Monday, late afternoon, I stood outside in the Portland not-quite-rain and mist. I stood amongst purple and white flowers, their heads nodding downwards, some of their green foliage invariably crushed underfoot. I faced the digital telephone box, weapons of choice in hand: needle-nosed pliers in the right, Phillips head screwdriver in the left. Adahlia stood behind me, on the gravel path, fingering a small stone she’d picked up. There was a bolt that needed removed, and a screw, and then some latching mechanism, and then maybe I could find a way to unhook the thick cable that came out, wound around our yard, and attached itself to a complicated coil of wires in a utility box that seemed more like an open snake pit.

We don’t have digital phone. Never did. But this wire was placed by Frontier months ago, over a year ago, until a few days into their internet service I realized I’d made an error. We switched to Comcast for internet and Frontier’s wire was never buried or removed. I had other fish to fry. But now we are moving, and something needs done about the wire.

I’d been on the phone all day between the two companies. Frontier refused to remove or bury it because they weren’t my provider. Comcast refused to touch it because it wasn’t their equipment. They finally suggested I just remove it myself, if I could do it without electrocuting myself. After taking a look at the wires balled up in the box in the ground, and realizing I could not detach our wire from the rest of the tangle, I figured I’d approach the problem from the opposite end, and try to disconnect the cable from the box attached to our house.

But it was locked.

I partially unwound the screw, but it mysteriously stopped turning and then I couldn’t remove it. Using the pliers, I twisted and removed the bolt. I tugged at the door. Nothing budged. I tugged again. Nada. And that was it.

Yup, that was it. I pulled out my phone and called Frontier. Andres, located in their Texas office, picked up.

“I am standing in the rain with my 18 month old daughter and scissors in my hand,” I seethed. “I have called you and comcast both, and gotten nothing but the run-around. I’ve had it. Your company put this digital phone cable in my yard. In 30 seconds, I am going to cut the wire, unless you do something about it.”

“Yes, ma’am,” he said, “let me order you a technician.”

So Adahlia and I went back inside and I pondered my second big problem of the day: how to get Adahlia’s pediatrician to agree to prick her finger to test her hemoglobin (Hb).

You see, the hospital cannot do finger pricks – they only have phlebotomists who draw blood from veins. This is not only more painful, it also increases the risk of making her veins no longer good (after awhile, veins give out and you can’t draw from them anymore), which increases the risk of needing a port to give her the transfusions.

For obvious reasons, I do not want an IV port placed in my daughters chest unless we absolutely must.

Adahlia was 3 weeks out from her last transfusion. She had only gone 3 weeks between transfusions for the last 2 iterations. I needed to get her blood checked but I didn’t want to waste a poke if we didn’t need a transfusion. I called her ped’s office, but after discussing my request with the doctor, the nurse called me back to say we’d need to make a full appointment, because the doctor wanted to do a check of her: he was concerned and wanted to rule out sepsis.

I groaned.

“She doesn’t have sepsis,” I replied. “She’s not sick. We just need to know her Hb levels so we can know if she needs a transfusion. In and out. We don’t even need to see the doctor; we don’t see anybody but the phlebotomists when we go to the hospital for a Hb check.”

The nurse said she’d talk to him again.

Then she called back to say the doctor was declining our request, saying that he didn’t want to get involved.

I nearly snapped. Didn’t want to get involved? Believe me, lady, there are times I’d rather not be involved, but I am! We’re involved! Too bad!

I didn’t snap though. Because I didn’t really believe it. This was Adahlia’s pediatrician after all.

“Are you sure? This will save her so much pain… A finger prick she doesn’t even feel… And it’s so quick… ”

Silence. Then, in a low voice, the nurse apologized, and repeated that he didn’t want to get involved. “I’m really sorry,” she said, “I really am.”

At that point, my eyes began to water. How could people be so cruel? And I nearly fired our pediatrician.

But we were already having all sorts of difficulties with Adahlia’s new health care. With the new health law taking effect on the 1st of the year, Adahlia’s Medicaid provider switched, and so all her appointments and medication now needed new authorizations. Id been going back and forth with her hospital and insurance and pharmaceutical companies for days, trying to iron everything out. To switch out her pediatrician now would be disastrous.

Ok, I thought. What is the equivalent of threatening to cut the line when it comes to a doctor?

If compassion and reason wouldn’t work, what approach would? I was obviously using the wrong one.

(How many times in the last 18 months have I discovered that compassion and reason will not work with many people? Too many.)

Then, I remembered how the hematology nurses had approved this plan of mine, and given me their fax number so that the results of the finger prick could be faxed to the hospital.

It was after hours , but I called and left this message at the pediatrician’s office:

“Hi, this is Adahlia’s mom again. I just needed to call one more time and see if Dr ___ would reconsider. I believe I forgot to mention this, but the hospital is actually in favor of this plan, they’ve approved it because it will save her both pain and trauma to her often-poked veins.”

Pause.

“We’d really like to keep Dr ___ ‘on the team,’ so please call me back as soon as possible. Thank you.”

Eureka. The next morning, the nurse called back, congratulating me on my persistence and saying we could set up a finger prick that very day, provided they received a fax from the hospital with instructions.

In a snap, I arranged this with the hematology nurses. After all, the instructions were not rocket science: prick finger when requested, possibly every 2-3 weeks. Test Hb levels. If 8.0 or below, refer to hospital for transfusion.

Done.

And you want to know the best part? Of course you do.

Adahlia didn’t blink at the finger prick. Didn’t appear to feel a thing. And her Hb was 8.7. Which meant no transfusion necessary, which that we really did save her from unnecessary pain, and her veins from one unnecessary puncture.

Chalk up one more victory for mama bear!

Lesson learned? Well, that’s a complicated one, because in today’s modern age, there’s a lot of people talking about doing stuff, and very little ever actually getting done.

For example, the digital phone cable is still lying unburied on my yard.

Adahlia is nearly out of exjade, the medication that removes the excess iron from her blood, and the new pharmacy we have to go through still hasn’t called me to set up delivery of it, even though the hematology nurses and I have been on the phone with our new insurance company and this pharm company for over a week, as I’ve been desperately trying to arrange a refill before she runs out.

Which she will. This weekend.

Sigh.

So, my dears, a question: what’s the equivalent of cutting the wire, when it comes to a pharmaceutical company?

Just a quick note to acknowledge my dear angel friend in DCUs (That’s Desert Camouflage Uniform for you folks of non-military lineage):

She just donated $250.  It is enough to pay for Adahlia’s upcoming consultation in February with her chinese herbal doctor, and all her herbal medicine (including, possibly, the homeopathic spagyrics, too!)  With our big move coming up, and our credit maxed out, I was wondering what we’d do.  I certainly didn’t want to have to cancel the appointment.   I could have never imagined I’d be in the place where I couldn’t afford the medicine I believe in for my own daughter.  Where I’d have to weigh a decision to halt the medicinal plan that I believe will eventually cure her.  How far will I go to not let that happen?  What will I give up to give her every possible chance for a cure?  Plenty.   What will I do?  Anything.  Everything.

And then, out of the blue, this incredible gift!!

When I expressed my astonished gratitude to this friend of mine, she said that we had just popped into her head, and that she “must have heard us somehow.”

I believe it!

Thank you, thank you, thank you!

You see, all things work as they should.  We must just continue to do all we can, and to trust and have faith.  Or, as its been said:

“Be helpless, dumbfounded, unable to say yes or no.  Then a stretcher will come from Grace to gather us up.  We are too dull-eyed to see that beauty.  If we say we can, we’re lying.  If we say “no,” we don’t see it.  That “no” will behead us and shut tight our window into Spirit.  So let us rather not be sure of anything, beside ourselves, and only that, so that miraculous beings come running to help.  Crazed, lying in a zero circle, mute, we shall be saying finally, with tremendous eloquence:  Lead us.  When we have totally surrendered to that beauty, we shall be a mighty kindness.”  ~ Rumi

Blessings to all.

Adahlia was blessed once by an eagle when she was in utero.  A bald eagle.

We were at the Portland Saturday Market to buy Christmas presents for our families, and I was just shy of 8 weeks.  We had just moved into a beautiful house together after carefully considering both our incomes and our post-partum plan.  We were about to spend a lot of money on gifts and shipping fees, and we weren’t concerned.  It wasn’t because we were very well-off (I was in my fourth year of graduate school, after all), but because we were full of love and possibility and our future unfolding.  Joe had run back to the car to get something, and I told him to meet me at the river.  I have always been drawn to water.

We were at the market fairly early, and it was not yet crowded.  There are several large trees near the river, near the fountain and food vendors, and folks were pointing at the closest one.  A bald eagle sat near the top, calmly surveying the people gasping and the seagulls screeching at it.  I smiled and felt my heart expand with wonder and joy.  I felt so grateful to live in this amazing city, where miracles like this could happen on a crisp, December Saturday.

Suddenly, the eagle lifted off from the tree.  He did not immediately climb into the sky.  He flew towards me and stopped directly in front of and above me, perhaps only 10 feet above me, and hovered, flapping his wings to stay in place.  I stood unafraid and transfixed.  Seconds passed.  Then, he lifted off higher into the sky, and flew downstream.

Now, Adahlia is 18 months old.  There is a lot going on with her health and mine, and so much is uncertain.  These are trying, difficult times, and sometimes I falter.  It is amazing how fast our lives have changed trajectory, and occasionally, my heart fills with a deep, stubborn, sadness.

This past Friday was one of those days.  Adahlia’s progress is slow and I am impatient.  I have to remind myself of the recent progress:  she no longer pulls at and points at the base of her throat, as if she is experiencing acid reflux or a discomfort at her thyroid.  Her digestion has completely improved – she now actually eats food, instead of just picking and tasting it.  Her appetite is suddenly ravenous.  We feed her all day, all different sorts of food.  Less than a month ago, at Christmas, I was very concerned about her lack of consumption.  She was 17 months old and still very dependent on breastmilk.  Perhaps 70% of her nutrition was my milk.  Not normal.  Not good.  But here she is now, eating all sorts of food, from little snack packs of baby food to soups to raspberries to bread with peanut butter to eggs to turkey to eggs to oatmeal and you name it — she eats!

I attribute it to the spagyrics that I’ve been doing to help her digestion, in addition to the ones to clear toxicity (including heavy metals) from liver, lymph, kidneys, and thyroid.

Yet, her blood is clearly an issue.  She looks like she’s 3 or 4 weeks post-transfusion and its not even been two.  She’s been taking exjade to clear out the iron overload from her bloodstream and I hope its working, because I will not be surprised if we are back in the hospital for another transfusion soon.

I am not entirely surprised.  When someone is as sick at a deep level as Adahlia, and one’s life is in such delicate condition, restoring health is a balancing act.  Things must be cleared but not too swiftly, or there could be too much stress on the system.  Things must be tonified but not too generously, or the wrong sorts of bacteria and the pathogenic processes could be strengthened, too.  I realize what is going on and luckily, we have the transfusions to allow us the time we need to  play with these processes, and coax her body into health.  Therefore, with her digestion improved, I have suspended the homeopathic spagyrics and have reintroduced the chinese medicine, which has done the best of job so far of lengthening and stabilizing the time between transfusions.  Soon, I will reintroduce the homeopathics, so as to keep up the process of removing heavy metals and detoxing her organs, which is important, especially with her taking Exjade.  I want that medicine to do its job and then get out of her system, thank you very much!

You can see that this is quite the unique process. There is no precedent for successfully treating and resolving this disease, which often complicates over time and results in the development of diabetes, hormonal imbalances leading to growth and puberty problems, cancer, and a host of other diseases, all before the age of 20.  This is her best chance at a healthy life and happy future.

With all this going on, the last thing we need is for me to go out of commission.  Yet, my health is changing too.  On Wednesday, the stent and second attempt at stabilizing my kidney was removed.  Things since then have been touch-and-go.  We’re doing what we can from the natural/oriental medicine perspective and I’ve added a few things I had not thought to do before, to drive energy downward, open channels, and reduce inflammation.  I’m not exactly sure what my status is, if the water is building back up within my kidney, and if I will need the surgery I’ve been hoping to avoid.  All I know for sure is that I need to be able to take care of Adahlia.  So, I focus on the daily things and on what I can effect.  Like, dinner.

On this past Friday morning, I took Adahlia to see her second children’s performer of the week at Cafe Au Play.  I hadn’t really intended on it — we had gone to see Red Yarn on Tuesday and I had left her waterproof pants there by accident.  When we went to retrieve them, Tallulah’s Daddy was just about to start his set, so we stayed to enjoy it.   Then, Friday afternoon, we headed to the park.  And this is where the second raptor blessing occurred.

At this point, as I mentioned, I was feeling kind of low.  I was concerned for Adahlia, and wasn’t sure about my own health and what that meant for our family.  There was this sad energy that needed to come out, and the playground was empty.  We sat together on one end of the four-person see-saw, Adahlia in front of me so I could steady her if she lost her balance.  As we bounced in rhythm, I began to sing softly, and it was kind of like a chant, kind of like humming.   At the risk of offending the native people, it sounded similar to a native american song or chant.  I sang whatever notes came.  I played with verses and kept returning to the same refrain.  I felt better as I sang, and Adahlia seemed to enjoy it.  She bounced and pointed out birds to me and I kissed her head.

Eventually, I became aware that three crows were circling, cawing, and dive-bombing a red-tailed hawk that was doing slow circles to our immediate north.  Adahlia and I watched them and I continued to sing.  And then I couldn’t help myself, I thought:

If those crows fly away and leave that hawk alone, then we’re going to get better, everything is going according to plan, and I just need to keep at it.  We will be fine.

Immediately, I cursed myself for thinking such a thing.  After all, if they chased him away, was I going to take it as a sign that I was headed down the wrong path?  That I was simply, stupidly, endangering myself and Adahlia?  Why do I put myself in these positions?!?

But then, two of the three crows flew off.  The third continued to pester the hawk, driving it even closer to us, and then it too flew away, leaving only the hawk.  Riding the wind, the hawk came closer still, until it was directly overhead.  My head craned back fully to look at it, I could see that its head was turned down and it was looking at us.  Beautiful.

If he circles us three times in blessing, then I should relax.  We are indeed on the right path. 

Dammit, Erika!  I thought.  But I couldn’t help it.  It was almost as if the thought was placed there for me.  That I was simply listening.

And the hawk began to circle us.  One, two, three times.  And then it adjusted its wings and rode the wind east.

The next day, I received a random message from a friend I haven’t seen in years, telling me that that very night, Saturday night, there was a fire circle with Eliot Cowan, herbalist and healer of native american tradition, and author of Plant Spirit Medicine.  She said we should go.  Moreover, the fire sacred circle was being held literally a few houses down from ours.

I cannot deny such kismet and decided to go, but life got busy and I forgot all about it.  That night, building our own fire in our living room, I heard a sound like a chime and “recalled” the fire circle.  Disappointed and assuming we had missed it, I went to the kitchen to check the time.  The clock said 6:50 pm.   So, I packed Adahlia up and we went.  (I don’t know where the chime sound came from.)

I had never been to a sacred fire circle before, and it was lovely.  There was another little girl there, perhaps 7 or 8 years old.  I knew no one there (my friend could not go herself) and everyone was very gentle, very relaxed, and very kind.  There was also a dog and a cat, which made Adahlia very happy!  We gave thanks and made offerings to the fire for Adahlia’s healing and shared jokes with the community.  We had to leave before the meat of Eliot’s talk, due to it getting late, but it was a special time.  We both enjoyed it.  I’m not sure why we were called to go to it, but I’m glad we did.

This past week, I’d been doing some work with cultivating the sacred fire that is known as the Life Gate in Chinese medicine, or Ming Men.  My own sacred fire had been weakened in me prior to pregnancy, and the pulse for it, my right kidney pulse, had completely died out during my third trimester with Adahlia.  The area for it on Adahlia’s back is dark and empty, almost black.  This past week, my focus has been trying different ways to rekindle my own Source Fire energies in order to keep my kidney from collapsing under water, to open Adahlia’s Life Gate and stoke and ignite Adahlia’s own flame of existence.  Perhaps, then, this is the explanation.  Perhaps it is a sign that I have been heard.

Well, it certainly is late again.  There are still many things I could say about Adahlia and how she’s doing — little cute things she does, stories of how wonderful she is and how much I love her — but I’ll have to save them for later.  There is more work to do.  And it is time to rest.

Thank you for your continued prayers, blessings, energy, love, and support.

Love and light to you and yours.

Hello loves,

Did you enjoy the holidays? Perhaps they were a pleasant reason to have another glass of wine, an extra helping that “stuffed” you over the edge, and maybe another cookie, or two, or three. Perhaps you knew these items weren’t right for your diet, (maybe they weren’t gluten-free and you’re a gluten-free fan or maybe you’ve been trying to cut back on sugar) but who wants to be nit-picky over the holidays? Not you! (Or me!)

Well, there’s no harm in a little over-indulgence when you balance it with a cleanse or fast. It’s New Years, and many folks are thinking about resolutions. If improving your health is a big part of yours (and why shouldn’t it be?) I invite you to join me in a prayer-and-fast for the next 28 days.

“Good-god,” you may be thinking, “a prayer-fast. Why on earth would I do such a thing?”

Simple. Because you already know the benefits of cleansing your body: increased energy, less weight (physical and psychological), and greater strength. Committing to a month of prayer, or focusing on your spirituality, improves your sense of connection to life and thereby deepens your enjoyment of it.

Let me explain further and see if I can get your interest.

The idea of this prayer-fast is very simple and loosely organized:

For the fast: remove one thing from your diet (or more, if you can do it safely) that you feel might be unhealthy for you. It could be sugar, alcohol, dairy, red meat, wheat, or something more specific, like, chocolate. (Or not!)

Notice that I said it can be something you feel isn’t right for you, right now. You don’t have to have a dependency, reaction, or actual food issue. Remember that most foods, including the ones listed above, have redeeming qualities and are very right in the right quantities for the right people. This isn’t about bad foods or about punishing yourself. This is more about taking something out in a spirit of curiosity and adventure. To see how you feel. It’s an experiment!

For the prayer part, well, this is completely up to you. Perhaps you celebrate the balancing wisdom and fierce beauty of Nature. Perhaps you find God in devotion to religion. Perhaps you recognize that there is a Source of energy or love that connects and enlivens all creatures. Perhaps you have no recognition whatsoever of such mumbo-jumbo but while making love, you experience a loss of the boundary of self and other and a freeing emptiness that also feels like an expansion and could only be described as bliss.

Or maybe you just want to experience those things.

Either way, your spiritual health… (and emotional and physical health, because you are one being and if any aspect of you suffers the rest eventually will, too.) … would probably benefit from a month where you commit to taking a few moments from your day to allow yourself to explore prayer, or to sit quietly in the dark just observing your thoughts, whatever suits you best. And again, it’s more about experimentation and playful curiosity than anything else. It’s about pushing your boundaries and finding new dimensions to your self-hood.

If the idea of restoring your spiritual health makes you uncomfortable, think of it like this: It is like when one guy falls off the mountain: he’s either gonna drag his buddies down with him or there’re going to have to pull him back up.

Not sold yet?

You know, it’s always the things that are most uncomfortable for us that offer the most opportunity for growth and transformation.

Ha! Got you there! Now, are you sold?

Good!

The only thing I ask, if you feel inclined, is to offer up part of the reason behind your fast and prayer as an intention for Adahlia’s health.

The curious ferrets among you wonder: What am I doing?

Well, I am no longer on the super-strict anti-inflammatory diet I was on for a few weeks there (thank god!) but I must admit I felt good while on it. So, I am going to go sans-sugar – all sugar including maple syrup and chocolate, yet again. (I will, however, continue to use raw honey, as it has amazing health benefits.)

See how easy this is?

And, I may also decide to cut out wheat again, or dairy. I’m not sure.

Super flexible!

If you wish to join in, feel free to let me know via one of the many ways I am available, and I will think of ways to keep people motivated or amused, or maybe even both. You can also contact me if you have any questions or run into any problems or concerns.

And for those who would like an Adahlia update: She has learned to stack blocks! After watching Joe and I play with them (for we are like children ourselves) and gleefully destroying our towers, a few days ago, she marched over to the kitchen, alphabet blocks in hand, sat between us as we chopped veges for a stir-fry, and began to stack blocks. She got up to 7.

Seven! I know, and she’s only 18 months! (At the pediatrician’s office a few weeks ago, I learned that she’s supposed to be able to stack 4 blocks by now, and 6 by 2-years.) I could not believe it.

Then, a couple days later, while taking a break from boxing up our Xmas tree ornaments, she began stacking again and I snapped off this amazing (and fuzzy) picture:

Such delicacy and focus!

Then, just yesterday, she built a tower 9 blocks high. No joke! Nine blocks!

But do you want to know the best thing about it? (Because we really don’t care about how many blocks she stacks.) Or, perhaps, the cutest thing?

Its that after she places a block she immediately brings both hands to her solar plexus, right below her rib cage, and presses her palms against herself, as if steadying herself, and holds her breath, waiting to see if they’ll stay put. When they do, she quickly reaches for another block. And again, she steadies herself and holds her breath. She repeats this process, her excitement visibly mounting, but she restrains it, and keeps her focus.

Amazing!!

When the blocks inevitably teeter and fall, we congratulate and encourage her. And we all laugh.

Building health is like building blocks.

You just go one at a time.

When you fall, celebrate how far you got, laugh, and start again.

With this prayer-fast, we’ll take it one day at a time. And I guarantee you will build something worth celebrating!

Yesterday, at 3 weeks since her last transfusion, Adahlia received another blood transfusion. Her Hb was 7.7.

Adahlia is doing well. The transfusion was one of her better ones: one poke, and the blood bank processed the blood quickly so we were actually out of there by 4 pm. While we waited for the blood, I took her down to the main lobby, where a beautiful older woman played ragtime, jazz, and favorites like “Somewhere over the Rainbow,” on the piano.

Adahlia loves music, so we stayed there nearly an hour as she danced and charmed the Starbucks patrons, and enticed me to chase her around tables and chairs. Afterwards, for fun, we rode the sky tram down the hill and back up. It was only her second time on it, and she loved it. At that point, her blood was actually ready and waiting for us, so we hurried back and the nurses hooked it up to her IV. Another four hours later, and we were done.

Adahlia’s liver and kidney function tests are really pretty good. Her retic count (baby red blood cells) actually increased from an absolute number of 5+ to over 11. This is great news because it’s been hovering at 5 for the last couple months. In the past, it’s gone as high as the mid-thirties, and hopefully we will be seeing an upward trend!

The only negative is that her ferretin was up to 821. It’s really increased a lot in the last few months – it had held steady at about 500 for almost a year. Then, late fall, after I had started supplementing her diet with extra amino acids and antioxidants, it started rising quickly. Its odd, considering that I’m not supplementing her with iron (and it’s not in any of her multivitamins.) She is getting iron from nutritious food sources, but that supposedly shouldn’t be a problem. I wonder if she is simply absorbing her nutrients better? That could explain why the iron in her blood is rising.

At any rate, with her ferretin so high, I realized that it was imperative that we start Exjade immediately. Exjade selectively binds to iron and won’t help with the other heavy metal toxicity, but we should start seeing a downward trend of her blood iron levels. I gave her the first dose yesterday when we got back from the hospital, and another today. It did seem to make her drowsy, which is unfortunate, since she usually feels so good after transfusion and had just started getting her energy back after being so sick. But she perked up a couple hours after I administered it, running throughout Panera, chirping and squeaking and playing with anyone who would meet her eye.

I have to say that it breaks my heart (is it possible for it to keep breaking? It’s more like it deflates it, I suppose) to have to give her this medicine. Exjade is not approved for children under 2. There are scary risks involved in taking it, such as loss of hearing and vision. It is a new drug, which means it hasn’t been studied very long. They don’t really know what all the side effects could be, especially when given to a toddler, but there’s a long list of serious and undesirable ones, including, ironically, bone marrow failure.

But I have to give it to her. I tried homeopathy and natural methods, and it wasn’t enough. The alternative I have to giving her this medicine is iron overload, organ failure, and death. And it’s getting too close to the danger zone. So I have no choice. I have to dissolve this toxic substance in fluid and squirt it in her little mouth as she gazes at me with open eyes, and say “good job!” She trusts me take care of her. To do the right thing by her. And I give her yet another poison.

Such responsibility.

Of course, I know that if it weren’t for modern medicine, she would not be here today. This story would have ended a long time ago, when she was six weeks old.

Yet, “First, do no harm” is the guiding principle of natural medicine tenets.

And it seems that absolutely everything, everything, that as a natural health practitioner I wouldn’t have wanted for my child, I am forced to do to her. It tears me to pieces.

As we drove home from the hospital, and I knew what I would have to do when I got home, my eyes filled. Adahlia, of course, was fine – swaying and bobbing her head in rhythm to the music – and I rallied to join her with smiles and song. But as we drove up the hill to our house, my frustration mounted and silent, helpless tears spilled out onto my cheeks. What more could I have done? Why didn’t the homeopathy work? What am I missing?

And just then, as I pulled onto our street, I saw the most amazing thing: a rainbow stretched across it. Instantly, the gorgeous, vivid colors arching into the sky dried my sadness. I nodded. A message of hope: Don’t despair. This is just part of the journey, part of the plan.

Ok, I thought. Okay.

After all, this is where Chinese and natural medicine can really shine: In guiding out the toxic elements of necessary drug therapies. In mitigating discomfort. In reducing unwanted side effects and maximizing therapeutic benefit.

This is integrative medicine. And we can do this.

Before I let you go, I wish to share some very good news that we received this morning. Adahlia’s food intolerance, sensitivity, and allergy tests came back (IgG, IgE, and IgA antibodies) and she has absolutely no appreciable food reactivity. Zero! She can eat a full array of foods. She has no limits on the sources of her nutrition.

That’s huge.

That’s a huge, huge win for the power of natural health and breastfeeding. Her gut is intact and her immune system is not overreacting.

We can work with that.

Maybe, the digestive layer is what needed to heal first, before we could get to the deeper layer. We needed to heal the digestive element before we could get to the bone. From both a natural and Chinese medicine health perspective, that makes sense.

And so we press on.

Please continue to send your light, love, energy and prayers of love and health to Adahlia. There is great power in the mind and spirit. Let’s use it to effect a miraculous transformation.

Love,
Erika

Just a very quick post to thank everyone for all their love and prayers. Adahlia has been doing very well for the last 24 hrs – very happy, energetic, bright-eyed, and attentive. Her nose is still running a very thick, slightly blood-streaked mucus, and she is still not looking rosy in the cheeks, but the diapers are not quite as horrifying. Yesterday, I rocked her and sang to her to comfort her, as it is sometimes the only thing that calms her, and I could not figure out the source of her screaming distress. Yesterday, she napped for over three hours in one hazy, unhappy stretch. But today, today she is making happy chirping sounds, dancing to the radio, and looking eagerly at everything we pass on the nature trail. Today she wasn’t ready for a nap until nearly 2 pm. Today, dare I say it?, her lips may be just a touch less pale, and perhaps there was a hint of color in her cheeks. But it’s hard to say. It’s hard to separate what you want to see, and what you’re afraid of seeing, from what is really there, sometimes, even for people well-trained in the healing arts and able to see multiple layers in the complexion.

This past Sunday, 3 days ago, it was gorgeous here in Portland, and amazingly, it was also sunny and over 50 degrees on the coast! I decided we all needed to go “grounding” – the practice of walking barefoot on the earth (dirt or soil, doesn’t matter) – to let our bodies reconnect with their roots, the earth itself. Grounding reduces stress, physiological and psychological, and resets cortisol levels. Joe agreed an adventure would do us good, even if it was just a distraction to keep us from simply staring at and worrying about Adahlia. So away we went.

To minimize drive time, we drove a straight-line distance thru Tillamook and ended up at a place called Symons Viewpoint – a lovely stretch of beach with three giant sea boulders like eggs, one of them carved into a graceful arch. To our surprise, the sea was full of nearly a dozen surfers in wetsuits. The beach had a pleasant number of people on it – some strolling, others walking dogs, and one group of folks playing frisbee and making an elaborate sand castle city. The weather was perfect – low winds, bright sun, and warm sky. We found a quiet stretch of sand, set down an old bedsheet for a blanket, took off our shoes and socks, and set to playing.

And oh, did we play! Adahlia had an absolute blast. She surprised us both, for she certainly didn’t look, or act, like a desperately sick kid. She ran barefoot all up and down the beach. Pants rolled up, she flung her unsteady toddling gait out towards the waves, with me right behind her, and as the waves rolled in, I’d grab her wrists and lift her into the sky, spinning and shrieking, dipping her toes into the surf that swirled around my ankles and setting her down again where the water was just barely wetting the sand. She didn’t seem to mind that the water was freezing cold on her feet. She loved chasing the waves out, and having the ocean recede only to chase her, roaring and screeching, back up the beach. We danced, twirled, and did acrobatics. Joe did running leaps over her head as she stood rooted in the sand, giggling.

Adahlia loved playing with the water and sand so much that she didn’t want to leave. When we finally did, hiking up to the car while surfers in tank tops or partial wetsuits sat drinking beer, petting their Labradors, and gazing at the sunset, we all felt that it had been a time of great healing.

“Mother, mother ocean,” as it’s been said.

I do feel that this is a huge healing event for Adahlia. A “healing crisis” of sorts. I believe these medicines are draining toxins from her brain and bones, and that she is just now, just today, starting to get a taste of relief. I believe the Chinese medicines have been working well up to this point, and that they still work, but that by changing direction with these homeopathic spagyrics, we’ve shocked the body a bit, much like changing up your workout, and now we are moving past a plateau. It’s a bit more extreme than the Chinese herbs, but she does appear to be handling it, and I’m no longer quite so concerned that the detox might overwhelm her organs.

I don’t know what her blood counts will be tomorrow, when she goes in for lab work and a blood transfusion, but I wouldn’t be surprised if they were terrible, or, starting to trend in healthy directions.

I am very confident in that what we are doing for her is currently the best course of action. If her iron is still too high, we can add the exjade to chelate it. But we won’t start her on steroids yet. It is like this analogy from an old professor of mine:

Let’s say you decide you want to start using a room of your house again that you haven’t used in a long time, like an attic. You go out and buy all new furniture for it. Does it make sense to put your new furniture in a dusty, dirty attic full of trash? No. You first remove the old furniture and debris, then you wash it thoroughly, and then, only once it is clean, do you put the new furniture down. Now, you can live in the room happily. The same is true of the body.

Thank you all again for your love and prayer and support. I will update you all some time tomorrow or the next day, and hopefully, in the next few days as we move out of this crisis, I will also be able to write a post of some general, happy updates on how Adahlia’s been growing, too. She had a very happy Christmas and holiday season and we’ve got lots to report!

Think of us tomorrow while we are at the hospital getting her blood drawn and transfusion. Joe will be at work, and this is only the second transfusion she’s had where we won’t have him with us. She’ll be strong, though, I know it. Send her your love and comfort.

Thank you again! Be well. Love to you and yours.

There’s a lot to say about Adahlia’s current health status.

First, she’s really very sick right now.  She had a temperature of 102 about a week ago, which went down after about 30 hours, and due to the amount of drooling that accompanied it, we attributed to teething.  But though the temperature dropped, she remained very irritable.  Very clinging to me.  She was very pale. And then two days ago, her nose started running a copious amount of clear discharge.  Her diapers had been a mess since we started the homeopathic spagyrics but the mess recently went up a notch on the nasty scale:  very stinky.  Dark orange, green, and even blackish.  Watery.  And then, around the time of her nose beginning to run, they began to be full of clear, stringy mucus.

Meanwhile, my throat had started to hurt too.  It was a particular sort of raw that I hadn’t felt in more than a couple decades, and reminiscent of when I was a kid: it felt like strep throat.

Here’s a little more backstory.  You see, Adahlia and I had both unknowingly been exposed to strep over Christmas, while visiting relatives.  (Now, strep of course, does not cause runny noses.  But remember that this did not develop until at least 5 days after Adahlia’s other symptoms, and once one infection takes hold, the body is less able to fend off others.)

When I found out that this relative that was under the weather actually had strep, I took measures to clean out our tonsils and prevent it from lodging with us.  When my throat began to hurt, and Adahlia continued to look awful and sleep too much and cling to me, I decided we needed to have strep ruled out.  So, the day after New Years, just to be safe, I went in for a quick throat check and rapid-strep test.  The nurse said my tonsils were red and looked inflamed, but there were no white patches.  The test for strep was negative.

That afternoon, I then took Adahlia to her pediatrician to rule out strep throat for her, too.  The pediatrician (one substituting for our regular pediatrician) was unconcerned about strep, saying that the CDC says that children under 3 do not get strep throat.  They can only be carriers.  Adahlia refused to open her mouth for him so he checked the other typical orifices (ears, nose, eyes) and listened to her chest.  He pronounced her situation viral (relying heavily on the most recent development of a runny nose and mucus in the diapers, which had started that morning).   He agreed with me that she did look rather sallow, and did a quick test of her hemoglobin.

It was only 8.6 and she is just 2 weeks post-transfusion.

This isn’t necessarily a good news story.  In the last 6 months, Adahlia has moved from needing transfusions every 5 weeks, to every 4 weeks, and now down to every 3 weeks.

And today, she has a wet-sounding cough full of phlegm, and her nasal discharge is yellow and thick, no longer clear and running.

Clear signs of an infection.

But there is more to this story, and the “more” is what has me hoping that it is, in fact, a good news story.

As I said earlier, when we arrived back to Portland from visiting said relatives, I had taken measures to prevent strep from making a home with us.  Specifically, I had added a medicine to Adahlia and I’s regime as a preventative measure.  (After all, adding an infection of streptococcus to chronic kidney disease or auto-immunity or bone marrow failure could be a really dangerous development.)

So, in addition to the homeopathic spagyrics to detoxify and stregnthen our livers, kidneys, and lymph, and the ones to clear out excess iron, build new blood, and remove heavy metals, I added a homeopathic spagyric to detoxify, drain, and clear the upper respiratory tract, including the tonsils.   We started taking this immediately upon return and about 24 hours before Adahlia spiked a fever.  And then she started acting sick, and I started feeling exhausted, and my throat began to hurt.

Coincidence?  I think not.

Did we get strep?  Of course not.

So what’s happening?

The medicines are working, and I had not anticipated how much they would move.  In my case, it is clearing out the cellular “memory” of strep throat from my tonsils, along with any cellular or energetic lingering affects of the multiple strep infections I had as a child.  Basically, it is doing what it is supposed to – clearing out and resetting my tonsils and upper respiratory tract.

But its effect is so much more extreme for Adahlia.  Is it clearing out a lingering viral agent?   Perhaps one lodged in her marrow and brain, like a herpes virus?

I believe so.

It could also be that she is weakened by all this detoxing, and that she has contracted a virus.  But, I don’t think that it is as likely.  After all, Joe and I are not sick like she is (at least not yet).  And we are kissing her little snotty mouth all the time.

But, if she has a lingering, sub-clinical viral agent, what about the heavy metal intoxication?

Well, it is possible to have both.  After all, once the terrain of the body is compromised, all sorts of things can go haywire.  It gets very chicken-and-eggy.

So, about the heavy metals:  we found out that Adahlia has high levels of mercury, antimony, and silver in her system.

How, of course, everyone wants to know (including me) did this happen?

The short answer is that we may never know.

The longer answer is that we need to be realistic.  Our country is very toxic.  Our world is very toxic.  Antimony is a heavy metal toxin similar in its potency to arsenic.  It is found in plastics and in materials used in paints and strippers, amongst other things.  Did I become exposed to it as a child while my parents were remodeling?  Did I become poisoned with it when I refinished my bathtub and painted my walls in my last house in KC?  Or perhaps, it was when I painted my walls here in Portland?  Perhaps my apartment was toxic?  Perhaps the pipes are bad? Who knows.

Mercury, of course, can be found in fish.  Japan recently had its big nuclear disaster, which occurred shortly before I became pregnant.  We do eat a lot of fish – particularly salmon – though I do not honestly eat much in the way of canned tuna.  But there are other places where you can get mercury poisoning.  Again, as a child, I once broke open a thermometer and we watched the mercury roll around.  I don’t remember touching it, but who knows.  Would that really have been enough?  As an adult, I mostly have white fillings in my cavities, but I did have a couple that were originally amalgam (mercury), and I still have one that has never been replaced.  Is that the problem?

Silver?  Well, I enjoy wearing silver jewelry more than gold, but that’s about all I can say about silver.

Yes, it certainly is confusing, especially as we aren’t the types of people one could easily point to and say, “well, they live an unhealthy life.”  We eat organic fruits and veges.  We eat free-range, organic, or natural chicken and other meats.  And it really can’t be the vaccines, because they don’t put mercury in vaccines anymore, and Adahlia has only had one shot of one vaccine, at any rate.  (But I’m so glad now, that I did not give her more!)

There are lots of thoughts on what could be to blame.  And while I’m not big on fear, I am big on realism, and again, the truth is:  None of us live a toxin-free life.  If this could happen to me and to Adahlia, then it can happen to anyone.

Now, I was recently informed that there are several people who think that the Chinese herbs I am taking are to blame for Adahlia’s heavy metal situation.  And I must admit, this greatly disappointed and saddened me.  I had thought that these particular people supported me and believed in the intelligence of my efforts.  And I realized that if these people think the Chinese herbs might be to blame, then surely, there were others.

So let me clear it up:

On one hand, I understand the concerns.  China has some very serious pollution issues.

However, I very, very, very strongly doubt that any of our problems are due to the Chinese herbs.

Here’s why:   For one, the herbs I receive for Adahlia and I are from a world-renown, well-respected physician, and the herbs are independently tested for pollutants and toxins.  If there are top-quality herbs out there, Chinese or otherwise, these are them.  Second, China is a big country.  Most medicinal herbs grow in very specific, wild places.  Saying that all of china is polluted is like saying that there are no organic, non-gmo foods in the US because so much of it is gmo and cross-contaminated.  So, if we are going to say that all of China is polluted, then we need to also say that all the US is polluted and can’t be trusted, either.  Third, the herbs I have been taking have helped her.  Of course, you’d have to go on my word on that.  You weren’t here when she was a newborn and absolutely crazed and clawing at her head and screaming, with strange tics, unable to breastfeed without doing something that looked like swimming freestyle, and other behaviors that clearly told me, if no one else, that something was not right in her brain.  You haven’t witnessed her getting better firsthand, and unfortunately, there’s no measurement for preventative medicine, because there’s no way to say how bad things could be right now if we hadn’t taken the herbs. But I tell you:  she would not be who she is today if I had just let things go.

Ok, so is the toxicity due to the Chinese herbs I took when I was pregnant?

No.  Why?  Because, first of all, I wasn’t taking any herbs or medicine at all – Chinese or otherwise – when I conceived Adahlia.  I was not, and still am not, a huge fan of taking a bunch of supplements if you have reason to believe you are in a good state of health. (Too much of anything can be detrimental to the body, and it is possible to over-supplement.) About a month into the pregnancy, I began taking Chinese herbs because I was feeling very weak and exhausted and I had a sense that I needed help to carry this pregnancy to term.  (Given what happened, with my episodes of kidney failure, I’d say I was right on.)  I was under the care of the foremost practitioner of Chinese medicine for pregnant women here in the NW – a woman who teaches at both colleges of oriental medicine here in Portland, and who has helped hundreds of women over the past few decades conceive and carry to term healthy, happy babies.  She has helped infertile women who have tried everything else, including fertility drugs and invitro fertilization, and were unable to conceive until she gave them acupuncture and Chinese herbs.  She has helped women carry to term when they have miscarried multiple times before.  The herbs she prescribes do not result in a bunch of babies with genetic or other problems.  The herbs she prescribes save babies and make women into mommys.

So, please, folks:  stop blaming the Chinese herbs.

It is like in the Superman movie, when people react with fear and hostility towards what they don’t understand, towards what threatens their perception of safety in their world.

Don’t be the masses, folks.  Be Lois Lane.   Chinese herbs are amazing.  Learn about them before you disparage them.

So how DID Adahlia get heavy metal toxicity?

I don’t know.   My best guess is that it is environmental toxicity built up over the last couple generations or that I was unknowingly exposed to something a few years ago. Think of all the plastics, pollutants, chemicals, herbicides, pesticides, and GMO foods that have been developed and distributed since 1900.  How many generations of people does it take eating, drinking, and breathing, teeny-tiny amounts of poision and heavy metals before it starts to build up and affects the genetic code?  How many generations can eat genetically modified foods before you start having a bunch of genetically modified people?   My guess is that there are a lot more people out there with heavy metal toxicity than we’d like to think.   And if I had to do it over again, if I were planning to get pregnant, I would do a full detox beforehand.  I would flush everything, in every way, heavy metals and otherwise.  Because at the time I conceived Adahlia, I thought I was healthy.  I was part of a healthy, active community and I ate organic, health-full foods.  Adahlia and I’s health collapse was a surprise to everyone.

The truth is that given the state of our environment, the question of how Adahlia got heavy metal toxicity is somewhat immaterial.  While I will try to figure it out, the most important thing is for me to figure out how to get it out of Adahlia.

And that’s what I’m trying to do with the homeopathic spagyrics.

What’s amusing (sort of, and mostly sad) is that so many conventional, biomedical doctors discount homeopathy.  After all, homeopathy is effectively just the energy of the plant, not the plant itself.  In other words, there’s nothing measurable in the medicine.

And yet, these homeopathic spagyric medicines are clearly doing something.  The one I took for helping me sleep has worked for both my mother and myself.  The ones for alleviating stress have helped both my partner and myself.   The ones to boost immunity have helped Adahlia’s white blood cell counts come up.  And these latest ones have certainly kicked up some dust in Adahlia and I’s respiratory tract and tonsils.

So, there’s every reason for me to believe that the one for removing heavy metals will work, too.  And, hopefully, also they will remove the excess iron from her blood.

After the toxicity is gone, viral or metal or otherwise, hopefully Adahlia’s bone marrow will kick in.

If these medicines aren’t able to remove the heavy metals, we will have to resort to very powerful IV medications to leech out the metals.  Unfortunately, such drugs are toxic in themselves and patients using them need to be monitored closely to watch for liver and kidney failure.  As of yet, I have no idea if a doctor would even agree to administer them to a toddler, especially a toddler with bone marrow failure.  It could simply be too dangerous.

So, hopefully these homeopathics will work.   There are signs that maybe they are working:  the stinky, dark, discolored poop in her diaper, for example.

If these medicines are working, you might ask, why is Adahlia needing transfusions more frequently?

I am thinking that it might be because her system is under strain from the metals being pulled out from her tissues.  In her blood stream, they wreck even more havoc than they did when they were stored.  But they must be pulled out in order for her elimination organs to then push them out of her.

It is obviously a very tenuous and tense time.   She looks awful and I am concerned.

It is very difficult to be both medical practitioner and mother to a very sick child with a unique and life-threatening illness.  Looking at her, part of me starts to panic.  The other part of me urges me to remain calm, to remain observant, and to rely upon the theories and understandings and wisdom I have learned about the body and am applying to her.  And yet, as difficult as it is to balance these two sides, it is also a blessing.  Because when she is very ill and refuses to eat anything solid, as mother, I can breastfeed her, and nap with her, and hold and comfort her.  I have my mother’s intuition, which has never once, not yet, failed me.   And as an integrative medical practitioner, as the one directing the blending of these therapies from all these different traditions, from conventional to herbal to spiritual medicine, I have the best chance of finding a cure for her.

And that’s what its about for me.

That is my life, nearly every waking moment of it (and many of my dreams).

I will find a cure for her.

If these medicines don’t work, I have more tricks up my sleeve.

There are more rabbits to chase.

There are more trees to sniff up.

More holes to slip into and shine a light around.

I do hope researchers find a cure for DBA.

But if they don’t, I will.

And if I don’t, I will make such a ruckus that eventually, someone will.

At the last transfusion, Adahlia’s doctors were pushing me to start her on steriods.  I asked them which forms of DBA respond to steroids and which don’t and they said that no one is tracking that information.  In other words, while we know that there are different genes that have mutations associated with DBA, such as RPS19 and RPS26, they aren’t recording that so-and-so, with the RPS19 mutation, didn’t respond to steriods, while this guy over here with the RPS26 mutation, did.

I was astounded.  Wouldnt that be valuable information? I asked.  Its not like it would be impossible to track.  We know who has various mutations.  Couldn’t we make a table of whether or not they responded to steriods and see if there is trend?  Maybe that would help parents (and doctors) decide if putting a child on steriods is the right decision or not.  I mean, to have the information and not track it… well, that is just bad science.

The doctors response was that they wished that such information was tracked, but: “honestly, no one’s invested enough to do that.”

….. Invested enough?!?  In the lives of children??

Well, if its a matter of investment, no one — and I mean no one — is more invested than I.

It’s only been 2.5 weeks since Adahlia’s last transfusion.  And she needs one.  She very clearly feels rotten.  I watch her closely and constantly.  I wonder how fast, exactly, is her Hb dropping?  Will she make it to Wednesday?  What will her count be by then?  Is she in danger?  Is this detox maybe too much for her system to handle?  Can her heart take it?  Her kidneys?

Tonight, as I tucked Adahlia’s feet into her pajama footies and rubbed castor oil onto her belly, I told her:  “I’m not giving up.  You hang in there.  We’ll get you through this.  And if this doesn’t work, I have more ideas.  There are other things we can try.  I’m not giving up on you.  We will get you better!”

And I know one other thing: she’s as tough and spirited as they come, and she’s not giving up, either.

If you read this blog, and you’ve read this far (bless you!) please pray for Adahlia.  Keep her in your prayers for the next 4 days, until she has her transfusion on Wednesday.  Send her your angels and protectors.  She needs your light and love and strength!!