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Wednesday, 30 September 2009

12 year old speaks out on abortion

Just had to share this brilliant young lady's 5 minute pro-life speech. This young Canadian took it all the way to Parliament Hill incorporating more Canadian facts and addressing the point of handicapped fetuses.

This reminded me of my three minute speech when I was sixteen... I won first place in Manitoba speaking out on the reality of being a teenage mother. As luck would have it, that year they did not have nationals. Speaking from the heart was important to me (in case you have not noticed, it continues to be) and it was truly amazing to discover that it was so well received.

So enjoy the eloquence and poignant remarks of this young woman. I was truly impressed!

The ups and the downs

Do you know the sheer irony of feeling as though my life with Ethan is a roller coaster ride is that I have NEVER been on one... unless you count the kiddie one at Tinkertown!

We had a glorious four days (and nights) of Ethan sleeping nine hours straight. He looked beautiful and slept soundly. Truly answered prayer; however, a couple of nights ago, I heard him stirring a lot in his sleep and hoped he was just being restless. The night before last, he woke up a couple of times but settled relatively easily after nursing. But last night, he barely slept. His eyes are red rimmed again, the itching is overwhelming him again and the welts are beginning to return.

So? Four days on two weeks off? Is that sounding like the pattern here? We brought him for another chiropractic adjustment today so we'll see how he does tonight. So far, not a peep out of him... but I have learned not to hold my breath!

I am just so glad we get to know those glorious four random days of healing. Duane and I can't stop caressing his soft cheeks when he is well.

So we continue to plug away at whatever we are trying to accomplish which is overall health and wellness. This experience has certainly made us count our blessings for the health we each know around here! What a gift it is!

And here's hoping you are all blessed with the gift of health, too. Take care!

Wednesday, 23 September 2009

Singing in the rain!

As you can see from this video, Ethan has had a down right miraculous recovery these last two days! I am reminded of the very signature at the bottom of my emails "Life is not about waiting for the storm to pass... it's about learning how to dance in the rain." Good things always come out of what appears to be a bad situation...

I had done something damaging to my left shoulder Tuesday morning that left me unable to pick up the kids or work in the kitchen. We headed off to the chiropractor where they took some x-rays and gave us all an adjustment. It has been nearly six months since we've been in. I can't understand why we don't make it a MANDATORY event because every single time Ethan gets an adjustment, he sleeps SOOO well! Last night, he slept for 9 hours straight!!!! He has NEVER done that before! And yesterday, he had a three hour nap in the afternoon... another first for him.

The sleep has been an obvious God-send because his body has responded with incredible healing. His appetite is ravenous and I just can't keep up with nursing and shoveling what few foods he can eat down his throat!

The other incredible help is Glaxal Base Cream. We have used countless creams claiming to have miraculous results. We watched eagerly as each one cleared his skin for a few days... but after those few days, it is as though his skin became immune to the cream and it would flare up with a vengeance. We stopped spending the mega bucks on these creams and stuck with what the allergy specialist & pediatrician recommended: Vaseline Creamy. But the problem with Vaseline Creamy is that while it replenished some moisture to his good skin, it seemed to really aggravate the flared up spots. Finally we found Glaxal Cream at Costco, 450g tub for $15 (wayyyy more affordable) and his skin is responding better to this than any previous creams! And it is NOT a pretroleum-based product... woo hoo!

So, combination of prayer, chiropractic adjustment, sleep (for the first time in his life), Glaxal Base cream, small dose of hydroxyzine (antihistamine), and maybe even the tapioca all seem to be contributing to a miraculous healing.

It's amazing how you notice the sun shining when these types of stressful times finally pass. It is BEAUTIFUL outside! The leaves are bright with yellow readiness to take their leap of faith, the air smells crisp with the promise of a swift autumn... even the cats appear chilled by another summer come and gone.

I forgot to notice these things lately.

But not today. Today is beautiful, marvelous... down right FANTASTIC! Thank you for your positive feedback & gracious prayers. I look back at the last entry and acknowledge it as that moment when you first stub your toe... you yelp, it hurts like the dickens, you hop around like an idiot feeling sorry for yourself but before you know it, the pain subsides and you make a mental note not to make a mad dash near the corner of the bed ever again!

So I choose to learn from these last two mistakes and thank God that we are two steps closer to a healthier Ethan. That is ALWAYS a good thing. Much love to you all! And of course, God bless!!!

Monday, 21 September 2009

Another answer, another costly mistake

First and foremost, thank you for your prayers in finding answers. They have led us to finding the dairy culprit in our coconut milk powder and just now, they have led us to discover the mystery behind Ethan's wheezing.

His Protopic medication...

First of all, this website has great info on the ointment:

You'll note the comment about Protopic at 0.03% not being recommended for children under the age of 2 AND moreover, that the 0.1% strong dosage is NOT to be used on people under the age of 16.

Well our delightful dermatologist prescribed the 0.1%.

We have not used it on his face for several weeks now in hopes of giving him a break from these ointments but tonight, his face was just too bad, we decided to administer some in hopes of gaining some control over the eruptions all over his face. I smothered a good portion on his face & forehead and by the time I started putting his bedtime sleeper on, he was already wheezing.

Then it dawned on me... the only thing different tonight was applying the protopic on him. Then I recalled all those evenings after bathtime, just before bed, when he would wheeze while nursing and cough throughout the night... those were the nights I used the protopic!

So you'll also read the warning about overdose & allergic reaction: difficulty breathing.

Once again, my ignorance, my lack of time to do enough & proper research BEFORE giving Ethan something he has been prescribed has led us to an O.D. of protopic... a drug being linked to skin cancer.

These have been two blows to me that have left me wondering if I am competent at all in being Ethan's advocate, in seeking what is best for him, in being his mother. These have been two blows to me - where I have been the one to make the costly mistake - first with the milk and now with OD-ing my son on a dangerous drug.

I know, this sounds like one big pity party over here but I just can't handle this feeling of wanting to protect him only to discover that I have been the one causing him harm.

And to make matters worse, Protopic lowers your blood cells that help you fight infection... perfect timing with the threat of an H1N1 epidemic, eh? Why not vaccinate him? Well, we'd have to make sure it was the vaccine that did NOT contain the mercury AND the egg protein (due to severe allergies).

Speaking of allergies, we just got some additional results from Ethan's RAST blood test - he came back highly positive to fish, flax and peas (confirming my suspicions) but negative to carrots, chicken & beef. I have also been suspecting kidney beans and will stay away from most legumes until more tests can be done.

Somedays I feel like we're going to lose him. This precious little boy with a life story to tell will be taken from us. I know it's morbid and pessimistic and maybe it's just the lack of sleep starting to get to me but I watch his precious little face look up at me as he flashes that toothy grin (hey, eight teeth is toothy to some people)... and my breath catches in my throat as I wonder if I will have to know life without him someday.

He is too PRESENT to be taken. He makes us laugh, he makes us cry, he makes us LIVE with purpose. But I fear his weakened immune system and the increasing list of allergens. I fear more costly mistakes and the unknown.

Just yesterday he learned how to shake his head "no" and to nod "yes". He LOVES his grapes just as Melina & Anika did. If I talk too loud or sing too loud, he covers his ears! But if I sing a tune he likes, he immediately pipes in as though he knows the words...

This is how he lives in my heart. I would watch others eat all the food in the world while I lived off of rice alone if it meant I could still nourish him through my milk. I would continue without sleep as long as I have to if it means he is still with us.

I love him so much as though he himself encompassed unconditional love.

I pray this is just my roller coaster ride of emotions dealing with the lows. I continue to have faith that God's purpose for Ethan will include longevity and a great wisdom about health to share with others. I choose to see a strong and patient man whose compassion for the suffering will be inspiring.

I see my son, a man with purpose, whose rocky beginnings will be a testament to the mountain of faith he will have acquired. "Blessed are the weak" Jesus said, and "blessed are those who suffer."

So blessed be you, my precious son. Rest peacefully as you heal and grow stronger that you may praise God with us for the grace and mercy He has shown you. And may He grant us wisdom in the privileged role of being your parents. In Jesus' precious name, I pray... Amen.

Saturday, 19 September 2009

Could it be linked to cystic fibrosis?

As I continue to do research on Ethan's symptoms, I keep coming across the following diseases: crohn's disease, celiac, chronic pancreatitis, gastric or small bowel resections, fistulas, colitis & biliary obstruction AND CYSTIC FIBROSIS.

Here is an excerpt that just shocked me:

CF is caused by a mutation in the gene cystic fibrosis transmembrane conductance regulator (CFTR). The product of this gene is a chloride ion channel important in creating sweat, digestive juices and mucus. Although most people without CF have two working copies (alleles) of the CFTR gene, only one is needed to prevent cystic fibrosis. CF develops when neither allele can produce a functional CFTR protein. Therefore, CF is considered an autosomal recessive disease.

I have noticed since Ethan was a baby that he just can't seem to sweat and clearly he has issues with digestive issues and more recently sinus issues (assumed it was just allergies). Mind you, he does not have the serious pulmonary issues associated with this condition... but I sure found the info about sweating interesting.

ARGH... that's the scary thing about research... so many symptoms can be common but I literally stopped breathing when I read the comment about sweating. That has always been an issue for Ethan. Keep praying! We'll find the answers, I have no doubt God intends for us to find the answers. Thank you so much for your help!

Stupid, stupid milk!!!

I think I may have found an additional culprit to Ethan's exasperated state of discomfort and pain...

In addition to being outdoors all afternoon during the worst allergy month of the year, in addition to eating chicken that contained fragments of Ethan's major allergens I have also just read on my Wilderness Family Naturals powdered coconut milk that it CONTAINS MILK!!!!

Dumb, dumb, dumb people!! Why on earth do you have to add MILK to coconut milk powder??? And dumb dumb me for not reading the label! For assuming that if it says "coconut milk powder" that this is all it will contain! I am so livid with myself. All those stupid hours and hours of reading labels and I forget to read this one???

I had made a cauliflower curry dish on Tuesday for lunch and used that coconut milk powder. However, I also use that powder when I make my butternut squash and pear soup, which I had noticed seemed to aggravate him but no flare ups that equaled this one.

So is it the powder alone or the combination of all those factors mentioned above?

We are introducing organic tapioca today certified gluten-free & vegan so we don't have to worry about his top allergens. Duane is feeding it to him as I type and he loves it. But the clincher with allergies is that you never react the FIRST time you eat something... your body makes a note of the new protein by creating antibodies the first time you eat it. Any subsequent times the allergen is eaten, the body recognizes the protein as a danger & reacts to it by creating a ton of histamine. That's why it takes 4-8 days to introduce a new food before ruling it out as an allergen. And even then, allergies can develop down the road.

But let's hope that Tapioca will be one he can eat because at least I feel safe with that company's certifications. I have also just subscribed with Canadian Food Inspection Agency to be emailed ALL notifications regarding allergy alerts for dairy, gluten, soy, nuts and fish.

There is so much to research... Ethan has issues with any and all fat-soluble vitamins A, D, E and K which leads me to the gull bladder (which Duane's father & sister had removed... a hereditary possibility?)... allergies can be linked to Vit B12 deficiencies which directly correlate with the inability to process those fat soluble vitamins... Histamine is a neurotransmitter manufactured from the amino acid histadine, and histamine secreting nerve cells are located in the hypothalamus, a suspicion my sister had early on. Increased levels of histamine can also be due to a vitamin C deficiency which I recently found out that high doses of vitamin C during pregnancy (which is what I was taking) creates a high need for the neonate post birth.


I can't read fast enough, I can't find enough free time to make the necessary links and it feels like with every second that I am NOT piecing this together, Ethan gets worse.

Anyways, it can take up to two weeks for milk to clear a person's system so I have a feeling that we're in for a rough couple of weeks. I will keep you all posted on whether there is great improvements or set backs along the way.

At least we have discovered a new culprit and can rid our house of it, too. Dumb milk in coconut milk powder... so not-smart! Ethan has just been put to bed as has Anika (bless Duane for looking after the little ones while I research & update) so I will continue down this long road of endless research.

Wish me luck!!!

Friday, 18 September 2009

Getting worse

I was hoping we were over the worst with whatever bump in the road this has been but tonight, despite a bath in hydrogen peroxide, several latherings of Vaseline Creamy today, and a wet wrap tonight, Ethan is writhing and clawing at his neck, his ears, his chest - everything! If he had the means, I don't doubt for a second that he would rip his own skin off.

I can't stand watching helplessly! What the heck went wrong? This is the worst he has been since winter and I am scared, so damn scared, that we are gearing up for another rough bout.

As I type this, Duane is upstairs in his room trying to console him. If he continues to lack sleep in addition to all of this, we will quickly find him in serious trouble.

I think we are going to reintroduce the antihistamine meds. We had been treating his eczema spots with the Betamethazone hydrocortisone cream for weeks now and even that has not been able to keep his flare ups under control. Even as I nurse him, I can hear his stomach churning as it used to do when I had eaten an allergen. But I have not eaten anything out of the ordinary lately so I don't understand what has gone wrong!

This will be a long and painful night (not only for Ethan).

Thursday, 17 September 2009

Is there no reprieve for Ethan?

Here we are once again...

Sunday we had a huge annual Vaags BBQ gathering outdoors and we delighted in celebrating a "growing" family based on the five siblings (and their parents) who journeyed here from Holland sixty-one years ago. Five siblings have turned into a gathering of nearly 130 people! Can you imagine knowing that you played a part in the existence of 130 people? Never underestimate the significance of your presence here and the mark you are meant to leave behind!

The weather was beautiful, the food looked amazing (I could only eat the egg-free, mayo-free potato salad that I brought and some of the fresh veggies but the rest looked sooooo good!!). Ice cream cones were served for the kids along with dozens upon dozens of baked goods.

I behaved and did not eat ANYTHING other than what I COULD eat. When cheating on this diet means four days of Ethan screaming and writhing in pain, nothing looks yummy enough to be worth watching someone else suffer because of it.

Ethan was beautiful for this event and he had even slept SEVEN HOURS STRAIGHT the night before. Oh yes, this was a glorious day to be celebrating indeed! Being an afternoon gathering, Ethan missed his nap but remained in pretty good spirits. When we got home, the evening progressed as it has the last few days and we figured all went smoothly despite being surrounded by all of his allergens.

However, that night, Ethan was quite restless again and when he woke up in the morning, I knew right away something was not right.

First of all, his mood gives it away. He is usually happy, energetic (a little too energetic) and just overall in good spirits. But Monday morning he woke up just screaming and the day persisted with constant crying, whining, poor sleep and his skin breaking out.

To make matters worse, Monday night I bought a chicken from Costco looking for an easy meal due to the rough day we'd had. As I am about to serve it up, I read the disclaimer on the packaging stating "may contain fragments of shellfish, wheat, dairy, soy and or nuts."

Are you flippin' kiddin' me? It's a chicken! Do they let the chickens wrestle with the crabs before cooking 'em? Or do they bake some cookies before getting thrown in the roaster? Or hey, what chicken doesn't like a good milkshake before D-Day?

Too tired to make myself anything else, I trusted that the "may contain..." words were merely warnings to cover their own bums in the RARE occasion that someone MIGHT have a reaction.

Well, considering Isabel had a 0.2% chance of CMV affecting her as severely as it did, and with Ethan falling into the tiny percentile of children who are SEVERELY allergic to so many things, I should really take those "may contain" and other "small chance" warnings as down right predictions!

Monday night goes even worse than Sunday night. Tuesday all day I am trying to walk around the house with a crying and screaming Ethan holding on to my leg and Anika who is trying to negotiate "going outside, mommy. Skitoes are bad, mommy?" Yes, Anika, the mosquitoes are very bad.

Today, Ethan is the worst yet skin-wise but his mood seems a little better. We bathed him with some hydrogen peroxide only to watch all of his pussing open wounds turn white with signs of possible infection.

I can only imagine his threshold for pain. Duane suggested a wet-wrap tonight and thank God he did. Ethan actually relaxed in my arms as I nursed him just now and he breathed deeply... things you don't realize have changed until they return to normal.

And I am left wondering... was it being outdoors for so long during the worst of all allergy seasons on Sunday? Was it being around his allergens? Was it the kidney beans in my chili we ate for supper Sunday night? Was it the Costco chicken or the new tortilla chips we bought that also contain a disclaimer of "may contain..."? Am I eating too many tomatoes lately? Did something contaminate his baby food I made? Is he developing an allergy to the Corn Thins he soooo loves to eat?

What more could he possibly be allergic to? What more do I need to cut out of our lives? And I am TERRIFIED about this H1N1 flu and the potential devastating effects it could have on someone whose immunity is so compromised.

Surely God has made him strong to endure such things? Surely God's plan for him will include changing other people's lives because of his outlived suffering? Surely God would not have me lose my only son? And yet, all of these things have happened to others and these things WERE part of His plan, whether understood or not.

I don't want to be afraid anymore. And yet, if I am not afraid ENOUGH, will I jeopardize Ethan's life? Do we live in isolation until he is stronger? Or do we surrender to God's will and TRUST that LIVING life will mean an outcome that will bring glory to Him in the end?

These last few days have felt near impossible to put one foot in front of the other. Thriving plummets to sheer survival mode mentally and emotionally. Bless my father who came by this morning to watch the kids so I could just get out of the house for a little bit. He took one look at me and said "maybe you'd prefer to nap this morning?"

Thanks... I think. Either I look that bad or my dad knows me that well. Perhaps somewhere in the middle? (weak laugh)

So may you join with us in prayer as we praise God for the answers He has given us, for the healing He has granted Ethan in the past, for the strengths He has given Ethan to-date and for the privilege of loving him as our son. Join with us as we also pray that God bring more healing upon his brutally marked body, that he offer Ethan reprieve from his suffering and the promise of a long, healthy and fulfilling life. And that we give thanks for every moment we have with him even if they are exhausting. God bless you all out there. I love you so dearly for journeying this with me.

Saturday, 12 September 2009

Bragging rights

A few weeks ago, when I had posted about how tough things were going, I had my big girls here with us for our typical week on with them. I found that week particularly challenging as we were hosting a few things, I was living off of very little sleep and was feeling haunted by the suffering children of our world... there were a few doctor's appointments mixed in there, too.

I was down right pooped.

On this one day, I had to bring Ethan to the doctor's office which took a couple of hours, followed by a grocery shop with a hopefully contented little guy, only to get home and try to cook our meals in good time before Duane got back from his day shift at the firehall so he could eat quickly and head out into the fields.

Melina was babysitting Anika and Isabel for me.

The drive home was heavy as I thought about all the things I still needed to get done in the house and I how I would get them all accomlished between nursings, meals, diaper changes, Isabel's meds & tube feedings, etc...

When I got home, I walked in with my bags of groceries anticipating the horrific mess of a kitchen I had left earlier that day. But to my glorious surprise, the kitchen was spotless... all dishes cleaned and put away, counters wiped down, odds and ends put away... it was beautiful. I could literally feel the weight being lifted from my shoulders as I glanced around that sparkling kitchen.

There was Melina beaming with her beautiful smile and I felt so proud, so touched, so grateful to her. Feeling as tired as I was, this meant the world to me.

When I went to the den/living room to take Ethan out of his car seat, I gasped again as I looked around a cleaned den and living room! Are you serious? The toys were picked up and put away, no movies were scattered, clothes were put away, books were on the shelves... another beautiful sight!

What a gift! What a delight! What a daughter! What a helpful and loving human being! Truly I say to you, Melina's help has been an incredible gift to me this summer. I could not be more proud of her willing heart and her hard work. I love her so much and could not imagine my world without that smile, without her laugh, without her jokes... simply put, I could not imagine my world without her.

Melina, my darling girl, I love you so much! Thank you for being who you are!

The beauty of wuv, sweet wuv

Just had to share this precious little moment with Anika...

We were sitting at the supper table and she was just gleaming with her happy smile. I turned to her and said "Did you know that mommy and daddy love you soooooooo much?"

Her grin grew even bigger.

"And mommy and daddy love Ethan, and Isabel and Melina, too. AND mommy and daddy love each other! That's lots of love!"

And before I could turn back around and take another bite of my meal, Anika wisely leaned over to me and said "And we wuv you, too, mommy."

Me, butter... Anika, sun... MELTING!

Not only that, but ever since we had to bring Ethan to emergency that one night. Anytime we go to get her from her naps or bedtimes, she exclaims happily, "you came back!"

This morning, she woke up and came to me and said "Mommy, I came back!" I happily replied "You DID come back! Hooray! Where did you go?" And she replied "I came back to my famiwee." Too cute, I tell ya!

And lastly, she has been honing her negotiation skills lately. She has a slight obsession with "chocawat miwk" which is a minute amount of chocolate soy beverage topped up with rice beverage. Several times a day, she has to have it. The rule at supper time is that she only gets one cup so if she drinks it all at once, too bad. On this particular supper meal, she drank her whole cup before eating a single bite of her meal. She put the cup down and said "I NEED chocowat miwk, please." I replied "No, my dear. You already had your one cup and now it's all gone. No more chocolate milk."

She cocked her head to the side and said "Mommy, you want to say 'yes'."

Of course I burst out laughing and said, "No, Anika... I don't think so." And she smiled and said singing sweet voice "Yes, mommy, I think so." Once again, I shook my head and she made one final attempt "How about 'yes', mommy?"

Too smart! Two years old and she can just about negotiate her way out of anything she wants! There is nothing sweeter than our children's "wuv, sweet wuv". :)

Here's hoping you are all surrounded by precious "wuv" not only by those around you but also by our Father's gracious and abundant love for you now and always. God bless!

Y chromosome = Y ME?!!!

Would you like to know what my darling son decided to do the other day? Keep in mind that he is barely eleven months old and already the trouble he gets into is nothing short of unbelievable!

First of all, my darling Ethan does not like to sleep (as you already know). I suppose he figures he is missing out on too many things if he shuts his eyes. So nap times can range anywhere from thirty minutes to a glorious hour and a half MAYBE twice a day. I try to be consistent EVERY day with when I put him down for his naps hoping beyond all hope that he will actually RESPOND to routine... eventually!

On this particular day, I put him in his crib and shut the door. He contentedly chatted away in baby talk for ten minutes, then thirty, then forty-five minutes... finally an hour and half had passed of hearing Ethan's little happy voice over the baby monitor and the little stinker had NOT napped yet, although he was quite content. At this point, it was time to nurse him again so I finally went into his room and, to my horror, discovered what had kept him so content...

Ethan managed to pull out both tabs (at opposite ends, I might add) of the side of his crib which dropped it down to a point where he could almost climb out. But it does not end there... He also managed to rip off his diaper which happened to be loaded with little poop ammo! Oh yes, with every "Oh no..." I would say, I would discover something else which was followed by an even deeper "Oooh noooo..."

It now felt like an Easter egg hunt as I found pieces of poop tucked in places I did NOT know he could reach: between the mattress and the bars, behind his stuffed animal's ears, between the mattress and bars at the opposite end of the crib, on the floor... The true puzzling thing is that he NEVER and I mean NEVER poops as much as he did with this new found freedom.

So there he is gleeful and wearing nothing but his little plaid shirt (which he peed on as I "soaked" in the whole initial moment of "oh no." I took him out, put a diaper on him and proceeded to remove all bedding while collecting his personal Easter egg hunt of poop. Put some new sheets on the crib, got him dressed and sat down in the chair to nurse him stunned by the capacity my son has for chaos without being able to speak a word nor even walk yet. And the thoughts begin to travel to the days, oh dear Heavenly Father, the dreaded days of him WALKING... no, RUNNING!

And as I am nursing him, my darling son reaches up to my face lovingly, places his fingers in my mouth (as he usually likes to do which is typically followed by him trying to rip my teeth out). Just as I am about to allow my heart to melt at this little moment, my taste buds kick in to remember that I did NOT wash his hands...

Those precious, poop-smelling (and tasting) hands...

Dear Father almighty... Y ME??!!