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Sunday, 19 April 2009

Hoping it was just a bump in the road

Last Sunday, I noticed redness around Ethan's mouth and some skin irritation but figured it was just a mild set back. He was held by a lady who was wearing lots of perfume that evening and he really flared up that night. We chalked it up as a lesson learned meaning we'll need to request a no-perfume policy when people come over or when we go out visiting; however, the underlying redness seemed to get worse and worse over the next few days.

Top that up with the fact that I tried that soy-cream and his flare up just kept getting worse. Yesterday, he barely slept and you could see he was rather uncomfortable but this morning is his worst yet since his drastic improvements nearly two weeks ago.

His legs are bleeding from his little feet scraping up the backs of his legs relentlessly, nursing is becoming challenging again because he is contantly shifting around, his nose is stuffed up like crazy and his eyes are glassy & watery.

I had taken him outside with Anika on Tuesday and Wednesday when we had our beautiful weather and now I am wondering if that caused some serious hay fever for the poor little guy. He's never had the weeping eyes before or the stuffed nose. There's no cough but he is really having a rough go with his breathing at various points in the day.

What went wrong? He is still getting his wet wraps, we are using Cortef cortizone cream like it's body lotion (until we see the allergy specialist again on Wednesday), he gets his daily dose of hydroxizine (antihistamine) and protopic on his cheeks. Other than my one bump with the soy-cream, I have been on the hypoallergenic diet for almost two weeks.

What more are we supposed to do?????

Why do things work only for a short period of time and then he becomes IMMUNE to it? Not only that, but his eczema seems to come back with a vengeance!

He was looking like he was finally gaining weight again, he was actually hydrated enough to cry tears (the few times he did cry over this past happy week) and to drool. His hair was starting to grow back, too. It was so nice to rest my cheek against his soft head and to caress his cheeks for the first time in months. The week relief has done wonders for him BUT WHY WON'T IT LAST??? When will he stop suffering? Will this ever end? I am so tired of getting my hopes up and having them dashed away again and again and again. I am so frustrated from watching him in pain, screaming and writhing, trying to rip his skin off and all I can say to him is "I don't know how to help you, little buddy. I don't know what else to do."

This is so cruel on so many levels. What more does God want us to learn? And for crying out loud, would he quit using my son to teach me? And even as I type that, Melina in her wisdom said to me "but mom, maybe God knows you well enough to know that the best way you would listen to Him is through your kids."

Ok, ok! I'm listening! What do you want? Why Ethan? How does his suffering bring glory to You?

Do we pack up and live in a cave somewhere? I'm scared to GO anywhere because I have no idea if Ethan will have an allergic reaction to his environment or something else I haven't thought of. I'm scared of people touching him or holding him (perfume, laundry detergent, synthetic fibers...). I feel like I am going crazy. Will this pass, too? Or am I going to become the crazy lady who sprays antibacterial air freshner on people who want to hold my son and who carries hand sanitizer in her purse & pockets at all times?

Anyways, I just needed to vent. My brain hurts again in trying to piece this enigma together and from trying to talk myself into trusting the PURPOSE to all of this. I just want to know he'll be okay in the end. And sooner than later because I can't figure out how to piece my life together to something that RESEMBLES order and structure. Will post pics as soon as I get the chance. Sorry for the Eeyore gloomy entry, but I feel so down right now.


Anonymous said...

My dear daughter,

I so look forward to reading your updates but am sorry to hear Ethan is not continuing to improve. I still urge you to take him to emergency at Children's Hospital if it gets too unbearable. Vent away, Rita. We're listening, we're praying and we're loving you.


Anonymous said...

Dear Rita,

How utterly exasperating Ethan's condition is. It's unbelievable... An answer or answers must be close. Keep up your tremendously loving work Rita.

Bon courage.