedule. My mom was also able to visit which was very nice. The kids really enjoyed her, and we were able to show her around the city. She wasn't here long enough. It sure was nice to have an extra person around.
John had a metabolic appointment this week. The doctor was also a genetic specialists, and seemed to be quite intersted in John. He does not believe that John has a metabolic disorder, but does believe that he possibly has a genetic deletion. After spending a little time with him he believed that John has FG syndrome! John has not been tested for this so we did another genetic test. It will take 6-8 weeks to get the results back for this. So a year later with very little answers we are awaiting another genetic test. I am not going to get too involved in this until the results come back. It does sound like a possibility, but we will see. I have had a lot of possibilities, but nothing that has been able to diagnose John.
We did come back from our Christmas vacation to a very generous gift. Our friends at Coldwell Banker Bighorn Realty in Crested Butte had a fundraiser for us at the annual Christmas party and sent us a very nice present. THANK YOU SO MUCH!!! It was so nice to be able to get caught up on some bills, and to know that our family in CB is still thinking about us. It means so much to us.
We hope everyone has a wonderful New Year. John has a visit with his pulmonary specialist this week. I am anxious to see how his lungs are looking on another chest x-ray.