quick epilogue

so many of you have asked how it all went.

here are the things we learned at National Jewish (some of which i have already mentioned, but this will the one-stop-for-all info.)

*samuel has an allergy to peas. i don't know exactly which peas. i know green pea but the docs want us to proceed only with great caution with all legumes (which is an outrageous prescription for us who love lentils, black beans and many others). we know there is an allergy to green peas, which he hates, yet had been slipping in on a daily basis with the butter (earth balance soy free) that we use(d), and often with our cheese (daiya). both are vegan/soy-free---so they are reaching for a protein...and use green pea. so, no more.

*he also has a sesame allergy, which also was slipping in with his occasional cracker (crunchmaster gluten and soy free sea salt crackers which we love(d). also, there are traces in his pretzels (ener-g wylde wheat and soy free pretzels) which he ADORES and we previously eating daily.

----even though the docs initially discouraged us from being able to find a food trigger to his eczema flares, i think we all now see that the green pea and sesame were bothering his skin. time will tell.


*we feel very competent to treat all stages of eczema. if any reader ever needs help of any kind re: eczema---call me. for almost four years i think i can honestly say that i knew most all there was to know. yet denver was helpful in watching the nurses do their thing with the steroids, wraps, etc.

*our suspicion of dustmites and humidity flaring his skin was affirmed just by docs' reasoning and samuel's testing.

*finally, we learned that he is just a very allergic little man---to foods and environmental allergies. his tests for peanut and soybean were (literally) off the charts, which is hard since his numbers have gotten so much worse since he was last tested at 7 months old. for example, his soy number was 2.2 and now >100. one hopes to see their child's numbers going down, not up.

now the rest is just my rambling for those still interested-------------------

only 20% of peanut allergic children are said to outgrow the allergy. i have always felt relatively okay (i know that sounds weird) with that. our world has grown aware of peanut allergy, and while it is a very serious and fatal allergy, it is more common which means easier to avoid and easier to deal with practically and socially.

as far as the others---soybean, egg, milk, wheat, and tree nuts (okay and green peas and sesame)...i just know that you put one foot in front of the other and live each day. my job is to feed him and love him, advocate for him when needed. i used to pray daily he would outgrow his allergies. i don't know if i have stopped praying so much bc my prayer life is usually pathetic, or, if i have grown weary or pessimistic in these four short years. neither reason feels good to me.

more than anything i want samuel to obviously...well, not die. i know that is a serious statement, but all parents of food allergic kids probably would name that first i suspect. after that, i want him to grow up knowing he is loved by me, david, and God. i want him to know he is special---not because he has allergies or because he is so cute :), but because he simply is...part of being created in a wonderful and fearful way. and, in his case he was created in such a way that his body misunderstands certain food proteins. i want him to be able to live as normally as possible. i want to teach him how to do sports, travel abroad, shop and cook for himself, etc...basically take care of himself while having severe allergies and eczema. these are things that he can learn and will have to learn, things i know i can teach him.

my heart was really pricked greatly by those teenagers there (see our "day one" post below). i know that the odds are in samuel's favor to struggle with anxiety, depression, low self-esteem, etc. due to his condition. i feel called to help him as much as possible (yet no more) to grow strong mentally. as a mama i long for him to be kind, sensitive to others and passionate towards good things. also, i long for him to have a very solid sense of himself, to know his value in Christ and to be confident and secure. seeing those older kids there was in one strange sense a great thing. because it is a reality, i feel thankful that i was able to witness it as a mama of a four year old. i am guessing such mental anguish caught their parents by surprise as it grew perhaps slowly through the years. Dear Lord, i pray to patiently, yet intentionally, shepherd both he and eli's little boy heart's that will grow and mature and one day be that of a man's. i pray God will use samuel's stuggles for good in both his life and the life of others.

so i have certainly gotten off track. the end of the denver updates. unless i finally get around to sharing what amazing hosts we had there with the bartley's.

Something Wonderful

...is in the works. My pessimism tells me I ought not share it...as nothing is official yet. Quiet, sober, doubtful---so as to be less dissapointed later on...

But, as a fervent lover of hope, despite being a nominal believer of it's existence, here it is:

In the near future Samuel and I might board a plane. I will likely look haggard; Samuel will likely look like he has leprosy (due to the absence of all steroids and antihistimines the four days prior). And, as if magically, we will be transported to a place where a team of amazing people will care about him and know him by name. They will also be brilliant doctors who have the potential to truly heal his little, exhausted body.

I could go on in this fashion for awhile, but sparing you the drama, we are waiting to find out when (and if) we will be scheduled to go to National Jewish Health in Denver.

David and I have put up our white flags...we are not able to help him. Lord knows we have tried. As has our pediatrician, allergist, and dermatologist. Nothing short of a happy dose of Prednisone will do the trick. Sadly, that is a med that can't be rubbed into his inflamed skin, nor taken more than once or twice a year.

If you saw him today, you might not notice. He had on long linen pants, socks under his Keens, shirt tucked in. But even me, while bathing him tonight, almost had to look away when I caught a glimpse of his backside. He was screaming/crying because he was both itchy and hurting. He was frustrated because I kept trying to distract his mind and hands from scratching while I started to put on his wet wraps.

So, for now we are done with restricting foods like white potato, tomato, and strawberries for weeks at a time hoping to find the culprit. I am now quietening all those voices in my head that say "aha, perhaps it is this damn front-load washing machine that harbors so much mold", or "oh, maybe those new vitamins were somehow cross-contaminated with one of his allergens in the factory and THAT is it!" Done. I can't do it. I would if it were possible, but I simply cannot heal him. I know that now.

The average stay is two weeks. He will specifically be treated for his eczema while searching for the trigger. Therefore, there will be lots and lots of work done in regard to his food allergies. I feel strongly that we are missing something. A grown allergy to something like sesame, corn, or oat? Perhaps I have underestimated his dust mite allergy, and rather than sleeping on a bed at night we ought buy a cute leather couch for his room. Anyway, like I said, I am trying to put the detective Mama away and just try to love him well with all that can be known today. Leaving the detective/doctor/Debbie-downer up to the Big Dogs in Denver.