healing path

April 5, 2014

our sweet little guy turned 3 this week. the aching love i feel for him is hard to put in words – he is *that* special. in so many ways, older than his three years … astute, hilarious, energetic, tender.

and his struggle with eczema has never been worse.

there is a black cloud of sorts – the only way i can really describe it – that hangs over me, over us … as his body is gripped with unyielding discomfort, consuming itching. i am SO DESPERATE for his healing.

things have shifted in to high gear the past couple months: i have done more research, more trying of new products, more dietary adjustments … and the end result: his skin is worsening.

last fall, we got him in to see a local allergy, asthma and dermatology MD and his recommendation was a long-term (no end in sight and certainly no “cure”) plan including the regular use of steroid creams. his opinion was that diet was negligible; he offered some great insight about immune system action and the way his body was manifesting a reaction to something – but no clear understanding of causes or cures. just symptom management. and because we were – again – desperate, we implemented his recommendations. josiah’s skin did improve but i also began seeing this intensity in his behavior (steroids?!) and he became *severely* constipated. direct causal relationship from the ointments? impossible to prove but after a few weeks, we tapered off.

another serendipitous happening this fall was my husband’s conversation with a local pharmacist. my hubby was at a local chain store, trying to decide which anti-itch ointment to try this time and decided to approach the pharmacist. they ended up having an amazing conversation that was followed by an email exchange in which the pharmacist (a fit, 30-something handsome guy) recommended a number of things that we are familiar with and in fact recommended a specific book that i had *just come across in my research the previous week and had ordered (“the eczema cure”).  a lot of confirmation about the path that we are on and validation that the path is not an easy one, for sure.

i want to share a portion of one of his emails as it is pretty incredible – heartening, honestly, to hear the words of someone deeply embedded within our medical industry: ” I am one of the few in my line of work who believes we are providing the farthest thing from healthcare to our population as a whole.  We have a system designed to keep people dependent and sick, and at no point
along the way do we seek to make them healthy or show them how to be healthy. And frankly, most people aren’t intersted.  They are far too ingrained in the system that feeds them a diet the makes them sick, then more sick, and a healthcare system that maintains their existence so they will forever be dependent, but never healthy.”

to say that his words resonate to my core – and my hubby’s – would be a deep understatement.

so fast forward to january,and our family does another Whole30. as always, i am hoping the changes in our diet lead to healing for our boy. i eliminated even more suspected triggers: tomatoes, coconut. still, no improvement.

i took josiah to see a local naturopath in january, and she was a  lovely woman. she was conscientious and covered a lot of ground, giving recommendations that included some topical ideas, a homeopathic, some vitamins and supplements.

nothing helped.

last month, deep in the throes of research, i sent an email to a local listserv and received over 50 heartfelt, insightful responses. so many ideas, healing suggestions, things that have worked for someone else’s eczema.

there is JUST SO MUCH. SO many ideas. so much information. and i have honestly tried so many things. in the past month we have easily spent $50 on the very best creams, each one feeling ok but none making a change. we are back to using some of the high intensity ointments because we are desperate for him to have relief.

what this looks like for our family in real time is that most every night, for several hours (typically 1-5am) he is awake and *miserable, consumed with itching. hubby and i take turns soothing, rubbing, trying the latest topical option, and have found our best tool is distraction. so he often will be curled on the couch, laying on a soft cool cotton sheet, with his beloved blanket and paci, and “ice pack” (plastic bag filled with crushed ice) and watching an episode of “Dora”. this seems the only thing to take his mind away from his skin and allow him to settle.

clearly, this is an untenable way to live. we are miserable and mostly just so SO desperate for our boy to be well.

we have a couple of next steps: i’ve had phone consults with two other local providers (a chiropractor/naturopath that has experience with eczema and begins with a round of thorough diagnostic blood work; and an accupuncturist that also performs NAET – google it!). we have an appointment with one of them this week.

as i’ve held josiah this week, praying over him, crying out for healing, i have been reminded of the meaning of his name:

GOD HEALS.

i am claiming that healing for our boy and am believing for complete restoration of his body to strong health. i pray that our journey becomes something that allows us to share and encourage others on their healing path.

 

{i forgot to do a post for 13 months – oops!}

what a wild, wonderful time this is … with our growing, busy, precious boy! some highlights:

:: people had told me about how “busy” and “active” he would be but really, nothing prepares you! LOL. he just never stops. exploring. moving, opening. closing. climbing. going. going. going. 🙂

:: he took his first steps on his first birthday, then spent a few weeks taking a few steps here and there but still primarily crawling. he is a complete walker now, and can pretty much run. crawling days are long gone.

:: he is in this darling repeating stage! he is talking SO much. and he just learned how to say “maddie”, although it sounds like “nattie”. SO precious. makes his sister so happy! he can say mama (sounds like “naanaa”), daddy, doggy, “lolly” (another push toy), ewww, and then birdie and buzzy (which sound like “duudee” but are slightly different and it’s clear to us what he’s talking about. lol).  just this week, he repeated verbatim: “date”, “meat”, “owl.”

 

:: his all-time favorite toy is still definitely “buzzy”! best $5.99 ever spent at the kids’ resale shop.

streaking with buzzy!! 🙂

:: speaking of “toys”, he totally prefers non-toy items. and the top of his list? daddy’s printer. they have a little game that used to be funny but now is pretty much insanity-creating (!): josiah walks to the printer (which sits right by hub’s desk), looks at daddy and waits til he is seen, then lunges for the printer. *always*. if anyone is working at the computer, josiah stops and drops everything to come immediately to start messing with the printer. ahh.

:: we got him his first “real” pair of shoes last week and they are so darling! totally official little boys’ tennis shoes. within a day, we could say, “go get your shoes, josiah” and he would walk to his shoes, pick them up and bring them to us.

:: speaking of shoes, he is *obsessed* with “outside”. say the word and he runs to the door!  he loves being out back, pushing and playing. and he LOVES LOVES going on walks.

:: daddy takes him on walks most days in the stroller, and they both love it! josiah is just SO happy outside … observing, talking, looking. hubs makes sure to bring his sippy cup (darling man fills it with ice water), cheerios and they are set to jet.

 

 

:: for the first time ever, my sleep update is going to be HAPPY!! happy happy joy joy! the light at the end of the tunnel has started to break through. six of the past seven days, he has woken only ONCE at night … rocking easily back to sleep w/paci and blanket … and slept in his crib til about 6am. this is so RADICALLY improved from how it’s been. last night, he was asleep at 8pm ( a bit later than normal), didn’t wake til 2am (6 straight hours! woohoo), cried and rocked easily back to sleep, and woke again around 5:30am. i brought him to our bed then, which is *totally* fine with me. and the other wild improvement: NO nursing at night! again, a major first. i’ve known that the nighttime nursing has been a huge sleep crutch that’s likely been perpetuating the waking issues. so, done. in fact, he didn’t even nurse *before* bed last night – another first. he does nurse when he wakes early morning and comes to cuddle. and he’ll usually nurse maybe one or 2 other times during the day but definitely more for comfort and cuddles, not nourishment.

{my goal is to wean pretty much totally by june, so i’ll have a couple months before baby green bean arrives!}

:: so in the not-so-wonderful category: our boy has started *screaming*. as in, ear piercing screeching screams when he is mad, removed from playing with something he wants, being put in the car seat, having a door closed (ie, can’t go outside), etc. it’s totally and completely unacceptable and untenable for us! he started, almost like experimenting with his voice somewhat “innocently” a few weeks ago. but it’s transformed in to willful behavior so we’ve had to implement a discipline plan, because our kid ain’t doing this! ha. (and i know the subject of physical discipline makes many uncomfortable so i want to be upfront and say that we *do* believe in physical discipline when needed). he now gets flicked on his knuckles whenever he lets out a scream. the hardest part is being totally consistent and doing it *at that second* so the lesson isn’t lost. i HOPE he learns this one quick because it’s painful … the screams and the discipline. 😦

this post is getting super long so let me wrap this up!

:: for several days, he took just one mid-day nap and i wondered if he was transitioning to that. but in the past week, with his improved nightly sleeping, he’s been waking much earlier (up for the day no later than 6:30am) and is *definitely* ready for a morning nap between 8-9am. he sleeps about an hour … wakes and has a snack then lunch … and is ready for another nap mid-afternoon (1-2pm) for another hour-ish. bedtime is around 7pm, but can vary a bit in either direction, depending on the day. he loves his bath in the big tub every night before bed. and he has HUGE preferences about his reading material! haa. we just got “moo baa la la la” and he will say “laa laa laa” referencing that book. so cute. OH! another new word: “nee” and it took a while but i finally figured out he was talking about the horse that says “neigh” in that book! and he just lit up when i found the page and he kept saying “nee nee nee!!”.

really, there’s so much more. he is just DELIGHTFUL, amazing, a cuddle bug love and the total joy of our lives! it’s so hard to imagine that another precious boy will be joining our family in a few short months!!!

playing ball with daddy in the backyard!