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Wednesday, 18 March 2009

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...

2 comments:

Jane S said...

You've probably already tried this. But my nephew had really bad ecxema and when my SIL call the specialist they said to try giving up dairy & sugar. For him it was a swich to soy milk that helped. Perhaps eliminating sugar would work (though I'm sure you already do that). Just thought I'd mention it.

Cindy said...

I am very sorry that you are going through this. I hope they find the answer soon.

One time in church when I heard a priest talking he said a pretty cool prayer. He was speaking about that when people are so stressed out they don't even know what to say to God anymore. Been there, done that!

The prayer is "Merciful Jesus, son of the only living God, have mercy on me, a sinner!"
You've probably heard it before. However it has helped me. Jesus and his angels are with you and your family! I will pray for you too!
Your cousin,