Make A Wish!!!

Sam, as many of you know, has a life threatening illness called Brugada Syndrome. We thought that after such a hard year last year (with the surgery AND bringing home a new sister to steal his toys), it would be a great idea to apply to the Make A Wish Foundation and see if he could get his wish.

The lovely folks from MAW came over to the house and asked him his wish.

"I wish to take a train to see Peter Pan."

It was very simple, but extremely detailed. In fact, they said it was the most detailed wish they had ever received. They weren't sure they could accommodate it, because wishes need to be only ONE thing.

Also, they had never had a child with a heart arrhythmia before (usually it is plumbing issues, not electrical). They had to get his doctor's recommendation to make sure he qualified, but Sam's amazing doctor called me after they contacted him and said he thought it was the best idea I'd had yet.

And, after much deliberation, they decided to GRANT his wish!!

We are taking a limo to Charlotte and then a train ride to Raleigh, where we will then get another another train (have our own beds!) and spend the night on our way down to Orlando. There we get to stay at the Give The Kids The World Village and park hop all week!

We are so excited about this wish and this trip! Hopefully I will begin feeling better soon (12 weeks tomorrow and I just had my worst day yet!!) and the trip will be all worth it.

Bill is a bit concerned that Sam will be too young to remember this trip, but I am convinced that this is going to be one of the highlights of his childhood. Every time he is older and thinks back to his fondest memories, he'll remember this trip and NEVER be able to attain the amount of fun and great times that he had (is about to have).

I can't wait!!!

Update

I am officially ten weeks pregnant today and feeling every bit of it. It is taking me a lot of energy to do anything and everything these days, but it's a good thing I have so many friends to support me.

So far so good with the pregnancy, now that I've finally started taking medication for my morning sickness. Sam and Carolina are well too, and we're finally enjoying some good weather too.

I hosted a big Easter Scavenger Hunt at our church on Saturday. It was so much fun - and the very first one I've ever been a part of. HA! Carolina and Sam really enjoyed themselves.

Hopefully I'll have more pics soon. If I can just get myself off the couch!

Coming in November...

Pray with us for our new addition! This child, completely unexpected, has a 50% chance of having Brugada Syndrome. We won't be able to tell in-utero, but we will be able to learn (hopefully) quickly after giving birth.

Our miracle tree frog - with arms and legs and a head that are actually visible!

Amazing.

Soy

Ever since being diagnosed with all these food allergies, I have done a lot of research regarding each of the products.

I have been completely shocked by what I have discovered. I'm sure I'm just now getting on board with something that each of you already knows, but I'd still like to share what I have learned.

I'll start with my biggest allergy: milk. Apparently my allergies are IgG allergies, which means I have built up some antibodies to each of the products I'm allergic to. But, it's different from an IgE allergy, which causes a person to go into anaphylactic shock in the end. This particular allergy, an IgG allergy, causes problems like, fatigue, dark circles, nausea or other similar problems.

When I began looking at milk substitutes, I learned that soy milk should not be an option for any of us. My neighbor was the first to tell me that unfermented soy milk has many side effects and issues related to it, and when I did some research, I learned she is exactly right.

We are constantly bombarded with marketing that boosts the healthiness of soy milk - it has extra protein, soy is supposed to be good for brain development, it is low fat and has tons more fiber than cow's milk. People also cite the fact that Asians have been using soy milk and soy products for many years and look how healthy they are!

Well, the truth of the matter is, in China they use FERMENTED soy products. Even soy milk, called dou jiang, is made from the juice of tofu. Tofu is already fermented and the liquid around it is packed full of protein and healthy goodness. In the US, when they make soy milk, it is made by crushing the beans and grinding them into a pulp.

"Beans are cleaned and soaked overnight, and then pureed. The solids (called okara) are strained out, and the resulting liquid is boiled for about 10 minutes. A little simplified, but that's the basic idea." [source]

There is no fermenting in this process. Why do we need soy products to be fermented? Check these sources to get more details, but essentially, there are enzyme inhibitors in unfermented soy products that prevent our bodies from breaking down food and nutrients properly.

http://preventdisease.com/news/09/073009_soy_lecithin.shtml

http://www.buzzle.com/articles/soy-milk-dangers.html

http://www.quantumbalancing.com/news/soy%20dangers.htm

Those are just a couple of sites I have found in my detailed research. The amount of marketing available for pro-soy products has amazed me, but as I have read, it is very intentional.

Going back to the aforementioned milk allergy, I am supposed to ingest small amounts of milk every day in order to build up my tolerance for it, but I am not supposed to ingest large amounts. I have noticed my nose runs more when I ingest lots of milk products and the (ever present) circles under my eyes DO get darker.

But, my alternative to milk will not be soy milk. It is almond milk, preferably homemade because manufactured almond milk has (less than 1%) soy lecithin in it (a product in almost every processed food in America). If you'd like to make your own homemade almond milk, check this link out that my brother sent me. It's delicious and you can make it for about $1/quart.

I think that about scratches the surface.

The Three of Us

This is an older photo, but I wanted to post it anyway. My kiddos are so cute!

Lainey

Pray for one of my best friend's one year-old who is having an MRI tomorrow morning. Here is the info about it. I just know she's going to do great, but I also know it's scary to have any medical procedure done on your child.

Atlanta

Our family just took a (much needed) trip to Atlanta for the last part of the week. We had such a great time going to the children's museum and the aquarium there, but we really enjoyed seeing my aunt, uncle and my two cousins.

Sam and Carolina travel so well, it really is a huge blessing. One thing I usually do before long trips like this is to put on Sam's Medic Alert bracelet, which states that he has BrugadaSyndrome and an ICD implanted. I cannot believe I completely forgot to put it on his wrist for this trip. I think I need to leave it in the car from now on, just in case.

Generally, when we're here at home, I don't make him wear it. He doesn't love to wear it, though he will, and all of our local doctors and hospitals know his situation. The biggest fear I have when we're traveling out of town is that we'll get in some horrible accident where I won't be able to share his condition and the medics won't know that he has the ICD. I even had one pediatrician once feel Sam's defibrillator and ask me if it was his liver! Based on that alone, I can only imagine what an EMT might do if they felt his belly and didn't realize it was a defib.

Despite my horrible fears when we travel, I can actually enjoy myself most of the time. I forgot to bring a baby carrier OR a stroller, so both the kids had to walk everywhere we went. The worst part is that I learned Carolina has outgrown most of her shoes. I brought four pairs with us and the only pair that actually fit were her snow boots! I'm headed to a consignment sale today to find new shoes for her. That kid is seriously growing fast.

Sam's famous quote of the weekend was while I was away. He told my Aunt Nancy, "hey, we are playing outside in the grass and I'm not wearing a coat AND I don't have to button up! Where's the snow?? There's no snow here!!"

I think we'd been on-the-mountain a bit too long! It was a nice break from the snow.

New Blog

Check out the new blog I designed and am helping to implement. I'm so proud of my girls at highcountrymommies.com!

In other news, Sam has a cold again. So far he hasn't presented with a fever, but has had a lot of coughing and other exciting things going on.

We are enjoying another couple days inside, as the cold and the snow have made it impossible for Sam to get out. However, we are fully intending on enjoying April, once it arrives, and excited about the possibility of seeing grass again.

This morning Sam was talking to my father when he was asked the question, "what have you been doing lately."

Sam answered by saying, "We laid in the grass and saw the SUN!!"

We obviously got off the mountain last weekend and enjoyed seeing the sun for extended amounts of time. It was quite balmy at 50 degrees in Raleigh on Saturday.

Here's hoping there will be more sun!!

SSN!

We got to go to Raleigh on Friday and get "off-the-mountain," which was so much fun. We spent time with my brother and his family - it has been WAY too long since we spent time together.

On the way to Raleigh, we stopped in Wilkesboro to apply for Carolina's social security number. We had all the paperwork needed (so much paperwork!), but learned that when she came into the US, immigration put her first name as "Carolina Rone" and left her middle name blank! So, now she is apparently (officially) Carolina Rone with no middle name. We have to call INS and get them to change it and then change her name on the new social security card too.

It's always something, isn't it? But, at least it's no big deal. I just need to make a few phone calls to figure out how to get this done.

Other than that - no news is good news!

We're very excited that March is upon us, even though we MAY get another bad snow storm, at least the end is near. I can't wait for Spring!

Car Seats

In light of a conversation I had earlier today, I wanted to share this about car seats.

Consider the car seat you have your child in right now. You can buy a 5-point harness car seat that fits a child up to 70lbs. If you can't afford it, there is help. See the website below.

The Importance of a 5 point harness car seat from Laura Bower on Vimeo.

Isn't it worth it to keep your child safe? Get rid of the booster and get a 5-point harness!

http://www.kyledavidmiller.org/

We Heart Shaun White

Shaun White was born with a congenital heart defect and had two surgeries before age one. Look at him now. GOLD MEDALIST!!!


Here he is just being awesome:

Snow Day Pictures

If you're a SAHM this Winter, then you know exactly what we have been feeling lately. Cabin fever, plain and simple.

I have tried so many different things to make me feel less apathetic, but very few things have worked. The main cure is just getting in the car and driving somewhere. Alas, the roads here are not always plowed properly and it can be quite dangerous. Besides that, everything is closed (including the library - who closes the public library because of snow???).

So, my dear sweet husband has come up with a ton of ideas. His best idea, by far, was to pull out the couch bed, put sheets on it, throw every toy we own on it and watch TV together (while Skyping with Sam's best friend for some of it). That gave the kids a totally different perspective AND we got to have a "picnic" in bed (crumbs were totally allowed). Bill is definitely brilliant. Sam has been begging for it ever since.

Bill also had the idea to move our old mattress (we bought a new one on Saturday) and move it to the living room. Fun was had by all (and until someone comes to pick it up, we will continue having fun, but in the basement instead).

Of course, going outside (if healthy) is another great way to cure cabin fever.

Sledding...yet another way.

Snow angels...Bill had a lot of fun with them this day.

(Time for a new snowsuit, Sam?)

But, when Mom is in charge...toothpick buildings (warning: very dangerous).

This project ended in tears and tantrums about five minutes in

(and after eating two marshmallows).

More snow. One of her legs is pretty deep - there is about a foot under her.

We've had another 9 inches since this picture was taken a couple days ago.

She seems very concerned with Sam falling down.

Bill said this Husky wanted to play pretty rough, but was really beautiful.

Unbelievably Rare Allergy

I don't want to bore you with details, but I did want to share how important it is to know your facts when you see your doctor for anything.

In this day and age it seems we have to be the ones leading and guiding our doctors in a lot of cases. It's not always true, as in Sam's case where his amazing doctor was active in seeking the cause of his febrile seizures, but in my case it is true.

Do you remember when I broke out into a rash, got a high fever and high blood pressure last year? Probably not, but I do.

I actually switched doctors, because my doctor thought I had Scarlet Fever even though I clearly did not. He treated me with MORE antibiotics, despite his initial thinking that I was actually allergic to antibiotics. I went to pick Carolina up in China with my body covered in this hot itchy rash, a high fever and a heart rate that was over 120bpm resting.

When I returned, after having been on a tapered dose of steroids for over six weeks AND going to a Chinese hospital every day for a week to get steroid shots (I seriously need to get checked for HIV at this point), I switched doctors.

I challenged my new doctor to figure out what was going on, but at this point I didn't have any symptoms. She ran all kinds of tests, but everything came back negative. She really rose to the challenge though, and believed everything I told her about my condition.

Then, in early January this year I got another sinus infection. I went to see her and she said NOT to take any antibiotics (she is of the mindset that antibiotics aren't always the cure, and for that, I salute her). She told me to take Mucinex-D and see how that made me feel.

By that evening, I was feverish and had turned red all over again. My skin was hot and itchy and I was panicking. I never felt like I couldn't breathe, though my lips did get really big, so I stayed away from my epi pen. I really struggled with whether or not to go to the ER, but chose to go to bed instead (Bill watched me like a hawk all night long, even waking me up every couple hours to take Benadryl).

My doctor sent me to an allergist. I started looking through my medicines to see what else I had been prescribed during those other two sinus infections and it was other medications with a D in it. I.e. - a decongestant. THIS time I did not take an antibiotic, but only a decongestant (like Sudafed).

I presented my thoughts to the allergist and he quickly waved them off. He said it was impossible because the molecules were too small in Sudafed. Instead, he had me tested for normal allergies.

It came back that I am highly allergic to milk and mildly allergic to soy, corn, eggs, trout, peanuts, mold and dog.

I didn't believe it.

After calling back three times and not getting the answers I demanded, I made an appointment to see the allergist again yesterday.

I insisted that I am allergic to Sudafed. He insisted that it is impossible. I insisted some more. After 40 minutes of insisting, he finally looked it up. (Seriously? How easy would that have been to begin with?)

What he learned shocked him. Thank goodness he is willing to learn something new though.

I have a very rare allergy to Sudafed that affects the central nervous system. It actually mimicks Toxic Shock Syndrome. Check this out. Every one of her symptoms were my symptoms.

HA!

The moral of this story is: trust your instincts!

Vegan Cupcakes

As I have eliminated eggs and milk from my diet (due to an apparent allergy), I have had to get very creative with my baking.

Basically, I eat veggies and some sort of meat. I'm also trying to limit the amount of soy, corn and peanut butter I ingest, so that limits my ingredients list. In other words, no tofu. Actually, by limiting all of that, I'm only able to eat vegetables and meat. It's amazing to me how many products of soy in them. If not soy, then corn. If not corn, then eggs or milk. It's always one thing or another.

Last night I decided to try a Vegan cupcake recipe. I have really never eaten something that was Vegan that I enjoyed. I mean, Vegan items are usually palatable, but once that word "Vegan" is attached to something, I become hesitant.

But, last night we made this cupcake recipe and Bill and I were both blown away by how deliciously rich they were. We made our own almond milk the night before and used it in place of the soy milk. All in all it was so delicious. Try it and see!

新年快乐!!!

In the seven years we lived in China, we never once celebrated the Chinese New Year IN China. We were always in Thailand, celebrating with 华桥 - overseas Chinese.

We were unable to celebrate Chinese New Year in the traditional way yesterday (tons of fireworks and fun), but I am taking my kiddos to the New Year's celebration at the library this week. This IS a big deal and as part of both of my children's birth culture, I'm going to do everything I can to keep that culture a part of their daily lives.

I'm still attempting to teach both of them Mandarin. Sam started randomly counting to ten yesterday and Carolina constantly says "come here" in Chinese.

What a blessing to have learned the language IN China. I'm doing my best here!

Warm Weather

We had another inch or so of snow last night. I don't know why it surprised me, but it did.

I realized a couple days ago that Carolina hadn't been out of the house in over three weeks, except once to go to the pediatrician's office. I think we've been hit pretty hard with this whole Winter thing. Finally the kids are starting to feel better...and that's when I wake up with a sore throat.

You can't win them all, I guess.

I was thinking this morning about how much I long for warmer weather. But, instead of dwelling on the incredibly wonderful things about Spring or Summer (especially here in the High Country!), I am going to make a list of all the negatives about warm weather. Maybe it will make me happier to stay in this season...

1. Our neighbors leave their dogs out all night, and they bark all night.
2. Other neighbors (college students) hold crazy parties that often get pretty loud.
3. The sun comes up really early in the morning, forcing my children to wake up earlier.
4. One of our neighbors is a professional landscaper, which equates to constant lawn mower sounds and weed eaters.
5. We don't have air conditioning, which means we have to open our windows and enjoy a constant cool breeze...and the sunshine.
6. My kids aren't sick for long periods of time.
7. Fresh air. Fresh cut grass. Apples from the apple tree. Pears from the pear tree. Raspberries from the raspberry bushes. Blueberries from the blueberry bushes.
8. Hikes with both children. By myself OR with friends.
9. Picnic lunches outside.
10. The Tot Lot.
11. Windows down in my car.
12. Swimming.
13. Skirts, shorts, t-shirts, cute sundresses, sandals, flip flops, bathing suits, the beach...

This is getting me nowhere. I guess I'll go dig the car out now and maybe we can take both kids to the dump. Hey, it's better than staying in, right?

Sam's Story Published

Check this out to read about Sam's story, as we continue to celebrate CHD Awareness Week, 2010.

Congenital Hearts Defect Awareness Week!

Today marks Day 1 of CHD Awareness Week 2010!

You may not know, but congenital heart defects are the number-one birth defect that affects approximately one in every 125 babies every year in the United States alone.

We have been personally affected by a CHD, though Sam's is not a very common one. Sam has an "electrical" issue, whereas most of these CHDs are "plumbing."

There is a very large community out there with children who have been affected by a CHD. One way that we found support was through www.littlehearts.org, an online support system who lead us to a friend whose son also has an electrical defect, as well as a plumbing issue.

Sam was most recently affected by his heart condition (Brugada Syndrome) in August 2009, when he had to have surgery to move a lead that wasn't reading correctly. His defibrillator has been functioning perfectly ever since.

Sam's very rare condition affects him when he has over 101.8F fever, however recently he has sustained over 103F for long periods of time with no repercussions. We are all hopeful that God has healed his heart! Only time will tell, but we will continue to take precautions. One way that we know his heart is not fully healed is when he has an electrolyte imbalance. When that occurs, his heart can go into an arrhythmia and his defibrillator will shock him if it is sustained for longer than 30 out of 45 heartbeats.

Even though we didn't know about his condition when he was born, but only found out when he was not quite 11 months-old, I wouldn't change anything. He is an amazing child.

I hope that we can bring some awareness to CHD this week, and especially Brugada Syndrome.

HumpDay

It's finally Wednesday and Sam has broken his fever again. Last night it was high, but this morning he seems to be fever-free. He still has a terrible cough that causes him to gag and even vomit sometimes, but it's not as persistent as it was.

Carolina, on the other hand, has 101F fever.

I think the average child gets sick every 12 days or so...I guess we're better than average this Winter, but it still makes my stomach turn when these kids get sick.

I saw an allergist last week and was diagnosed with all kinds of crazy allergies. I have been so confused about the entire process and the diagnosis. I initially went to see him because of that strange hives/rash thing I have gotten a couple times. I had another occurrence just three weeks ago, in fact. But, the office manager and the nurse have told me that I am highly allergic to milk and mildly allergic to corn, soy, egg, peanuts, dog dander and mold. I could have told you about the mold, since I get migraine headaches if I'm around any, but the rest is a total mystery to me. I drink about a gallon of milk every five days, on my own, and eat lots of eggs, peanuts, corn products and soy products.

I still have been unable to see the actual doctor and the office manager isn't returning my calls right now. She had suggested that I have MORE tests done and start taking a serum that would help me tolerate the things I'm allergic to. Insurance doesn't cover the serum, but she says it would be cheaper the co-pay of allergy shots, for which I am ineligible.

I have eliminated milk and eggs from my diet, and will continue that for six weeks, but I don't see how this is going to help with those strange hives/rash that I get when I take a Sudafed product.

It's all a mystery to me. I have gone through the local grocery stores to see if it is actually POSSIBLE to eliminate the rest of that stuff from my diet and it is obvious it would be rather difficult. I can eat meat and vegetables, but nothing else, I suppose.

So, one week down and five more to go.

Great Weekend

It snowed about a foot at our house over the weekend. The title of this post is misleading, since we spent the entire weekend indoors just vegging out. Sam has taken ill, the likes of which I have never seen.

He's just pitiful. He's sort of up and down though, and right now he's having a high moment. But his fever has been pretty consistently over 102F since yesterday. The doctor thinks it's just a different manifestation of the same bug Carolina had last Wednesday. I just hate it when my kids are sick. I've had to force Sam to wear no clothes and lay in our bed to watch movies on Netflix (I still love having a subscription, by the way. One of the best gifts I ever got from Bill was this Netflix subscription).

In other news, Bill and I are working through Dave Ramsey's Financial Peace University. We're thrilled to be doing this with our church. I've already learned a lot and, though we don't have debt besides my car and our house, it seems to be just the right program for us. Not everything fits our situation perfectly, we greatly desire to have peace when it comes to finances.

Back to the sickie...who doesn't seem to be having any heart troubles at all from this. Praise God! Maybe God really has healed his heart!