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!!

I just got word back from our naturopathic consultation with Dr. Erica Zelfand that Adahlia’s hair test showed heavy metals.

Which ones, I don’t know yet.  If its iron, well, that is unsurprising because she is iron overloaded at this point.

If its not just iron that they found, this has big implications.  On one hand, it is scary and upsetting.  I trusted this house.  The water.  We moved here when I was pregnant, after all.   We thought it would be healthier than my apartment with a flooded basement and mold in the unventilated bathroom.   My poor, poor developing baby!!  What an influx of emotion and swirl of thoughts.

On the other hand, it is hope-inspiring.  I have long suspected that something is attacking Adahlia’s system (a toxin, a virus) as well as mine.  With with the amount of healthy lifestyle and energy healing work I do, for her to simply be weak just doesn’t make sense.  As anyone with any training can tell, Adahlia’s vital force is strong.  So what’s affecting her?  Is it in the house?  Is it in the water?  What’s going on?

Well, if its something like a heavy metal toxin, we can clear that out of her system!  And then she should be able to recover.  But in a way, I can barely believe it.  With more children being diagnosed with DBA every year, I would imagine that a doctor out there somewhere has checked them for heavy metal intoxication.

Right?

Meanwhile, if its just the iron overload that has showed up in her hair, I will be both relieved and sad — sad that we cut off her beautiful baby curls from the nape of her neck without creating new hope for a cure.  (Its silly, I know.  To be truthful, the result is that now she looks like a little pixie with a asymmetrical, hip haircut. Very adorable.)

The good news is that whatever the results say, I have already actually begun a system to remove iron and major toxins, including heavy metals.  A week or so after Thanksgiving, we started us both on homeopathic spagyric medicine.  I had attended a seminar on their use in conjunction with Chinese herbs to treat difficult, chronic, and degenerative diseases like Lyme disease.  Spagyric medicine is alchemical medicine.   Homeopathic medicine is medicine diluted in water so that the chemical molecules are no longer present, and just the energy of the medicine remains.  Homeopathic and spagyric medicines are very popular in Europe as low-cost, effective health care. Critics of the homeopathic and spagyric process refer to it as hocus-pocus or placebo. Proponents of this sort of combined medicinal process tout its effectiveness and its virtually absent side-effects.

This particular company, based out of Germany, takes pains to separate the yin and yang nature of the herb through an alchemical process before recombining and diluting it homeopathically.  Those who study alchemy admire their work.  They’ve won awards for innovation and their products came recommended by practitioners I trust who have had great results with them.

And so far, I have reason to believe in their efficacy. First, I have experienced improvement with them, and second, I’ve seen changes with Adahila.

Adahlia LOVES the medicine.  She is very eager to take it.  And she’s a pretty good little barometer of what’s good for her.  Just as important, her poop has changed.  It has become drier (clumpier, almost pellet-like) and very dark.  Blackish at times; other times green.

What does this mean?  That on some level, it removing something, most likely iron, out of her system.

Hooray!  The big question remaining is:  Is it chelating enough?

That remains to be seen.

But if she has other heavy metals in her, it should be able to chelate those out, too.

(I would be surprised if she is poisoned with aluminum, as I took steps several years ago to reduce our exposure to it by switching to all stainless steel cookware, etc.)

Please keep us in your thoughts and prayers as our latest mystery unfolds.   I have hope that things are turning around, even if it is slowly, and I know that positive thoughts and prayers for recovery go a long way towards making it a reality!

Much love to you and yours.

I write this post in the greatest of haste.

A good sort of haste. The sort of haste experienced as a bartender at a jammed-up college bar.  The sort of haste where 21 old kids are screaming drinks and shots and professions of love and bottles are flying in and out of wells and top shelves and money is changing hands and everyone’s laughing and dancing and shouting and – oh, wait, there’s a fight and your barkeep just leaped over the bar to throw the guy out – and oh my goodness its suddenly lights up and there’s hundreds of dollars in your tip bucket and the cash register exactly matches dollars in for drinks sold and you’re just about the cat’s meow.

This is an entirely different sort of haste but haste nonetheless.  A very focused, humming, sort of happy haste.  In truth, its not really haste so much as being in a state of Flow.

Because Joe is out with the baby buying chicken feet for the broth I’m about to make for us.  I have maybe 30 minutes.  Maybe.

(And if you’re thinking “ewwww…. chicken feet?”  Well, I totally understand.  I’ve been there.  On many levels, the entire business is repugnant.  But, my dear, you would change your mind if you tasted the broth because it is so clean and flavorful, and it also happens to be extraordinarily healthy.  Just like organ meats (liver, kidney, etc.)  We have fallen so far from the wisdom of living in symbiosis with the gifts of life from our planet.  And so I honor the chicken and its feet… and then I slice them up to boil in broth.)

In 30 minutes time, there is so much to say.  So much has changed in the last couple of weeks, for Adahlia and I both (hopefully).  And I realize I have not updated any of you kind folks with pictures of her since she was one year old, and so here it is, along with some stories:

Winter weather is upon us in Portland Oregon.  I recently went with Adahlia to the store to purchase some necessary items to keep her warm.  She picked out a bluish-purple coat with little owls on it. She also picked out a hat — a hat that is clearly much too large.  But she wore it all around the store, which was a big deal because she has a fascination with hats, as long as they are on someone else’s head.  I was psyched!  Finally, a hat she will leave on, just in time for the coldest months of winter!

But when I tried to give her the one in her size, she took if off in disgust.

This is the one she wanted…

She is just about the most beautiful little thing you’ve ever seen, no?

I’m very excited and hopeful because I’ve started incorporating homeopathic spagyric medicine into our routine.

(I’d be happy to talk with you about it sometime.  It involves alchemy and separating the yin and the yang of the substance and then combining it back together.  The result?  A very powerful medicine!)

After doing some self-experimentation in the last couple of weeks, I have discovered that the spagyrics combined with the chinese herbs and an anti-inflammatory diet allow me to stop doing the tincture of western herbs and other homeopathics, and reduces my constant kidney pain from a 3/4 to a 0/1.  Since its worked so well for me, I’ve started doing it with Adahlia. My intention?

1) To reduce and resolve her iron overload situation

2)  To stimulate her bone marrow to make more RBCs

We just started, but I have been observing her closely and have good reason to hope.  And that’s what all the “chop wood, carry water” is about:  All day long, we chop vegetables and make the foods and juices and mix the medicines necessary for us.  Its intense.  Its gluten-free, dairy-free, soy-free, sugar-free, corn-free, grain-free, night-shade and tomato-free, etc.  Its all-day meal and supplement and vitamin and juice and smoothie preparation.  And then, usually, at some point we go on a short walk.  We enjoy the fresh, cold air.  And Adahlia takes a nap.

It’s a lot.  We have nearly snapped under the strain.  But, just when all seemed lost, something incredible happened:  it shifted.  We have come into a place that is remarkable.  As a family, we are closer than ever.  We are kinder and more honest and more fearless than ever.  More loving and supportive than ever.  Our outlook and perspective has grown and shifted.  We are transforming not only individually but as a unit, together, and its very exciting.  It is attributable to every thing.  We are healing.

We are in a place of flow.

Oh, they just arrived (with chicken feet!)

So I have to go.  But I will first tell you some quick stories:

Adahlia loves the moon.  When she sees it, she points and makes little “bu” sounds to draw my attention.  When I sign “moon” she laughs, excited.

She has started helping out around the house a lot.  She likes to carry the cloth diapers after they come out of the wash back to the living room to fold.  She empties the silverware tray of the dishwasher one item at a time – holding it over her head for me to pluck from her fingertips.  She empties the tea drawer of its boxes and bags of tea, handing them to my while I’m at the counter until its empty and then I hand them all (one-by-one) back to her to put away.  (Ok, that last one isn’t really all that helpful.)

She’s very particular about who she’s handing things to, and if my hands are full and Joe tries to get her to give him the items she’s sorting, she’ll refuse.  She moans and babbles unhappily for me to finish.

When she’s excited, she screeches a high pitch screech like that of an eagle or osprey and stomps her feet in quick succession.  (“Fast feet!  Fast feet!”)  She does this when her dad puts another log on the fire, or when she’s about to be given a piece of watermelon, or about to play with my Angel Cards, which she adores.

In the grocery store, Jim Morrison’s “People are Strange” comes on.  She sits up straighter, on alert, gaining my instant mom-radar attention.  Then she begins to bounce in her seat.  We dance and sing in the aisles until the song is over, because good music is worth stopping for.  In the produce area, she gets excited about the avocado and banana (“bu! bu! bu!”).  I let her out of the cart and hand her an avocado. She carries it faithfully around the store and I lift her up so she can set it on the belt at check-out.

Just about two weeks ago, we went to the Portland Oregon Road Runner’s Club Turkey Trot.  Adahlia was entered into the Tot Trot at the Zoo.  We ran the whole 1/2 mile as a family:  First, she ran along holding our hands and we all shouted “ahhhh!!!!!!” like a battle cry.  Then we took turns carrying her in our arms as we jogged along, and as we ran past the cheering volunteers she waved enthusiastically.  We set her down for the big finish at the end and she ran in with us, holding our hands.

She likes to fall asleep using my bicep as a pillow, tucked into the crook of my arm, my arm curled around her back, my hand resting over her tiny hip and leg.  Sometimes, she will pull at my clothing covering my arm — she wants to rest her head against my bare skin, to feel its warm and listen to its pulse.

She has a fascination and love for belly buttons.  If you ask, she will show you her belly button and then point at yours to see yours, too.

Whenever we start the juicer, she comes running.  She likes to put the celery and carrots in and push them down.  She is so proud of herself when she helps make the “vegetable water”!

She still absolutely loves, loves, loves music and books.  On Saturday, Dec 14th, we are going to Red Yarn‘s Winter Holiday concert and puppet show at the library in the SW hills.  Hooray!  Come if you can make it!!!

Warmest wishes and love to you and yours in this holiday season of Light.  Please keep our family in your positive intentions and prayer as we continue on a path of accelerated healing.  Adahlia will heal from DBA and so will countless other children.  Her story (and mine) will help others who are suffering find hope and ways to restore their lives.

Thank you for sharing this journey with us!

You know how it goes when you’re working a puzzle, or even a crossword. First, you’ve got nothing but pieces. You know they make a picture, you might even know what that picture looks like, but really, all you’ve got is a jumbled mess. But at least you have a plan of attack – say, to do the borders first. So you set about it. You select and sort out the border pieces so you can focus on them. You turn over all your pieces so you can examine them. Perhaps you’ve got an easy puzzle, only 25 big pieces, or perhaps you’re in way over your head at 1,000 tiny fractions of a drawing by MC Escher. If it’s closer to the later, there will come a point when all your powers of close observation seem to fail you. For the life of you, you simply can’t find a piece. Perhaps you can come back to it later but dang it, maybe it’s important. If you’re at all like me, there will come a point when you begin to suspect that such a piece is lost. There will be quick moments of despair, anger, and even perhaps suspicion of tampering with the board. Did “they” even include all the pieces? Did one fall out when I opened the box? Did the dog eat one!?! And suddenly you’re prying open your poor dog’s jaws and peering down his throat.

But then you find it. It was there all along, silly! Or maybe it was hidden under another piece. Maybe it had fallen off the board. Maybe you had to put more of the puzzle together before you could see what was missing. (Or, maybe there it was, riding back and forth on a gyrating dog tongue, getting soggier by the minute! Quick! Reach in and grab it! Flick it out!)

Oh, bliss. Oh relief. Oh joy!

My dear friends, I believe I have found a very important missing puzzle piece. One vital to me and Adahlia. And while I’ve been on this train long enough to know not to prematurely celebrate, my inner self knows a huge battle has been won: a discovery of vital information:

Adahlia and I have had leaky guts. We are intolerant, even allergic, to some or many foods.

Does this explain everything? No. But it does explain the rampant inflammation in our bodies. More important: it’s got a clear path towards healing it, even if it is a bit of a pain.

Of course, I had tried eliminating foods before. And it wasn’t easy: I’ve been a happy, seemingly healthy omnivore since forever. When I stopped eating meat for about 6 years, it was for ethical, not health reasons. When people at NCNM, mindful at potlucks of food sensitivity, would ask if I had any, Id happily reply: “Nope! I eat everything!”

And maybe that was true then. It’s not true now, though.

Starting just 2.5 days after her birth, when Adahlia was first suddenly so irritable and clearly in pain, before we knew anything about her anemia, I stopped eating dairy. (It wasn’t lost on me that her colic or evident pain coincided with my milk coming in. But I was not in the place to be able to change much more than cutting out dairy, which is what the midwives and most folks thought was the culprit.)

It didn’t help.

Since last December (with an occasional relapse), I’ve cut way down and gone several long stretches without refined sugar. But mostly what I tried was to just eat super healthy. More healthy than ever before. Juicing fresh, organic, beets, carrots, celery, and apples daily. Mostly vegetarian. Lots of veges. Clean animal proteins. All natural and organic. Supplements of fish oil were followed by chlorophyll, cherry concentrate, wheatgrass, coq10, and other powerful vitamins and antioxidants.

It wasn’t enough.

I switched from instant to steel cut oats for breakfast. I switched from basmati to brown rice. Everything was laden with the healthiest fruits, nuts, seeds, and veges, from all the health perspectives I know. Eventually, in desperation and about a week before thanksgiving, I cut out dairy as well as pastas, bread, and other obvious sources of gluten.

The pain was less, but still prominent.

Finally, 3 days ago, I decided to do an extreme, very limited, “elimination” diet. I’d been putting it off because of worries about not getting enough to eat while breastfeeding, as well as the attachments we all have for our foods and ways of cooking.

But then I was given a preliminary diagnosis of undetermined (as yet) autoimmune disease, and a good doctor (ND) who has been assisting me said: I’m not surprised, given your symptoms. I am surprised they didn’t test for it earlier.

What he was referring to were the bouts of abdominal swelling, cramping, bloating and gas I would experience whenever I’d do any sort of detox or herbal approach to healing. (The first big detox was back in last December, while taking my first round of Chinese herbs. The Chinese medicine practitioner was the first to tell me I likely had autoimmune disease, glomeronephritis, nearly a year before western biomedicine would tell me the same thing.)

And then, doing some research, I discovered that anytime there is autoimmune disease, you will find a leaky gut.

A “leaky” gut? My first year of medical training came back to me. Of course.

You see, the skin is the border between self and other in the external environment. Internally, it’s your gut. And it’s a war zone in there. Only certain things, like nutrients, are allowed passage into the body. Toxic waste and bacteria, etc, are not allowed to pass through an elaborate, tight, semi-permeable wall, much like the skin.

Unless, of course, it’s been compromised. Then, everything can come flooding in. The body’s defensive guys go to town with killing and cleaning up and eliminating. They secrete signals and markers to tell the body to inflame the area, to make more warriors, who carry special poisons to destroy the invaders, and they spread the word: Watch out for these guys, they look like this!! They aren’t supposed to be in the blood!! And even important nutrients that have leaked through, which haven’t been properly transported or fully digested, get tagged for destruction because they aren’t in the proper format, they haven’t been properly digested first.

I thought of how Adahlia isn’t absorbing her nutrients, despite my healthy diet…

Leaky gut.

And these warrior cells are outnumbered by all the stuff leaking through. More and more of it, every day. And they start to panic. And they just start releasing their chemicals everywhere, which of course starts destroying healthy tissue too, and then they mistakenly identify healthy tissue as dangerous, needing to be destroyed, and they can’t tell the difference between self and other anymore, and bammo: you have an auto-immune disease.

And another friend and health practitioner, upon hearing I have autoimmunity, said: Sounds like your whole system has been “down” for some time.

Down? Doesn’t she mean too revved up? My defensive, disease-fighting cells are attacking my own body!

And then I thought about how both Adahlia and I both have low white blood cell counts.

And how western, biomedicine, treats autoimmune disease with steroids.

And I remembered how the immune system warriors just start fighting everything when they get outnumbered and I realized: Holy smokes, my system is down.

And then Thanksgiving happened, and I put a hold on my no-gluten, no-dairy diet and ate a bit of everything.

That night was the most painful I’d had in awhile. So bad, I couldn’t sleep.

I realized I had something here. So the very next day, I went on a very limited diet. More than just dairy and gluten free (which was a very big deal itself for a cheese loving, soft-serve craving, bread and pasta eater!)

No gluten, (no grains of any kind, in fact, including rice or quinoa), no dairy, no eggs, no soy, no corn, no tomato, no sugar, and the list goes on…

Certainly nothing store bought.

Of course, I would have no idea what to cook as far as a meal goes if I hadn’t found an autoimmune elimination/detox menu online. (Search and you’ll find it too.)

The idea is to eat very, very simply of foods that typically don’t aggregate the system. No store bought sauces. Do it for long enough to get things to calm down. Then, the body will begin repairing and replacing cells. You start adding foods back in one at a time. If you have a reaction of bloating, gas, and abdominal pain, you stop. You’re not ready to eat that food yet. You may never be.

Of course, the question is: which foods, exactly, are making my body freak out? Because let’s say I just happen to be sensitive to sunflower seeds. Well, there sunflower seeds in this detox menu. Or maybe I’m not sensitive to carrots. That’s good to know, because carrots aren’t allowed on this detox menu, and I definitely want to be eating them if they are allowed, because they are so healthy and good for us.

Luckily, an easy answer to that question can be found in food sensitivity testing, which is just a simple blood test.

So tomorrow, a dear friend and talented naturopath, Dr Z, at Natura Integrative Medicine, is doing this testing for Adahlia and I both. She is also doing a hair analysis on Adahlua, to check for heavy metal and other toxicity.

(Note: because I know the value of the antioxidants and nutrients in fresh juicing, I am still juicing beets and carrots, even though I’m not “supposed to” according to this particular elimination plan. If I find out I am reactive to them, I will stop. But at this point, with Adahlia’s extreme vitamin A and blood deficiency, I don’t wish to. Fresh juicing is like a big burly bouncer: it escorts free radicals right out of the body. It’s very important if the body is seriously inflamed.)

Though I do have some pain as I type this, I must say that my daily pain in my kidneys has lessened considerably since embracing this elimination diet. I am very excited. My inner guide, the one that was in turmoil despite all the progress with the herbs, acupuncture, surgery, homeopathy, qigong, and reiki, because it kept feeling that we were still “missing something important” has quieted.

We have just identified an area of a huge, potential missing puzzle piece.

Now we just have to find the smaller pieces, the exact ones that comprise it, and a big part of the board will be solved. The rest of the puzzle will fall into place.

The destructive process will stop, and then the other therapies, so good at cleansing debris and restoring healthy tissue, will be able to do their work, now that they are no longer undermined.

My body will heal. So will Adahlia’s.

Just watch.

I just woke up from a rather illuminating dream. For those if you gifted in interpretation, some parts are obvious. If you have insight that could help, please let me know:

Amphitheater. Ghosts everywhere, bad vibes. I keep accountability of my family and set up a buddy system for the children and even adults so none get led away by ghosts. Ghosts then seem ok with sharing space: there is an opera singer who floats by singing at the top of her lungs and is ok with a live opera singer performing her song, as long she doesn’t try to hit the high note and leaves that in homage to her. Other ghosts are spectators. They are everywhere, but my buddy system works. The atmosphere is no longer ominous.

Then two young boy ghosts, brothers, try to take me to door to a dusty storage area. I assume it is where they were killed; the amphitheater stage is only a small part of a vast and daunting network of rooms and passages. They tug on my arms but I resist because its real bad energy in there. I am very afraid. I get the idea that their dad, or whoever killed them, is in there and would be pissed by my entry.

Now outside, a healer NCNM friend plants two green shoots for the boys. I’m not sure what the plants are, but I might recognize them if I saw a picture. She tells me they were killed by a little girl they loved: she took them to a basement, exposed them to a poison to see if they loved her. The poison leaked out of the bag in a purple haze; she had suspended the bag above them. She did it first to one boy, and then to the other. The second boy knew she had killed his brother but went anyway. Out of love? Or childlike obedience and ignorance?

I start to follow my friend and she enters a subterranean parking lot. Dead, bleeding people, or ghosts, are suddenly everywhere, coming up to me. She doesn’t see them. The atmosphere again has turned ominous and I am scared. Purple haze is filling the air. I turn and run; my friend is left behind and when I look back she is struggling with the haze but is still trying to follow me out. I escape by climbing up a sewer drain and am outside.

A nonchalant blue collar man walks over, chatting about poison needing to get out, hits a release valve, and it’s like a fire hydrant shooting purple water into the sky. Some gooey drips are falling and I cover my mouth; some poison gets in/on me and I’m worried, but I’m ok.

I awake.

Subterranean parking lot and storage areas: the subconscious. Areas unused, unexplored. The amphitheater stage is real life: only a small part of reality, but where things are literally “acted” out in the “real” world.

Sewer subterranean: kidneys.

My family, NCNM friend, blue collar worker: aspects of myself.

An obvious need to purge a poison or perceived poison … Question is how to do it. Dream suggests I am overthinking it.

Dead, bleeding people underground: my kidney cells? Or, simply more “ghosts”?

The ghosts: beings from other dimensions. Some are perceived as helpful or at least innocuous, others seem dangerous. They share our reality (stage) and also move freely into places we cannot or do not go. Whether or not we are supposed to, or should, is another question. Obviously, the “ghosts” wanted me to go. My NCNM friend tried to lead me there too. My instinct, or fear, said otherwise. Wise choice? Hard to say. What is interesting is that when I refused to enter the dusty, offstage storage area, whatever directs dreams simply gave me another metaphor for the subconscious: the subterranean. Something is certainly trying to get me to go into scary places.

(Note: I’ve gone into “scary” places before in dreams… They are often portals to places where you learn things. Then again, sometimes, they simply lead to a nightmare. Typically, I have to have a real strong motivation to go into someplace that feels ominous. (Once, a little boy ghost told me that a woman who took me into a scary place could help me with Adahlia, so I went, but I couldn’t solve her riddle.) I also once really pissed off a benevolent ghost by refusing to go into the basement where he/she was simply sitting in a rocking chair, knitting. It was as non-threatening as possible, since it was my childhood basement, which is a finished basement, and it was only that one “ghost.” I think I was supposed to go down there to learn from that entity. But I was scared of the unknown: what would this ghost look like? What if she/he got mean? When I shut the door instead of going down the stairs, he/she threw it open and howled at me like the wind for being such a chicken. I couldn’t see the “ghost” because Id been knocked to the floor; I felt more scolded than scared. Since then, I’ve engaged more with talking with “ghosts.” But I do hate it when the atmosphere gets all freaky.)

A purple poison? Interesting. Purple is the color of wisdom, of psychic ability, of the third eye chakra, and second only to the purity of gold and white. Purple is a high color. Very odd that it would be poisonous… Am I not utilizing something properly and perhaps it has turned poisonous? What needs released?

Other ideas?

… Is that my kidney function has continued to improve. Despite the discovery of anti-nuclear antibodies, my eGFR was up to 72, and my creatinine 0.9, as of yesterday. I can only attribute it to the intensive diet and herbal and qigong and acupuncture and reiki regime. Add in the countless prayers and healing intentions and energy we are receiving from family, friends, healers, strangers, and others, and you have a powerful recipe for healing.

The downside to our necessary therapies? I can tell that the herbs decrease my milk supply. It had gotten so low, and Adahlia so frustrated, that I took the whole day off yesterday from herbal therapy. And last night, the deep pain crept back in, and my kidneys ache now. So I will have to restart them.

What a balancing act!

It’s okay.

We can do this.

It’s just a little tricky, but we can do this.

I will do it for me, and dang it of we aren’t going to heal Adahlia, too, I don’t care how impossible it supposedly is. I don’t care how many of her doctors stop talking to me because they find my quest to restore her health insulting, and how many others look at me patronizingly or pityingly. It’s possible. The body is made to heal itself.

It baffles me how so many conventional physicians don’t see that an integrative approach is not meant to threaten them. It includes them. Working together means synergistic results. It’s a good thing.

It’s so interesting to me how I’ve had to incorporate so many modalities, so many approaches, because one by itself isn’t enough. And that makes sense to me, because eating healthy isn’t just about eating spinach. You’ve got to eat the right proteins, carbs, fats, vitamins, and minerals – and one food, or set of foods, just isn’t going to make that happen. Likewise, exercising healthily is a lot more than just running, or just strength training, or just flexibility. And spiritual health is more than just the obligatory check-in at a church.

My medical doctors, the ones who have been so anti-Chinese herbal therapy, so vocal that “we have the answers!” and so sure that the only thing wrong was an obstruction, despite my non-correlating symptoms, so dismissive of my experience of my body, so against the naturopathic doctors and Chinese medicine practitioners that they actually called them “charlatans”, must be flabbergasted, and are most likely, quite upset, and maybe even a little embarrassed.

The doctors of the established medical paradigm would benefit greatly from listening to their patients more, and opening up to the idea of preventative and integrative medicine. More important: their patients would benefit!

It is time to demand a change for ourselves and our loved ones.

Yesterday, Adahlia had her 20th blood transfusion. Just like last time, she was strong, observant, patient, and friendly. For the first time, she was able to walk around the transfusion center, which delighted the nurses, who spoke of how big she’s gotten, how they’ve seen her change over time, her being a regular fixture at the hospital and all. Adahlia received her first temporary tattoo on the back of the hand that didn’t have the IV – a ladybug (she loves bugs, points to them and says: “bah, bah” or “beh beh”). She tried several times to sneak behind the nurses station. She eagerly pulled me towards the play area. And it was another lucky transfusion in that she slept for a big chunk of it.

She also had a baseline hearing exam done, because we need to start her on iron chelation medication. (We need to monitor her vision and hearing, because the medication can cause damage to those senses, so we must be as must be as careful as possible.). She needs chelation. Her ferretin is at 650, her serum iron is at 176, and her % saturation of iron is 95%. Time to move.

The hearing exam was fun for all of us – it’s late at night, I need to rest, so I won’t go into it here. But it was interesting to see how they measure hearing in babies and toddlers, and actually pretty enjoyable.

So I recently got a new general practitioner, who immediately agreed to do autoimmune testing, after months of my urologist and nephrologist refusing, insisting: “you don’t have autoimmune disease. ”

Guess who has autoimmune disease?

This is one of those situations where you don’t actually want to be right. Do you know how maddening it is to have to insist on receiving testing for a disease you don’t even want to have? Oy vey.

So, I have been attacking my kidneys.

Ok, that’s news in a way, because it’s been confirmed by biomedicine, but it’s something we’ve suspected from the alternative and energy medicine side of the house for nearly a year now.

Focus:

What do I need to do to heal myself?

Rest, get deep sleep at night. (Sigh. Its been impossible to date. It is difficult, if not impossible, to get any quality sleep sharing a bed with Adahlia, especially when she is sick and tosses and turns all night. But how can I kick her out? As long as she’s breastfeeding, which she still does heavily, I doubt she’d go willingly. Considering how she practically sleeps on top of me, I doubt shed even be okay on a bed of her own, set up in the same room. And I do feel it helps her feel safe and loved, and is therefore helping her do better. At any rate, let’s get real here: bed sharing is not the root problem. Deeper, more restorative sleep is. I need to figure out how to get it, even though I have a baby.)

Reduce stress. (Ok , big root problem. A loss of nearly all my earnings and savings from my military service has had a huge impact on me. Going into debt to keep a stable roof and healthy food and bills paid has been very disheartening. It will be hard to climb out of this, and I know it. Especially if I am seriously ill, and can’t work. I feel derailed. It’s amazing how fast thousands of dollars of savings goes. And with it, your life. Money is energy, after all. It needs to flow, both ways. Mine had simply been depleted. And obviously, there’s Adahlia, and the stress of her blood disorder, which I need not elaborate on. If you’ve ever loved anything, you know its very hard to see it seriously sick. Even Joe and I’s relationship, which has been so special to me, is often yet another source of big stress. No easy fixes to any of the above. The stress exists. I will just have to figure out better ways to cope with it, or otherwise embrace an even greater zen outlook, an even deeper trust.)

Eliminate allergens in the diet: starting with gluten, dairy, soy, and corn. Get heavy metal testing. (We’ve eaten mostly organic, healthy fare for awhile now, but to go wheat and dairy, etc, free will be a challenge. I’ve even read that I should eliminate all animal protein. As a breastfeeding woman, I know that is not going to be easy… I’m always hungry as it is!!!)

Positive thinking, meditation, exercise, reiki, qigong, acupuncture, high quality herbs and supplements, and all the other healing techniques I know are also vital. (Most also require time and/or money.)

Sometimes, it’s just so overwhelming. I need an army of me to take care of me.

The point, however, is that though I thought we were already doing everything we could, we obviously aren’t, and I need to ante up. I need to commit further. Our lives depend on it.

And I need to keep breathing through all these stressors, reminding myself that I love myself and my life, that I am already everything I need to be. No matter what the external circumstance. No matter what it looks like, or appears to be, to the judgmental or arrogant or ignorant eye.

When I was little, I had a habit of losing things, like watches, or trinkets, and I got in lots of trouble for it. I simply could not keep track of stuff. I fretted over it, was scolded for it; but nothing really helped. I grew older, and gradually, as the years passed, I lost things less often. But I still, to this day, misplace and lose items, and very occasionally they are important or valuable, but usually they aren’t. It’s simply a quirk about me. I cannot express the relief I felt when I finally escaped the observant eye, and finally didn’t have someone hounding and criticizing me about it, when I did misplace an item.

Except I cannot escape my own eye, and it’s quite observant, indeed.

Hey, Erika: It’s okay to lose things.

Hey, Erika: It is just ebb and flow.

It is time to deeply love myself. To take the best possible care I can of myself and my baby. Time to ante up. Time to get fierce about it.

At all cost.

The other day, as Adahlia strode into the kitchen in her moccasin slippers, I realized I was hearing “the putter-patter of little feet” and grinned. Not only is that particular sound amazingly cute, but with everything Adahlia has been through, it is nothing short of a miracle to hear her walking.

I am. So. Grateful.

I started writing this post on 11.11.13. Things have been busy; I’ve been exhausted. So by the time you get to the bottom of this post, you will realize that it’s nearly time for Adahlia to get her blood checked to see if she needs a transfusion. But first, news:

Very happy to announce that Adahlia is a bonafide free-walker, no longer needing to hold onto a wall or sofa for support! A couple days ago, we went to the playground and she walked, instead of having to be carried, from swing to see-saw to jungle gym.  Hooray, little one!

She now loves following me everywhere I go… and I admit, I love it, too.  All around the house, all day long, we walk around together. I don’t even mind when she follows me to the bathroom. And if we aren’t where she wants to be, she takes me everywhere she goes.  For example, earlier today I was in the bedroom, but she wants me to come into the kitchen with her. She enters the room and stands in the doorway holding the doorframe, like a grown-up waiting for permission to enter.  I look up:  she waves.  I wave back and say, “hi.” When I smile she grins. She toddles over, leans up, mouth open for a kiss, and I kiss her, pull her on to the bed for a cuddle.  She then grabs my index finger, turns around, and pulling my arm above her head begins to walk away. 

For exercise, or fun, or both, she walks me around and around the couch. I hold both her hands and lift to give her a boost up the stairs… Her little leg isn’t quite strong enough to push herself up the step.

We go on walks to the nearby nature park. The trail is paved and flat, and there are off-shoot trails of packed dirt and pine needles. She holds my finger as we walk. Sometimes, she walks alone. Sometimes, she rides the stroller. While standing alone a little boy comes running over, chased by his older brother, they are perhaps 6 and 8 years old. Their grandparents follow behind them. The littler boy is making a bee-line for Adahlia, his face lit up in excitement.

“Careful!” I call, as we near imminent collision. “She’s a new walker… Not so sturdy….” I have managed to restrain myself from reaching out to her but I can hear the nervousness in my voice.

She stands. Fearless. Watching. Waiting.

And as he nears, his face beaming in something like mischief and joy, he opens his arms and wraps her in a big bear hug, nearly lifting her off the ground. Then he dashes off, and I lunge forward in time to steady her. Beautiful.

There are some areas of the trail over wetland, or marsh, and the planks are slippery from rain. She slips and slides, holding onto my finger. “Whoaaa! Whooooaaaaa!” I say. She laughs and slips more, and laughs more.

We are at the edge of the park and we hear the sound of the railway crossing. “Look,” I say. “Train.” The light rail zooms by and Adahlia grins. Later, the railway chimes again but I’m lost in thought, or my own observations of nature. Adahlia tugs my hand and pulls. For a second I’m confused. Then I get it. “Oh! You’re right – train!” I say. And I lift her up do she can watch it race past.

On our return to the car, we pass an educational post featuring the photo of a rough skinned newt looking straight into the camera. Adahlia is in the stroller but as I show her the newt photo she lights up, and makes as if to try to sit up and get out. I know what she wants.

“You love him?” I ask. “You want to kiss him?” She smiles broader, eager eyes fixed on the newt, his orange underbelly shining, his eyes iridescent like black pearls.

I lift her up and towards the picture. She kisses it.

And then, as we are passing some oak trees, she again tries to get out of the stroller. This time, I don’t know what she wants. I lift her out and she walks off the path and plops down between the trees, on a deep pile of damp leaves. I crouch next to her as she contentedly examines and sorts the leaves, handing me twigs. We find something that looks like a shell of a nut, but is not. She leans back and then falls back, laying in the leaves, and I laugh. She tries to sit up, but I tell her its okay, so she lays back down and watches the branches move in the wind against the grey sky.

On our way to the car, in the parking lot, she is walking again, holding my finger and I push the stroller with my other hand. Suddenly she stops and squats down, examining the pavement. She is at the edge of a white line marking the crosswalk. She had never stepped on painted pavement before.

Recently, I found a bag of lavender in the back of our bathroom cupboards, either gifted from a friend moving out of town or saved from the free-box at NCNM, and we’ve begun taking baths in it.  It’s lovely, and I feel it calms us both.  I hold the bag open and she grabs a couple baby fistfuls and throws it in.  Its a wonderful way to prepare to go to sleep.

With the windy, blustery days and evenings, we’ve started lighting fires in our living room.  Adahlia comes running when she hears her dad open the stove to make a fire (even if I’ve already got her tucked in bed and she is about to fall asleep… sigh.)

She points to the fire and signs “water” — and I show her the sign for “fire.”  But I also tell her she’s right:  Fire is like water.  They are the same, but opposite, and they control each other.  They are both life-giving and life-taking.  They are gifts, and neither good nor bad, but worthy of respect.  Like many things in this world.

Adahlia helps me with the fire by removing the sticks of kindling one at a time from their bag and handing them to me. “Hot,” I tell her, regarding the stove. “No touch. Don’t touch.” But I know that like all of us, she will eventually learn the phenomenal power and pain of “hot” for herself through first-hand experience.

…. Just not today.

Adahlia loves helping.  She helps empty the dishwasher – meticulously handing me one spoon or fork at a time, holding it up and behind her, waiting for me to take it from her but not looking at me, her eyes still on all the silverware to be removed.  She also “washes” surfaces with a piece of cloth or tissue paper.  She likes to “help” with sorting clothes when I’m folding them, too.  And when we rake leaves, she helps by putting one leaf in the bag at a time… and then clapping. 

Sometimes, if we aren’t reading a book to her, Adahlia will read a book to herself.  She points at the pictures (the same things we point to, to draw her attention towards things happening in conjunction with the words we speak) and babbles in baby speak, “dah-dah-da-dah-dah…. bu-bu-bu.”. She flips the pages one by one, very purposefully. 

Currently, Adahlia’s only true words are “baby,” “dada”, “mama” (or “me-me”), and “ba-ba-ba” … which very clearly means banana, as it is said with great enthusiasm, gesticulation, and pulling at me, while passing the banana display in the grocery store.  (She wont eat bananas though.  Very finicky eater.  It’s tough.  Very tough, trying to feed her.)

Adahlia enjoys drinking the smoothies I blend for us in the afternoon, as well as the fresh carrot, beet, celery, and apple juice I make fresh every morning.  She is almost painfully adorable sipping our shared glass of juice through a straw – her hair pulled back, in an oversized sweatshirt. With her big eyes and pursed lips, its something from a more innocent era, like a 50s girl in a poodle skirt at a ice cream shoppe.

I’m very happy to say that her skin, which was getting very rough, like sandpaper, and was almost looking like eczema in spots, is entirely cleared up and is baby-smooth again.  I think it might have been due to the bubble bath we were using… It wasn’t anything special for babies, just something I’d been given as a gift for myself. But over the month we used it, I noticed she was getting a couple strange rough spots on her upper arms, about the size of a dime, and her skin began to get sand-papery, first starting along her sides and then spreading to her chest and back. It wasn’t red like a rash, but it was definitely like sand-paper to the touch. So, I traded my bubble bath in for some organic baby bubble bath (about time, really, considering how fastidious I have been with all her other organic products). I also began applying olive oil to her skin again – we weren’t really doing anything this summer, and then I was applying coconut oil for awhile, but really, her skin responds best to olive oil.  Its beautiful, really. Must be her Mediterranean blood. Honestly, I don’t know why people waste the money on lotion.

Speaking of ethnicity, Adahlia’s new favorite food these days is pasta – in any form. LOVES it. And a big chunk of crusty bread?  THRILLED.  Not the healthiest of fare, perhaps, but we take what we can get. (And she is eating other food, too.) Ever observant, Adahlia also now enjoys blowing on food to cool it off before she eats it. Last night, with her hitched up on my hip, I spooned out some Israeli couscous from the stove pot and let her taste test from the spoon. “Whheeew!” she blew, and we took turns blowing on it. Adorable.

Other cute things? Adahlia has decided to mooch my wardrobe. She likes to put on my shoes – she will wear them on her hands and walk around, or slide her feet into them and wave them around. She takes my scarf and wraps it around her. My head wrap goes around her neck and off and on again several times. She puts on my fingerless gloves and wears them while reading or playing with her wooden barn animal set.

She also picks out her own outfits now. I hold up a couple shirts and she selects them. I show her all of her pants, and she points to the ones she wants with a big smile. Her favorites? A pair of brown leggings with white polka dots and a lime-green shirt from Portland’s Japanese garden with an alphabet of bugs on the front and back. She has other outfits that she really likes, but that’s definitely amongst her favorites. She also picks out the necklace she wants to wear for the day, and her pajamas.

Its 11.18 tonight, and she looks really good right now, I think, for just about 4 weeks out from her last transfusion. Though it’s hard to say. This past month has been rough on her… on all of us. She got sick the day after her last transfusion and has been sick pretty much this whole month. It seemed to ease up last week, but just as it started to clear she caught something else. We’ve had a series of nights with very little sleep, as she can’t breathe thru her nose very well, and she’s not a mouth breather. It’s been about a week of very deep coughing and really icky, icky stuff coming out of her poor nose. She’s also cut her molars… A tough time, but at least now the worst of teething is behind us! With all the illness, I thought she looked pretty pale, pretty bad, for awhile. But now she’s coming out of it again, and I think she looks pretty good. Pretty good for four weeks. Dang good for having been sick this past month. It’ll be interesting to see what her numbers say.

I’m also doing better. A follow up test if my kidney function showed my creatinine and eGFR were improved. The nephrologist, of course, said we can’t read anything into it, that we need to see the trend over time. Apparently, I am showing some proteins in my urine, which indicates there’s some glomerular damage. But I feel ok about it. The pain is not nearly so bad. I am healing – albeit slowly- from this strange ordeal. Adahlia is too. Maybe it’s too soon to call it, but I think it will be one of those things where we will look back and say, “Oh yeah, that makes total sense, we really turned that around towards health! Thank goodness for integrative medicine!”

Truth is that our eyes are kind of in a misleading place. We just can’t see anything looking forward. It’s when we look back that we see how it all aligns. It’s when it’s the Fall, and we are looking back on our year, our toughest years, and we are so grateful, the most grateful, for them.