And she was gone...

Well, this morning my mother packed her bags and prepared to leave. It felt like a scene from Mary Poppins although instead of "a spoon full of sugar" to help the medicine go down, I would say "just a spoon full of agave nectar helps the colloidal silica go down". Hee hee hee!

It was sad to see her go but she was beginning to look like she could use a break herself by the end of her five day stay! Rest up, mom... you deserve it!

Well, your prayers are rather amazing! Day four was really rough for our little man but would you believe that yesterday was an awesome day? We took him for (ooo, just have to interrupt here because there is a big fat bluejay perched just outside my window... hello bird!) ok, back to what I was saying: We took him for a chiropractic adjustment in the morning and he was in good spirits the rest of the day! Last night, he nursed every two hours but went right back to sleep. No screaming, no writhing just my beautiful son snuggled in his blanket and nursing to his heart's content.

And not only did your prayers of comfort reach Ethan, a friend suggested the Avent trainer sippy cups as an alternative to a bottle and he actually gave it a few sucks! I know, a few sucks isn't taking a whole bottle, but this is HUGE progress! Ah, my optimism is tickling my heart once again... can you tell I have gotten some rest?

When I spoke with a La Leche League leader, she suggested that Ethan might be getting too much foremilk and not enough hindmilk (for those of you who do not speak breastfeeding language, foremilk is the thin milk that comes out within the first few minutes of nursing and the hindmilk is the rich, thick milk that comes later). So I have been having 30-40 minute nursing sessions instead of 15-20 minutes. He seems much more content. Woo hoo!! Happy Ethan means happy mama which means happy household!

I cannot begin to tell you how blessed I feel to have such support from all of you. The emails, the offers to help, some of you have even fasted in prayer for Ethan... I am telling you, it is truly HUMBLING! It is these moments that I understand how we could be made in God's image. The unspoken unity is felt through your prayers and my soul rejoices at the unseen ways we have connected.

I think of God smiling and saying "it is good."

We see the allergy specialist again tomorrow morning. Hopefully we can get another weigh in and some results on allergens. Will keep you posted...

On a different note, Duane's mother has been in the hospital these last few days due to cardiac health issues. She would probably kill me with her "if looks could kill" eyes if she knew I was doing this (but I am trusting that she will forgive me) but would you kindly keep her in your prayers, too? If a person could live on will-power alone, that would be mum! She has been faithfully at Duane's dad's side since his stroke over a year ago... a loving dedication that could put anyone to shame. I can only imagine her pain in being away from him this long, unable to help him, unable to be supported by him during this scary time. She is richly loved and I only wish we could do more.

And my beloved husband continues to plug away despite so many things falling a part around him. His strength is honorable, his love is so faithful and his commitment to family is beautiful. He loves them all so much and I can only imagine the burden of an only son who takes on the weight of the world in hopes of helping those whom he loves... even if he does like to do it with a sledge hammer at times!

So here is my prayer for all of you: that you be filled with the holy spirit, that you be filled with peace in the face of your own challenges. May you know that when you suffer silently, it is never unnoticed by our Father whose love I pray surrounds you always and in all things. Be still and bask in His glory. In Jesus' precious name... Amen.

Anika in good spirits

My mom's presence here these last few days has been such a God-send. I can hardly believe His incredible timing. She is helping to potty train Anika, today, she cooked all my special restrictive meals (such a nice break) and just knowing her set of hands are readily available helps me to relax. Thank you, mom!


I miss my children. Anika in particular has hardly been with me lately. But as you can see from these pictures, we make the most of our little moments together and laugh as much as possible. Thank God for those moments, those "gifts"... grateful reminders that "all is good."

The four day curse

Well, I probably shouldn't be surprised. After all, any time we have found a lotion or treatment that works on Ethan, guaranteed by the fourth day, it ceases to work and we watch as his agony increases again, his feedings become intolerable and his sleep that much more deprived.

I noticed it after last night's wet wrap... normally he is relaxed and peaceful in his wet wrap and he sleeps for about two hours before we need to get him back into dry clothes. But last night, he was restless even right after being put in the wet wrap, he was difficult to settle and only slept for about forty-five minutes.

Uh oh... please dear God, not again.

Sure enough, we had a not-so-fun night (he continues to nurse every two hours around the clock). This morning, he fought his wet wrap completely and writhed for the two hours we kept him in it. He wouldn't nurse properly and has barely slept at all today. His cheeks are looking bright red again and starting to ooze.

Why won't anything last for longer than three to four days????

We will continue with the wet wraps until we see the Allergy Specialist again on Wednesday. He continues to fight the bottle and we haven't been able to give him anything other than my milk and with some luck, a bit of water through an eye dropper.

I am so tired. I feel so deflated... as though I am fighting a battle that cannot be won. This is my Goliath and I just can't seem to find my foundation in God strong enough to defeat this.

Or maybe it is not meant to be defeated...

I do not know. And I ask myself, what am I willing to surrender? Why is this happening to my son? How long will it last? Will it ever end? Will I ever sleep again?

I find my mind dangerously close to shutting down, melting down, closing off, shutting out... escaping. I just want more than an hour or two of sleep. I just want to remember what it's like to care about more than getting people fed, diapered, consoled, etc...

I know, I know. I am starting to sound like one big pity party. The sheer irony of it is that I could find the optimistic side to this if I could just get some sleep. I know I could. If I was rested, the old me would laugh at the face of this challenge and say "oh silly challenge, nothing can defeat me and my faith. Come, let me tolerate you for a little while and you will see."

Instead, I feel like I'm on the verge of a nervous break down and my faith keeps knocking at the door saying "hey, remember me?" I don't want to remember you right now because you are giving me nothing but false hope! And even at that statement, I know it is untrue... just one of those childish moments where you think it feels good to yell "I hate you!" to the friend you love who just hurt your feelings.

Surely this is just an ant hill. After all, I could be starving in Africa, walking for miles without any guarantee of finding water or knowing if I will return to my children still alive or not. It could be SOOO much worse!

But this is my cross to bear right now and I just need to say that it hurts. That I'm scared. That I feel discouraged and helpless when I watch my son writhing in pain. I am scared to eat ANYTHING for fear it is the culprit. I am going on almost three weeks with this strict diet and my only hope lies in the advice I heard that all traces of milk take three weeks to clear a person's system. So if this is dairy related, maybe... just maybe... next week we will finally start to see some changes in Ethan's skin.

I am watching my husband run himself ragged trying to be present in the night, working his days, trying to prepare the farm for spring and being present to his own family, too.

I just want my son to be healed. Thanks again for your prayers.

Been hacked...

So MTS just called to let me know that someone in Europe hacked into our email accounts and was using it for spam. Honestly people, is there not more to your life than dedicating your attention to damage & destruction? I don't know whether to track these people down and punch 'em in the face (I know, good ol christian approach, eh?) or pray for them. Ok, ok... so I'm mad right now and THINK that I would want to punch them in the face, but really if I were face to face with them, I would probably think about their kids' pictures on their desk or tucking them in at night or the fact that they are SOMEONE's kid and that makes them lovable to someone, right? Arg... so maybe I would just want to ask them "why?" What did you or humanity gain from this?

MTS has reset the accounts and hopefully none of you on my mailing list will get anything strange. Honestly, LIFE, can you just let me deal with my son for now and other crap later?

Hope you are all free from email-hacking predators (makes them sound like they've got sharp teeth or something) and strange emails.

Hittin' the bottle!

My mother is here now and has spent the last hour trying to get Ethan to take a bottle... to no avail. He is one stubborn little guy! He's had two sessions of wet wraps and he's finally wetting his diapers again!! His skin looks hydrated when we finally unwrap him and he isn't attacking his head with his mitted hands anymore. Keep praying that he'll learn to take a bottle. We need him on this elemental formula for just one week to rule out the possibility of a food allergy. We also need his skin cleared enough to finally do some allergy testing. Thanks a bunch!

Wrapping things up

Well, through blizzard storms & icy roads, we managed to get Ethan to his appointment with the allergy specialist this morning. Unfortunately, his skin was too severely erupted with eczema to do any skin allergy testing. In order to get his skin under control and relieved enough to do some proper testing, we are doing WET WRAPS... yep, you guessed it... we simply wrap him up in wetness.

Ok, so I'll elaborate a little more: we give him a bath (no soaps, just a good soak) and within three minutes of getting out of the bath, we lather him & grease him up like a little piggy in Vaseline Creamy Intensive Care Therapy lotion, immediately get him dressed in WET clothing (yes, I know, I shuddered at the notion, too) and then cover him up with DRY clothing. You can read a summary of the therapy at http://www.skincarephysicians.com/eczemanet/wet_wraps.html.

Apparently we only need to do this for a week or two with impressive lasting results. I am excited at the possibility of finally alleviating his pain! I have to admit, he looks pretty cute all mummified. He reminds me of those specialty pears you buy from the store that come individually wrapped. hee hee hee!

The doctor also wanted to put Ethan on an elemental formula free of dairy and other possible allergens for two weeks. This is where we will need more prayers because he has FOUGHT us tooth and nail on taking a bottle. I just bought some adiri bottles (they won a medical design excellence award in 2008) because it best mimics an actual breast. I can't help but giggle when I'm holding this thing... and blush! We could use a good laugh these days so it is welcomed.

I have the wonderful joy of pumping for the next two weeks. Oh joy, oh joy... there is nothing like feeling as though I belong in a barn with the other milking cows! Always a lesson in humility around the corner for me (sigh).

And would you believe the timing? My mother has managed to get a week off work to come and stay with us. We agreed to it this morning before we even discovered what this next week would entail: two wet wraps per day, attempt at getting Ethan to take a bottle, pumping, sterilizing and making formula.

So that's our two week tackle for now. We welcome your prayers for Ethan and thank you for the invaluable support you offer us in the ways you are present and for caring enough to stay informed via this blog. I love you for caring!

We'll keep you posted... literally!

Ethan's eczema treatment summaries

Hello dear ones! Thank you for the wonderful emails of prayers, suggestions and overall support.

I realized in my last post, I hadn't itemized all of our trials to-date... Here are some things we've attempted:

Conventional:
hydrocortizone creams (cortef & dermatop)
antibacterial creams (fucidin)
daily baths
100% cotton clothing
humidifier

Lotions:
Aveeno Eczema skin care
Shea butter
Mayan Magic
Vitamin E
Avocodo (NOT a good idea for an allergy-prone child!)
Organic Aloe Vera
Extra Virgin Organic Olive oil
Organic extra virgin coconut oil
Watkins red clover salve

Unconventional:
chiropractic adjustments
osteopathic therapy
naturopathic IGG blood test for me (delayed food reaction) & resulting gluten, egg, dairy & yeast-free diet
homeopathic meds (Silica is working great so far! Keep your fingers crossed!)
Removal of all CFL lights (actually made a difference for me, too!)
Removal of all wireless technology
Water testing (still waiting for results)
No detergents, soaps or dryer sheets

Shoot, Ethan has woken up and is crying... will be back as soon as I can!

Ok... I'm back! Some other observations have been:
- He has heart shaped bumps on the top of his head (is this a normal skull shape?)
- He's always had these strange swollen glands behind his ears
- He's never really been able to sweat
- He has difficulty twisting his torso towards the left (osteopath figures it's a liver issue)
- I've never seen tears when he cries
- He had major digestive issues as a newborn, in fact, his gas pains were so severe, they would push his lower vertabrae out PLUS it caused him to have a herniated belly-button. These have since been resolved. But could this mean Gastrointestinal issues?
- He used to pee like crazy and these last couple of weeks, he barely pees... is there a kidney issue and toxins are therefore oozing out of the skin?
- He's had a poor latch since birth
- I had wonky skin during my pregnancy with him. In fact, I called it "my wonky skin pregnancy"... could this be a DNA thing?
- He was very red in skin pigmentation from birth (I just figured he had high iron & making lots of red blood cells). Could we have missed potentially dangerous levels of bilirubin?
- With cytomegalo virus having been the cause for Isabel's premature birth, could it have resurged during this pregnancy & affected Ethan?

Oh me oh my... my brain keeps going and going and going!

And yet a friend offered me such comfort as she reminded me of the apostles out in the dangerous storm in a boat. They were so panicked despite Jesus being among them. How silly to panic over the very elements that abide in Him!

And here I am in my storm... panicked for my son. Have I not even the faith of a mustard seed?? If I stopped trying to GET the answer, would I finally allow God to PROVIDE the answer? If I stopped trying to be in control of the outcome, would I finally give God the chance to PROVIDE the outcome? Am I willing to TRUST His plan for Ethan and TRUST that guidance will be provided and answers found?

And when I finally find solace or rest, I am bombarded with dreams of end times! That is NOT restful at all! Be STILL... be PATIENT... be WISE and TRUSTING. I know all of these things in my mind yet I do not KNOW them in my heart.

I just want peace, healing and rest for my son... I could not imagine loving this world so much that I would watch my son suffer for the sake of others. His love is so tremendously humbling. I seek comfort in knowing that I, too, am His child and just as I ache in watching my darling son, so does He ache in watching me.

I am left with this: God, grant me the SERENITY to accept the things I cannot change, COURAGE to change the things I can, and WISDOM to know the difference.

God bless you all and thank you for journeying with me! You are my angels!

Ethan update - prayers needed!

This will have to be quick as Ethan has finally stopped screaming and will likely give me only another 45 minutes of reprieve before he is up again screaming...

How are things? I am EXHAUSTED and OVERWHELMED! Since Ethan was about five weeks old, he started to get craddle cap. Eventually it moved its way down his body until he was covered from head to toe with his head, cheeks and creases being most severely affected. He seemed unable to sweat but would ooze this sticky honey-like substance. We started keeping him in 100% cotton clothing, not using any detergent or dryer sheets, no soaps or scented lotions, etc... Nothing seemed to be working.

Long story short, he has lost a pound over this past month and appears to be regressing. He gets these strange little body tremors. He arches his back like a newborn when you pick him up. He sticks his nose in the air now again the way Isabel would do when she was aspirating her saliva. He absolutely won't take a bottle, even if he's starving. We've seen chiropractor, osteopath, naturopath, pediatrician, next week we see an allergy specialist and we'll likely be driving down to Montana in the next few weeks to meet another specialist.

I am TERRIFIED as I watch my son suffer in his agony and obvious discomfort. And what can I do to help him???

We have gone gluten-free, dairy-free, egg-free and yeast-free in desperate hopes of avoiding whatever allergen(s) seem to be distressing his immune system.

I can't help but ask God "why are you doing this to me AGAIN? Have I not put in my time with Isabel? Why must it be my children who suffer? WHY???"

And I know the last time I yelled at Him regarding this question (when Isabel was fighting for her life in NICU) and He clearly answered me "Because I LOVE you that much." But I am not feeling that love right now. I feel scared and mentally exhausted. If you knew the countless angles and possibitlies I have fathomed, oh you would be mentally exhausted right there with me!

I will post some pics as soon as I can get another break. But my life is in "survival mode" right now. I apologize to my loved ones for not being able to visit, have company over, get out, return phone calls & emails... every moment is spent trying to keep my family fed with this new diet restriction while tending to a non-stop-screaming baby who has gone from nursing every four hours to every two hours while tending to a 2 year old and a 9 year old disabled child and a teenager! How the heck did they do it in the old days??? I feel like I'm taking crazy pills over here! The house is in total disorder and my couch has become a mound of unfolded laundry (hey, at least I managed to get it cleaned! - pathetic laugh) and poor Anika can barely see because I haven't had the chance to trim her bangs.

So before I keep going on and on and on as I tend to do, I am going to get my first bout of 20 minute nap in anticipation of yet another sleepless night (going on over five months now). Thank God almighty for Duane's incredible support, loving understanding and presence. I would be absolutely lost without him.

Please pray for our Ethan... I fear neurological issues and I am scared to death of what this will mean... yet again. I pray I am wrong. Forgive me as I try to stay afloat in my own little world over here. Hopefully it won't be long before LIFE can resume again and I can be a part of this world once more.

Ah shoot... missed my chance to nap... there goes Ethan screaming again...