So little John was admitted to the hospital yesterday. We thought it was H1N1, but it turned out to be RSV. He also has bacterial pneumonia, and they have been watching him for encephalitis. His stats were all over the place, and he was finally given a room after 2 in the morning! It is a little abnormal for a 3 yo to get RSV, especially to become hospitalized, but due to his health conditions he went down quick. They are watching his stats, and he is doing a little better. He should be fine, but they are keeping a close watch on him. I will keep you updated. We are all fine, just spent!

This will probably be a long one as I have a lot to tell you all about! We finally got a diagnosis. We have been talking about this one for a while, but as of now it is our diagnosis. FG Syndrome..What is FG Syndrome? Well, remember Rainman. I recommend looking it up, as it is not an easy one to explain. I have to say, it is kind of fascinating to read about. It explains a lot. I guess 1/3 of infants and toddlers die from respitory infections which explains his illness he had until we got into see pulmonary. So when I say I he almost died there before we left CB, I honestly felt that was true. So my advice to you moms out there, go with your instinct. I have a lot of respect for doctors, and feel they tried their best, but I knew there was more to it, and I did what my instincts told me, and today John is feeling great! As you remember in Rainman, he was extremely brilliant. I have said for a long time that my son is a genius, he just hasn't had a chance to show it. Anyone that has worked with him, or even has met him agrees. That part of rainman is "Savant" we have not been diagnosed with Savant, but I do believe that it is in the future. The original Rainman's name is Kim Peek. If you google him, you will learn that he was diagnosed with FG syndrome just last year. Absolutely fascinating, and if my son was to be diagnosed with anything, this one is not so bad. The best part, is that it is going to be a complete mystery to what this boys future will be like.
One not so good part to this is that more than likely he got the gene from me, which makes Sienna a carrier. So when it is time for her to want children, we will have to work with a specialist. So I guess I better start saving my money now, and hope by then they will be able to work with this.
On another note, it was exactly a year ago yesterday that we landed in Boston. Ironically I had a dream the night before that we had decided to move back to CB now that John is Healthy. It was so great to see our friends, but I have to say, I was bummed to leave what we have going for us out here. I still love my job, and am waiting to hear about grad school. Sienna is doing so well out here. She just finished soccer, and is now starting ice skating. After one lesson she already knows how to ice skate on her own. She is rehersing for the Nutcracker, and has made more friends than I can keep track of. Things are great here. John is doing so well in school, and I could not be happier with his education he is receiving. Sienna's school is equally good, so I am very content with our lives here in Boston. Even Johnny has been doing good considering the economic times, and starting his real estate business at the time he did.
So on that note, it will be very interesting to see where John ends up in life. I can't wait to watch him, as I know he is already so unique, and will continue to keep everyone guessing. I am so lucky to have such a sweet boy in my life. They do not come sweeter than him!

I can't believe how long it has been since my last post! No news is good news. So where to begin with the update...
John is now walking!!! He is selective and only walks when he wants. He is really fast scooting, so he would prefer to scoot, but we are working on him. He is doing so well in our new house. He can get anywhere in the house. He has a few words now. Hat, and hi. He is also mimicking noises, which is a great. John is starting preschool on October 19th! The town we live in has a wonderful special ed program. We have already met with his "TEAM" and I have a really great feeling about them. Things are really going well for us here. Our neighbors are wonderful, it is quiet, and very dog friendly. It sure has been nice to get our own place, our belongings back, and settle down. Sienna is doing wonderful. She started Kindergarten inwhich she loves. She is making more friends than I can keep up with. She has a new boyfriend, (but still claims that Blake is her Crested Butte boyfriend!) She is playing soccer, and doing ballet. The little girl upstairs is 2 months younger than her, and they have become best friends. It could not have worked out better for us here. I am fortunately still working at the shelter. Due to my previous employment here, I was able to use "Seniority" and avoid layoffs! I also qualify for ed pay, so I am applying to go to grad school to receive my MSW! I am sending off the application this week. The school I am applying to has a pt program which allows me to continue working. Since John is going to school 5x a week, I figured I should take advantage of this opportunity. I have a lot of down time at work that I will be able to do homework.
Johnny is getting busy at work which is good. He has been doing a great job as Mr. Mom.
So again everything is going well here. I cannot access my blog at work, which is why I am not updating much. I will try to do better. I will also try to post some pics. I hope you all are doing well, and thank you again for your continued support!

Well, we are getting ready to move! We are allowed in the apartment to paint and clean, so we have been over there the last couple of days. The neighbors above us have a little girl one month younger than Sienna, and they get along already. Little John is so excited there. He can scoot, and walk (with his walker) around the whole place. He scooted so much the last couple of days he has a sore on his ankle. He is still doing good. We haven't been to any doctor appointments lately, but we will begin another round of them started at the end of August. Last week his therapist made him a picture book of his favorite toys, the car, stroller, bike cart, me, Johnny, Sienna, etc. He absolutely loves it. He gets so excited to pick out which toy he wants to play with. I guess the other day while I was at work he was looking at my picture saying ma ma. So I am not writing much on the blog these days, but I will continue to keep you all updated. I am happy that there isn't much going on. Like I said we will start going to the doctor a bunch after August, so I am sure I will be on more. Hope you all are well. We will be moving the next couple of weeks, so I will be busy.

Well, we are moving into our own place. We signed a lease last week on an apartment in Belmont. We get to move in Aug 1! Belmont is the town I was waiting tables at, and I have loved it ever since. I found some movers that will move our stuff from CB and bring it to us so that we do not have to deal with going back and getting it. We are ready to get our belongings out of storage, and settle down in a place. One reason I picked Belmont is because the schools are some of the best in the state. It will be good for Sienna, as well as for little John. They have excellent special ed programs. He is still going to get to go to preschool this October, and will transition from Cambridge to Belmont in time for his birthday. So exciting I can hardly wait. The apartment is big and open, and everything is on the first floor, so John will have the freedom to move around as he would like to. So that is our exciting news. Work is still going great for me. I am a little nervous about budget cuts and layoffs. I am sure I am not the only one. Hope you all are doing well.

We had a great time at the walk for Children's Hospital. Thank you all so for your support, as it made me feel as I am giving back for all they have done for us. We raised over $1200! It was our first fundraiser like this, and we can't wait to do it again next year!

John is doing well. He is trying to sing, and talk, as well as dance, and sign. I can't even believe everything he is doing. He even started taking some bites of pudding the other day off of my finger. So again I just can't even express all that he is doing. We did meet with our genetic doctor. We all decided that he would not benefit from a FG diagnosis. He did mention that he is mildly mentally retarded, which is not the first time I have heard it, but it is very hard to take in. So I have been processing that one for the last 2 weeks. We decided not to get him diagnosed with autism spectrum disorder as the doctors are not convinced that this is a good diagnosis for him. We were able to get diagnosed with PDD which stands for pervasive developmental disorder. John definitely falls in this criteria, and this diagnosis will get him the extra services that we have been trying to get him. He is just as happy as can be, and we absolutely love him the way he is. I still think he is perfect, although he is getting so heavy to carry around!

Sienna is graduating on Thursday from preschool. She is very excited, and will then start her summer camps to keep her busy, as well as free up some time for John's therapy and doctors.

I absolutely love my job. It is perfect for me. There is alot of down time, so I decided to apply to get my MSW. I am planning on starting in January. The state will pay for this program, and I have been wanting to do this for the last 5 years. I am almost done with my application which isn't due until October! It is only part time, so it will take me 4 years unstead of 2. I just don't think full time school is a possibility at this time. I am sure I am forgetting some more. Here are a bunch of pictures! Enjoy!!

We had a wonderful vacation in Texas. My family has almost recovered from the Hurricane damage. It was very interesting to see the damage of the storm 6 months later. I would have hated to see what it looked like when the storm hit. Little John had an excellent time. Other than pulling his gtube out of his stomach for the first time, we did good. He was in the water almost the whole time, and had a great time. We went boating, to the beach, to the pool, and to a water park in which he sat in a kid tube (with an adult and a lifejacket) and floated around the lazy river all day long. Sienna wants to move there so that we can swim everyday. I am trying to explain that it was a vacation, and we just can't play like that everyday.
I started my new job yesterday, and I think it will be the perfect job for me for a long time. Everyone that I work with has been there for many years, and they still love it there.
So we are doing well. The vacation was just what we needed, and we were lucky enough to see so many different family members. I can't wait until our next vacation! I will get some pics posted soon.

Where to begin... Obviously from the pictures, Sienna had her dance recital! She did such a great job, and loved being on stage performing. She took it very seriously, and I am so proud of her. We are already talking about next years recital! The picture of John is at the Children's museum flying an airplane. He continues to do so well. Right now he is being evaluated for preschool. So on top of all his other therapy appointments, we are meeting with another round of people to transition him into a special needs preschool. We have decided to seek a diagnosis for John. Like we haven't already been doing that. We are looking to get him diagnosed with "autism spectrum disorder". This would benefit him in which he would qualify for a very intensive therapy program. He is not your typical autistic child, but we can put him on the wide range of the spectrum, and like I said before I don't want him labeled unless it is going to help him, and this will help him.

I am so excited to be celebrating my retirement as a waitress this Saturday! I am really going to miss the new friends I have made at the new restaurant, but can always stay in touch with them. I start my new job on June 2nd. After putting in my notice, and getting a start date with DCF, I realized I had a little over a week in between jobs. So we are squeeking in a trip to Texas to visit my family. I have not seen my meme in a year and a half, which is the longest I have ever been without meme time! Sienna has been asking to see her grammy and papa as well. John, well he doesn't care, but I am sure he will have fun. I will try to get the video of Sienna's recital on utube soon.

Hope all is well.

Well, I am absolutely estatic! I got the social work job today. I had to go to the restaurant and quit, but they were more than understanding, and I will work there for another two weeks so they can find someone to replace me. I will miss my new friends at Il Casale, but I can't wait to get back to my career. I had to share the news with you all. I picked up a couple of lobsters, and we are celebrating tonight! Hope all is well.

Well, we had two doctor appointments this week, and things are looking good. GI increased his calorie intake, and things are going well. We don't have to go back for 3 months. I was told we would not be giving him anything to stimulate hunger until he is eating at least 50% of his calories. As of right now he is at 0%! So we have a long ways to go. We saw pulmonary today, John is still doing well, and we made a deal with the doctor that we will stay healthy until we see her again in September! We will not be taking his adenoids out. I don't believe this is necessary, and him staying healthy proves me to be right! Not much else is going on. Sienna is anxiously waiting for her big ballerina debut. She says she is the star of the show. I am still waiting to find out about the job. They called again today, and said that they should have an answer by the end of the week. At this point I would love to still get the job, but I am happy where I am at, and making new friends, and I am not working full time but making okay money. So if I don't get this job, I should be able to go back to social work by next winter.

I can't believe I haven't written in so long. I guess no news is good news! John continues to do so well. He is still trying to stand on his own and take steps. He is also starting to mimick noises which he has never done before. He even said uh oh the other day. He tries to sing twinkle twinkle little star, although it sounds nothing like the song, it is the same everytime. John is also growing. I can tell because his pants are starting to look too short for him. I am so amazed at how well he is doing. As I have stated before I have been taking a break from all of the doctors (except pulmonary which we will see next week) I finally made all the appointments again, so we will be back on the doctor routine. I have really enjoyed the time we have taken off from the docs. We have almost felt normal again.
I keep forgeting to let everyone know that Sienna's dance recital is coming up. It is May 17th, at noon. If anyone would like to go just let me know. This is a huge deal for her as she has been wanting a recital for almost 2 years now!
As of my jobs, I am still waiting to hear from DCF (Social work). They said they would call either this week or next. I am working at the italian restaurant which is going very well. I really like the owners and the people I work with. It is very well run, and it has been completely packed, and we haven't even had our official opening yet.
We are still looking for sponsors for our walk for Children's next month. I will be sending out another email soon. Thank you to all of you whom have already donated. I am really excited to do my first Children's fundraiser.
I hope you all are well. I am still missing Crested Butte (really just our friends), but have no desire to move back at this point. Seeing John with the progress he has made reminds me everyday that we made the best decision for him. We are currently working with the schools to find him a special ed school for him in October. I know that I have provided him with the best care so that he can live to his highest potential, and will continue to work and advocate for him. I miss you all, and thanks again for all your support.

Here are a few easter pics, as well as a not so good shot of Johns first steps. Obviously we have a ways to go, but I am thrilled that he is showing interest in walking and standing on his own. Also the picture of him laying on the ground is him randomly falling asleep while playing in the middle of the room!

I am SOOOOO happy to report to all of you that today John took 3 steps on his own!!!!!!!!YYYYYEEEEAAAAAHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!
He holds onto my knees facing me, lets go and walks until he reaches me. I am so excited, and the best is that he is so excited for himself. I just cannot believe that he is doing so well out here.
I hope you all had a wonderful weekend. We went to Vermont, and had a very fun, sugary easter. I think we have enough candy to last us until Halloween. That is even with me helping out! I have been busy, and am not sure where to begin. I got the job at the italian restaurant. I then got a call from social services for an interview. The interview went very well. I am feeling very good about getting the job, but am trying not to get my hopes up. I started the restaurant job last week, and really enjoyed it. It is a nice local italian family (3 boys) who have traveled to Italy and is now opening their second restaurant. They are so nice, and have a lot of respect for their employees. My first night they fed me dinner, I trained for a couple of hours, and then they fed me dinner again with drinks. They served me a total of 9 different selections. Needless to say, I way over ate, and waddled my way home that night. I guess they do this to their new employees to show them they appreciate you coming to work for them. Gotta love those Italians! Today I was training at the new restaurant and got a phone call from social services. They couldn't find my references, and wanted to call and check them today. So I now have my hopes up to get that job. I will hate to leave my new "family" at the restaurant, but the social service job is what I love to do, and it is what I went to college for. So things are looking good for us.
Sienna is doing great. She learned to ski on her own this weekend, and I think her dad is now dreaming of his ski racer he always wanted.
Again, Little John is doing so well. I have been staying away from the doctors. I guess we both need a break. His therapy is what is really benefiting him, and It is great to see him progressing. I will try to post some pics in the next couple of days.

I just realized I never followed up from John's ENT visit. I have been waiting for the doctors to talk, and was supposed to get a phone call. I will have to call on Monday. Basically they do not want to do the sinus surgery on John because of his age. They did want to take out his adnoids. I kind of felt like the doctor didn't know what else to do so this was the only thing he could think of. He wanted me to make the decision, but I was not going to. We decided that he should talk to our pulmonary doctor, and our Primary care doctor and see what the three of them think. I have seen the other two doctors a bunch, and if they recommend it I will consider it. I just don't feel like putting John through a surgery if he doesn't need to.
John is still doing well. I am extremely happy with the things he has been doing. He was collecting all the toys in the bath the other night so that his sister couldn't get them, and he had a play date yesterday, and the two boys fought over a toy the whole time. It was good to see him doing this stuff. We have been doing his feedings during the day, and hopefully soon we can start to stimulate his hunger so he might start to eat.
Things are going well here. I have had three job(waitress) offers, and have narrowed it down to two. I also got an interview on Tuesday for a social work job in a homeless shelter for women and their children. I applied a couple of weeks ago, and never heard anything, so I assumed they found someone else. They called, and I am so excited about this job possibility. It would be similiar to what I did before. It would be through the state which would be wonderful for benefits. I would be working Tues-Sat 3-11:30 pm! It is a little more than I would be working in a restaurant, but at least I would be doing what I like to do, and using my college degree! I would definitely have to hire some help cleaning and taking care of the kids a few hours a week, but I have been very anxious to get back into social work. So wish me luck!

John just had a great week. He is very interested in learning new signs, and seems to be picking up on them faster. He can now do the two signs along with twinkle little star! Very cute. His nose seems to be doing a little better. We are meeting with the ENT doctor tomorrow to see what to do about his sinus infection. Therapy still continues to go very well. We took John to a train show yesterday, and he was absolutely fascinated with the trains. It is so nice to see him starting to have interests. We found a nice park in the town next to us. John is able to use his walker there, and it is so nice to see him independent at the park. I am normally guessing what he wants to do. He even spent some time checking out the fence!
On another note, I quit my job. I tried to give them a 2 week notice, but I just couldn't do it anymore. Some of the people I worked with were great, but the others including the owner weren't nice at all, and I was doing a lot of work that I should not have been doing. I have never just left a job like that, but I just didn't feel like I owed them anything.
So I have started interviewing for another waitress job. I think I have found two, and will find out this week. Both are a lot better run, and seems like a better fit for me. We will be meeting with the school district in two weeks about John starting school in October. I still don't know if I will be able to work full time Monday -Friday, but it will give me so much more freedom to do something with.
Sienna is doing great. She continues to make new friends. She is starting soccer in a few weeks and is very excited. I got her a pink soccer ball to practice with, but it is not allowed to get dirty! We will see how soccer works for us. For those of you interested her Dance recital is on May 17th at noon. Anyone is invited, so if you would like to go, just let me know, and I will get tickets.
We are still excited about our fundraiser for Children's. We have had so many people sponsor us already. Thank you again to everyone that has helped us.

Thank you all who have already sponsored our walk for Children's Hospital. I can't thank you enough for your support. We have almost met our $600 goal, but don't plan on stopping there. We will be a "miracle maker" if we reach $750! I feel like Children's has done so much for us, that this is our way of paying them back. The walk isn't until June 14th, but if you would like to sponsor us, and help so many children similiar to John, and a lot that are worse off than John. Go to
http://howtohelp.childrenshospital.org/walk/pfp/?ID=AJ0041
John is doing well. He doesn't have too much going on this week. He is supposed to see the opthamologist again, but I think I am going to cancel. It isn't that important, and I am starting to be a lot more selective of the things they are doing to him. He will be seeing the ENT doctor next week, and we will then hopefully find out what the next step with his sinus infection is. I hope you all are well. It is starting to look like spring out here, and I can't wait for it to stay warm.

So the website is ready.
http://howtohelp.childrenshospital.org/walk/pfp/?ID=AJ0042
We all need to raise $150 each!
I will be pushing everyone to help!
Thank you all for your support!!!
Anyone is invited to join our team.
TEAM ANGIER

I have been trying do a post, but it has been so nice out I have not been able to find the time. John is doing good. He is cutting his molars, still fighting his sinus infection, and has started a horrible habit...biting. He gets really excited and bites me, and he just thinks it is so funny. I am not sure how to break this habit. When I tell him that is bad, he just continues laughing, and doesn't pay any attention to me.

We have had a busy week. It is finally getting nice out, so we have been able to go for walks, go to the beach, play at the park, etc. This last week John met with the feeding team at Boston Children's. He did pretty good, he sat in the highchair, played with some food, and then threw the jar of food across the room. There were bananas on the door, chairs, walls, ceilings, cabinets...I warned them about this. It was just an evaluation, and I am not sure what we will be doing with them next.

Today we had a follow up at the dentist. We will go back in another month to get his cavity filled. I can't wait.

Today I signed the family up for a walk for Children's hospital. "Team Angier" will be walking 2 miles, on June 14th. We will be looking for sponsors from everyone, so be ready! If you are interested in joining the team, let me know, and I will send out the info. I am working on the website right now, but as soon as I am done with it I will be posting it on this site. I am expecting EVERYONE to help us raise money. So start saving now.

John hasn't been feeling too good. We think his sinuses are bothering him. He woke up the other night and screamed for about two hours. I cranked up his humidifier yesterday, and he seemed to be doing better today. He went to the doctor yesterday, but didn't have a fever, and because of his antibiotics we doubt he has an infection. So we will just keep an eye on him. Tomorrow he is meeting with the feeding team, and the larynthology doctors. We were supposed to meet last week, but the doctor canceled. So now we go tomorrow. I am looking forward to this, as this is a big part of us moving here. I do have to admit that until he gets his sinuses feeling better, I doubt he will want to eat anything. We were at the pharmacy the other day and the pharmacist insisted on John having a lollipop. I tried to tell her no, but she didn't believe me that he didn't like them. So he took it, looked at it, and threw it on the floor. What do you do? Sienna had a playdate today at her friends house. They get along so well, It was so nice, I was able to vacuum the house! I hope you all are doing well.

We had our pulmonary appointment yesterday. To start we are not allergic to the dog and we can keep Jasmine! The bloodwork is more accurate than a skin test, so that is what we will go by. As of his lungs he does not have any type of lung disease. His lungs are plugged by mucus, due to his "chronic sinitius disease". We will be meeting with our ENT doctor about this, and there is a possibility he will have to have a surgery. I am not getting worked up until we know more about this. As for now, he has to switch to another antibiotic for another 30 days, increase his nebulizer uses, and some other meds that I am not sure what the name is. I was told that he cannot return to CB for a while, and he also cannot fly. Not that we had any money to travel, but I was hoping to go visit family soon, and get a break from the East coast. I wish I could say that I am still making the best out of it, but I am wanting to go home. I am just not an East Coast person, and can't imagine staying here for much longer. Oh well, I guess I will have to get used to it. I am here for one reason and that is for John, and he is definitely doing good out here. Sienna asked a couple of days ago when we are going back to CB, and tried to convince me that she can go to Kindergarden in CB. I did good, and told her that her new friends would miss her, but I have to admit that I am having a tough time now. I miss my family, and my friends, and don't know when I will be able to see anyone. I will get through this.

We had our genetics appointment yesterday. I wasn't expecting much since we got the results back on Monday. Unfortunately, they still believe John has fg syndrome, and did another round of testing yesterday. I am not sure how I feel about all of this. Genetics is so confusing to me, and there is never a 100% diagnosis. Whether he has a normal or abnormal test result. So John got to go and get his blood drawn again. I can't even count how many times he has had to get blood drawn. Again whether he has FG syndrome or not, we still have to continue doing what we are already doing which is keeping him in all his therapy. If only there were more days in the week for all of this.
On a good note, John is now walking holding my hand! It is so great, he is so proud of himself he just squeels and laughs. He has almost fallen down because of his uncontrolable excitement. His speech therapist is working on sign language with him, and his has learned a sign for twinkle little star.
Again, I want everyone to know how amazing this little guy is. For those of you who don't get to see him often, or not at all, he is the sweetest, happiest kid you will ever meet. The one thing that I have learned about him is that more than likely he has a genetic deletion. I do believe this for many reasons, but I am sure that his unhappy gene was deleted.

My bad week just got very good! John was cleared from Cardiology today. His heart is fine, and unless his lung issues effect his heart in the future, we should be able to stay away from Cardiology. I also got a phone call right before the Cardiology appointment from Genetics. John does not have FG syndrome! Again this is great news. I love to have this scratched off our list. They still want to look at that gene closer, but for now I am happy the first test came back normal. So our stressful week just made a turn in our favor! It is about time.
As of our dog situation, with time to think about it, we are going to do everything we can to keep Jasmine! There still is a chance that with his lung problems and his chronic sinusitis they may recommend us give up the dog, but for now I am going to hope for the best. The blood work will give us a better idea to how allergic he is, and if the dog is making John's symptoms worse. As of now, both of the kids as well as Johnny and I benefit from Jasmine, and could not imagine life with out our lab! I am so glad I have nothing but good news to report. I have been so stressed about this week. I know that we will just begin another round of genetic tests, which means another 6-8 weeks to get that test back, but for now I can still have my hope that John can outgrow this. Another hard part of these genetic disorders is that Sienna would not be able to have children because of the high chance of her being a carrier. I cannot imagine having to pass that news on to her one day, So I will continue to hope for the best!
Hope all is well!

I wish I could go to an appointment without coming home with any news! Today we had our allergy appointment... dog allergy! So now what do we do with our wonderful family lab. Give her up too. We have already given up our home, our friends, left our belongings in Colorado, and now we might have to give up our dog. We have more testing to do for allergy and immunology, but I chose to wait until next week to get the bloodwork done. It will tell us how allergic to the dog John is. We are going back to genetics next week, and there is a good chance we will have to give some more blood for that, so I wanted to wait so we could do it all at once. I am so tired of having to hold my son down so someone can take his blood. So that is what happened today. Obviously it is not a good day, but am not making any decisions until we get the blood results back. Wish I had better news today!

I got the best valentines day present this weekend. Johnny took the kids to Vermont, and I had the whole weekend to myself. I had to work a bunch, but it was so nice to have some time to myself. I got my haircut and chopped my hair! A little short, but I like it. The kids had a great time. Sienna skied, and Little John slept. It was nice to get them back. John and Sienna had their dentist appointment last week, and Sienna did great, but John did not like the appointment at all. We had to force him down to get into his mouth, and turns out he has two cavities! They aren't too bad, but we will go back in a month and try to decide what to do about them. I have never had a cavity, so this is all new for me! We had our therapy appointments, but it turns out that I had looked at the wrong month, and all those appointments I had talked about are next month. This week we have allergy. They will test him for any allergies. He has had this before, but only for cat and dog, and he was too young for it to show correct results. We have therapy, but it should be a good week because I got Sienna in Dance camp on Tuesday, and on Thursday if she likes it. So I will get a break! I hope you all had a wonderful weekend.

Here are some pics from xmas. I finally got them downloaded.

Yesterday Sienna had another playdate. She met this girl at ballet, and I swear they have been friends for ever. They were singing and dancing, and having a great time together. I am so happy to see her begin to make new friends. Her mom was even fun to hangout with. She is about to have baby number #3, and was fun to talk with while our girls performed.
After the playdate I realized that I had missed a call from our pediatrician. I called her back, but was not able to get intouch with her until it was time for me to go to work today. I stressed all night that she was calling about John's genetic test results which are supposed to come back any day. Instead she totally shocked me with news that after John's EKG the learned that he has an enlarged muscle in his heart. So we must now go see a cardiologist. I have been told by others that this is no big deal, but to me it is a huge deal. I have felt that throughout this whole rollercoaster, the one good thing was that we did not have any cardiology issues. I have even said that a ton, but now we need to go get his heart checked out. I am so sad about this, but am hoping for the best. He did have a bad sinus infection, and whatever his lung issue is, so maybe his heart has just been working overtime. I will keep you all posted.
Again I have to say how wonderful our therapy is going out here. I was not happy with our therapy we were getting in CB, but really had nothing to compare it to. It was a big reason for our move. We still haven't even started feeding therapy, or Laryonthology (however it is spelled), but we do have PT, OT, and now speech every week. I am seeing such progress with them, and am very impressed with our therapists. It is keeping me very busy during the days, but am glad to see it benefiting him.
I hope you are all well.

It has been a busy week, and I am finally getting a chance to write. John is doing very well. His therapy is going so good, and we are seeing such progress in him everyday. Wednesday we had an apointment with his nutritionist. We are working on a plan to get him to start eating by mouth. She is hoping to get his feeding tube out in 9-12 months. I would be so excited, but will just continue to take one day at a time. We have to cut his calories back for three weeks, and he will also be given a medication to stimulate hunger. They plan on him loosing weight, but he now has enough fat stored now that he will be fine. We then met with another neurologist on Thursday. The other one we met with was wonderful, but he was not affiliated with Children's, so I wanted to meet with a neurologist at Children's. He talked about some possible tests for the future if the genetic test comes back negative. He also had some ideas of programs for us to get involved in at Children's which is another reason why we went to see him. I have learned that it is so easy to do everything at the same place, so they can all communicate with each other, and I know no tests will be repeated.
We finally got to have our first play date this week. It was so nice to see Sienna playing with another kid. Her friend also has a little brother so it is good for little John as well. We met at the science museum which was so neat. I love the museums here in the city, as well as the indoor playgounds I have found. Sienna has another playdate with a different girl on Monday. So hopefully we will begin to make some new friends.
Another quick story, John has been very interested in fish tanks lately. He has been getting his little pointer finger out again, and pointing at them, and talking to them. Not sure what he is saying, but it is so nice to see him do this. So being the mom I am I got him a tiny little fish tank. Sienna decided she would teach him how to take care of the fish, so she gave him the instructions. He then put his arm around her, turned and gave her the longest, biggest hug. It was so sweet. She is always trying to hug on him, but he is never interested.
We have a very busy week. We have 5 doctors appointments, and 2 therapy appointments. So hopefully I'll make it through the week. Wish us luck!

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.