Surgery

I am having the surgery in my throat and oesophagus today around 4 p.m. I am nervous and excited at the same time... and very very hungry. This fasting thing is hard...

Marcus recognizing words

The other day Marcus said he would like to read with me. I was surprised, because all these years it has always been Mattias that has been interested in letters, but never Marcus. I wrote down "hat" and to my BIG surprise Marcus read it. Then I went on to writing "cat", "can", "pan", "ball" and a few more words. I realized that Marcus could "read" them because he recognized them, so I introduced him to the webpage Starfall that Mattias used to play with when he was younger, and Marcus loved it. Now after coming home from preschool, he says he has to go and work a little bit. Then he sits down on the computer and plays reading games at Starfall.com.

The other night he told Darren he was going to write, and he wrote the words "pump" and "pumpkin" with a bit of spelling help. The first time I saw him write something was this fall when he out of the blue wrote "stop" on his board when he wanted me to stop vacuuming, but other than that I have only seen him write his name. So I guess his interest for writing and reading has started. It will be interesting to see if he reads as early as Mattias did.

Marcus is really good at math too, and that is something Mattias has just started to pick up after starting grade 1. I have a feeling Marcus will like math even more than Mattias :o)

It is so fun to watch their little minds learn and their excitment when they get it.

Closing the Blog?

Darren and I have again talked about the fact that we should probably close the blog, and make it only available for friends and family. I did try it once before, but wasn't able to because you can only invite 100 friends to follow the blog, and at that time we had more people following us. 


I have a feeling that now when most people are on Facebook, our blog is less viewed, so we thought we might try closing it again. So if you would like to follow us, please email me or leave a message here. I will need your email address to be able to invite you and provide you with a password.


If we still have more than a 100 people that follow us closely, we will reconsider what we will do and I will let you know of course. Well... it will be easy to see, because then this page will still be up :o)


I will give you guys some time to get back to me though.

Our Weekly Routine

I don't find myself blogging very much lately. The days are more busy now that I work, and to be honest it would just end up being a lot of boring talk about my problems swallowing, changing the diet to no soy and lecithin. Today I even heard that the wax on the apples contain soy. It can be a bit overwhelming.

We are also very busy with activities this season. On Mondays Mattias attends basketball. He absolutely loves it, and he is quite good at throwing the ball. Running is a challenge, but he doesn't complain. Then in the evening I go to choir practise. On Tuesdays Marcus goes to a neighbour called Kajsa. Her son is in Mattias' class, while I take Mattias to Dr. Steinberg after school. And today Mattias has a friend coming to us after dinner.

On Wednesdays and Thursdays I usually work, and Mattias attends the Beavers most Wednesdays. It is usually Mattias' EA from school or Dale that babysits on Wednesday until Darren comes home and takes both boys with him to the Beavers. On Thursday Sydney babysits. I like the thought that Mattias is building a close relationship to someone that lives with the same heart condition as he has. Usually Kajsa takes Marcus for an hour before picking up Mattias and walks them home with her son Julian and waits until Sydney arrives shortly after.

Fridays are often busy with things too. Two weeks ago we went to the Austrian Club for dinner, and last week we went with the Starlight Foundation for handicapped children and had an absolutely spectacular evening at The Planitarium, a museum about space. It couldn't get more perfect for Mattias, and Marcus really enjoyed it too.

On Saturdays Marcus attends hockey (without skates) together with Darren. It is a parent participation program, and he likes some of it, but doesn't like to do the more difficult things and refuses to try at times. Then after Darren takes Marcus to a music session, while he usually buys groceries. Mattias and I work with Globalskolen and his Norwegian lessons. On Sundays Marcus attends gym and Mattias takes science. Mattias found the 1,5 hour long gymnastics that he did this fall for his age group too long and tiring, so he quit. 45 minutes basketball has replaced that, and he loves it as mentioned already. And Sunday evening both boys attend swimming lessons. I usually swim around 800 meters too, and Darren watches the boys. After the whole family play together in the pool. And last Sunday we even fit in a trip to McDonalds for lunch and a "Phineas and Ferb" Disney show at The Pacific Coliseum.

And in addition to this Mattias has some homework from school, and also reading projects. He is getting so good at reading now, that instead of reading simple books, he has been given "chapter" books from school and gets to write in every chapter he reads instead of every book on his book report paper.

And sometimes I work a Tuesday, Friday or a Saturday if needed. Usually I only work two days a week, but sometimes it is one and sometimes three or four days, all depending. Those times I need to catch up on some sleep when Marcus is at preschool, and I find that I don't get much house work done. I also try to go to the gym once a week and also an computer course. It is a one to one course at Apple, and I can sign up when needed as long as they have an open slot. That can be hard though, since they only book one week ahead. Unfortunately it books up really quick, especially the times I can go when both boys are in school.

And not to forget a lot of doctor appointments for Mattias and me lately too. This Thursday I am going in for a two hour appointment with the anesthetist, preparing for my surgery next Thursday. And I have to admit I am starting to get pretty nervous about it all.

New Rug

Two weeks ago Marcus walked in his sleep and peed on our area rug. We cleaned and steam cleaned it and couldn't get the smell out. I went to 15 store, not exaggerating, but couldn't find something that was as good in size and colour and that brightened up the room the same way the old one did, but hopefully this will hide spots a bit better. I took these pictures more for myself as we where trying 3 different rugs that I had bought and brought home to compare and decide between, so I hadn't been botherd to tidy up the room first. But anyway, this is the rug we ended up with.

I don't have a picture of the old rug on this computer to attach here. I tried to copy one from my Facebook, but even though I can see it in my IPhotos, it doesn't show up when I try to download it....

Soy Trouble

Took the first step searching for soy in the food I already eat and don't react to, but which I was told today, is probably still harming me. Well, I found it in my gum, Hals, kids crayons, margarine, all my sauces, favourite chocolate, all my dressings, in spices, yogurt, some bread products. I guess food will be very dry from now on, if I can't use any butter, sauce, dressing, soup etc. And I who love sushi!

Met a Dietitian Today

I had a big AHA moment at the dietitian today. It all makes so much sense to me. Simple explanation. Every time I have food allergies, not when they are anaphylactic of course, but the regular reactions, I have pain down my whole oesophagus for hours. This causes irritation, (kind of what happens with EE that the doctor in USA thought it is which is linked with people who have food allergies, asthma and psoriasis), and makes my throat and oesophagus tighten over time. The dietitian taught me even more about my SOY allergy today. And I think this might be the cause of all my problems. I have cut out soy, but need to do an even better investigation to what contains soy. So much is not labeled, and even if I don't feel allergic reactions to it, it tightens my oesophagus. Now I know what to do. I still need the surgery, but by changing my diet, this might help so I doesn't reoccur. What I don't understand is that I told her exact same things that I've told all the other doctors.... 


She thought I was too skinny though and need to gain weight. Not happening! But I will start drinking almond milk and eat more vegetables. She also told me my diabetes could come back since I had it while pregnant. Nice. It feels like I am getting closer and closer to figuring out the cause to my problems at least. A bit overwhelmed, but happy to meet a good dietitian.


My surgery has been sat to February 9th. And in April I will have a 24 hours test with a tube down my throat to my stomach to see if I have reflux. Because I am refusing to keep using reflux medication just because my GP thinks that that is what I have. Medications have side effects, so why take them, if the problem has not been proven.

Rock Climbing

 On Saturday the boys went to a Rock Climbing birthday party.

Here is Mattias climbing

 And this is Marcus.

Pictures from Norway

The snow had melted right before we arrived Norway, but the boys still had fun sliding on the ice.

Mid afternoon and the sun is going down already.

We drove to Frognerseteren to find a good snowy hill.

Darren and Mattias.

Opa Dick and Marcus.

Darren and Marcus.

A happy Marcus.

The view from Frognerseteren with the Oslo fjord in the back.

Decorating the Christmas tree.

This is from my Mormor (grandma).

Final product, done by the boys.

Daniel, my nephew.

Celine, my niece.

Øyvind, my brother, and Mattias.

Finally Christmas Eve. Daniel is waiting patiently for Santa.

Mattias said in Norwegian that this was NOT the real Santa. The day after he wondered when he was going to get his gift from the REAL Santa.

The whole family gathered at my brothers house, with his wife's family too.

Papa reading the instructions on how to get Francesco to work. This was Marcus' favourite gift this Christmas.

Mormor, my mom, invited all the grandchildren to "Hopp i Havet". It was incredibly fun!

Mattias' biggest wish was to get a globe puzzle for Christmas. It combines all his interests: puzzles, countries, maps, flags and the solar system.

My dear friend Yvonne and her two sons Leo and Linus in front of the castle in Oslo.

Guro and Ingrid. The daughters of my dear friend Christine.

Marcus, Mattias and Jørgen, Christine's son, on the morning of January 1st.

We woke up to 15 cm. snow and went to Frognerseteren again with Christine and her family, and also my brother and his family.

Mattias and Jørgen having a blast.

Hege and Marcus.

Jørgen, Christine, Darren and Marcus. 

Mattias surfing on his stomach. He was getting pretty brave at the end.

Bendik, Christine and Jørgen.

Mattias and Marcus.

Øyvind, my brother, and I.

Christine and Hege.

It was the best ending of the holiday. Spent with the people I care the most about and lots of new snow.

From a Child's View:

Marcus in the car this morning: "mama, look at the sky. It looks like the reflection of earth. The clouds are countries and the sky is the water".

"Flag Genius"

Mattias has drawn 57 flags and glued them on to a black card board. He can name all the countries the flags belongs too. Pretty impressive we think. We have a video of it, but the file is unfortunately too big to upload to the blog.

Update

Just if someone read my Facebook and here and wonder why it says 15 Heimlich Maneuvers one place and 10 here it is because the people doing it to me told the medics that they had done about 15, but thinking back after I don't think it was that many.

I went to my doctor today, but she didn't have time to deal with me, even though I had an appointment, but she took the papers from the doctor in USA, and will fax them to the ENT and GI doctors I have already seen here. She said she would also get me to see a dietitian.

I had to take Mattias to the ER this morning. He had fever, complained of pain in his chest and legs all night, and now he has a headache. The x-rays of his lungs were clear, but the respirologist didn't want to take any chances on this turning into another pneumonia and started him on antibiotics. I hope he will feel better soon.

I have gotten two huge cold sores on my upper lip in addition to all this other stuff, and I am still pretty sore in the whole body after the anesthesia, so I really could need a break soon I feel....

Ambulance Trip and Surgery in USA

For a while now I have had plans to go down to the states and do some Christmas shopping, but every time I was going Mattias either got hospitalized or had to go to a doctors appointment, but on Friday I finally found the time to go down. I left early, so Darren took the boys to school. When I got to Bellingham Fair mall I started shopping at Target and got quite some shopping done. It was already 11:30 when I dropped the stuff off in the car and I went to the food court. After three bites of calzone a piece got stuck in my throat. Apparently I got a bit cyanotic (problems breathing) and people came to help. I wrote on a piece of paper to calm down, that I have a condition and waiting for surgery, and that the piece of food would go down usually between 10 to 30 minutes. I also didn't want to go in an ambulance, but after one hour I wasn't getting any better, rather worse, by then I had had over 10 Heimlich maneuvers done to me - so you can imagine how sore I was. And the paramedics decided to take me to the hospital. For a total of 7 hours I tried to get the piece up or down. I was given muscle relaxant medication by IV, but the piece was totally stuck. An ear, nose and throat doctor came and had a look and couldn't see anything and, as the doctors before here in Canada, he said the piece of food was probably not there anymore, but that I was having reflux spasms. This is what I have been trying to tell the doctors here for over a year now is not the problem. The ER doctor came to tell me that my bill was probably around 7000 US $, and further procedures would cost more, but since it was Friday they could not get a hold of my insurance company to see if I was covered. Darren had by this time arrived at the hospital. I was then met by a GI doctor who said he would like to go down with a camera and look at my esophagus. This would probably cost somewhere between 8 to 10 000 $. I told Darren to drive me to a Canadian hospital, but as I was trying to move out of bed I could feel my breathing getting difficult again, and I thought there is no money worth saving if I might die on the way to Canada and I asked to have the procedure done. Half an hour later I was rolled down to the operating room. Two hours later I woke up feeling a lot better. There was indeed a piece of food stuck in my throat (I have pictures to prove it), and the GI doctor had managed to push it down to my stomach. He had however not been able to look down my esophagus, because the smallest camera they have for an endoscopy is 8 mm. My esophagus is even narrower than that. It is suppose to be about 30 mm wide, and also be soft and flexible. Mine is less than 8 mm, hard and stiff, and has some rings there. I was diagnosed with something called Eosinophilic Esophagitis. It is apparently often wrongly diagnosed as reflux or spasms, like every doctor has told me before. I have been so frustrated that they have not believed me when I have told them my problem. It is a rare condition, and it is more common in men than women. Everyone that has it also has asthma, lots of food allergies and psoriasis - and I have it all. The doctor also did a biopsy, and the result of that I don't know yet. There is not so many ways to treat this. There are some pills, which I of course can't swallow. But I will start to use the same steroid puffer that Mattias uses: Flovent, but instead of inhaling it I am suppose to swallow it. Not so easy. I am also suppose to stay away from a bunch of foods, which is not easy when I already have some many limitations because of my allergies. These are the foods I should try to avoid: milk, eggs, peanuts, shellfish, peas, beans, lentils, beef, chicken, fish, rye, corn, soy, potatoes, oats, tomatoes, wheat, chili, curry and preservatives. I mean what is left to eat? Vegetables and fruit I guess. I also have to try to make my food as smooth and liquidity as possible.


Later in the evening we drove home. But today Dale took me back so I could get my car. Darren took a taxi yesterday to the mall and drove the car to the hospital. I was of course not in any state to drive it home last night, so we had to leave it behind. It was a long line up at the border today, but we eventually got through.


The doctor told Darren yesterday that he had not dared to try to widen my esophagus yesterday as the narrowing starts quite high up and is very close to my breathing tube. So I now have to contact my doctors here and see where we go from here on. I feel so relieved though for having a diagnosis finally, and someone that believed in me. And hopefully my insurance will cover the cost of it all. Oh my, I really do hope so!!!


I feel good... (well, not really, my whole body, especially my back, chest and thorat is in pain) but I do feel happy. I was able to sing with my choir tonight, even did a good solo, I am alive, I have a great husband and two beautiful children, I am back working part-time. Soon I will see the rest of my family. And even though I feel I have quite a few challenges in my life, I choose to think positive and be grateful for what I have. And Christmas makes me appreciate that even more. ♥  

Mattias' medical update

Last week we saw Dr. Steinberg, Mattias' psychiatrist. She was worried that one of the reasons why Mattias has been so sick this fall is because he is internally stressed by me going back to work. Explaining that people often have lower immune system, get ulsters etc, when they feel stressed. This was quite the blow to my face and I felt like a terrible mom. I really value her opinion, and lots of thoughts went through my head; should I quit, was one of them. Darren said to me that he doesn't think that me going back to work has impacted Mattias so badly, and it would be sad that when he is a teenager if I felt  some recent towards my kids for taking over my whole entire life, and also any kid would have to adjust to a mom going back to work. And I truly love working, but I have told work that from now on I will only work two days a week. I also talked to school and his babysitters, and no one has felt that Mattias' anxiety level has increased, but you never know how he feels inside though, because Mattias never shares his feelings.

On Monday we had a check up with Dr. Human, Mattias' cardiologist. I told him of Dr. Steinberg's opinion, but he said that in these two pneumonia cases he actually thinks it is more the physical anatomy of Mattias that has caused the problems together with catching some bad bugs. After all seven kids were away from Mattias' class that same week he was hospitalized. Dr. Steinberg is worried that Mattias is not emotionally ready for another heart cath, and Dr. Human think that from what he saw on Monday Mattias can wait a bit longer. It is often recommended to have procedures in early summer anyway when there are less bugs and infections going around. So if Mattias stays healthy, we are looking at another heart/lung cath in May probably.

Then yesterday we saw Dr. Phang, Mattias' pediatrician (our Guru). He too agreed with Dr. Human, but values Dr. Steinberg's opinion of course. He told me that the respirologist, which we are seeing next Monday, has concluded that Mattias has "Chronic Bronchitis" caused by being on breathing machines over several periods after surgeries when he was younger. In combination of just having one good lung, high venus pressure, because of just having half a heart, and two stents in his left pulmonary artery, this is likely to cause problems in his right good lung and also develop secondary pneumonia when he catches a cold or infection. From now on Mattias will be put immediately on low doses of antibiotics when he catches a cough or cold. This is because we see that it seems to always lead to pneumonia and we need to start to treat him earlier, before it goes as far as getting into his lungs. Mattias will also keep taking diuretics for now to help with the fluid problems that his kidneys and liver don't seem to process properly when he gets sick. This will also stabilize his electrolyte etc.

So I can't say I was too happy to find this out about his lungs, but at the same time, I kind of already knew all this, we just didn't have the diagnosis for it. It has been frustrating to go to the ER, just to be sent home, and then five days later Mattias has been admitted for pneumonia. This has happened three times since June, so I am glad the doctors actually have decided to treat him earlier, even though you don't want to over use antibiotics either. Being on oxygen or other breathing machines like the BI-pap that he needed in ICU, is not good for the long terms for the lungs either.

Mattias also had a bunch of tests done for his immune system when he was hospitalized. Over all his numbers were okay. Some were slightly abnormal, but not so far off that it rises big flags. So we just have to keep being careful and good with hand washing and staying away from bugs and sick people. Easier said than done...

Marcus is "steeling"

Marcus came to me and said this: "Mama I got some money and put it in my piggy bank". 
Me: "Oh, who did you get money from?" 
Marcus: "I just took it out of your wallet!"......

Is Santa real?

Mattias asked: "is there more than one Santa? He looks different every time I see him. Maybe he shaves he beard a lot. How can he live on the North Pole? It is no country there, just ice. What if the ice melts then? Hmmm...."

Flying with Santa

 Yesterday we had a won a trip with Santa and Jazz Air for handicapped children.

Fin from The Canucks met us at the airport.

 And then Santa arrived in his own plane.

 That is Santa sticking up from the plane's roof.

(See video below)

 Two excited boys.

 Santa brought some pilot hats from the plane.

Santa sang and entertained, we got food, and had a great trip. Santa even sang the safety instructions in a funny Christmasy way. The boys really enjoyed their trip.

Santa is coming to town...


I had an allergic reaction to the first bite of the food, and got quite sick and very nauseous, so the last half of the trip I just had to keep my eyes closed and focus on not vomiting. Didn't really want to ruin the trip for anyone, or make a fool of myself.