If you’ve ever climbed the steps to an ancient temple, you may have tried, at least for awhile, to count them.  If you’ve ever tried to climb a mountain, you may have looked up and thought with relief: perhaps only an hour more! and then, hours later, found yourself still climbing.  Supposedly, once you earn so many million or billion dollars a year, additional earnings stop having any meaning, because your quality of life can’t improve further.  And if you’re over the age of 25, it may start to strike you that the all-important-birthday just isn’t that important anymore.

Not that the numbers don’t have meaning.  They do.  Of course they do.

But at a certain point, numbers don’t really matter.

It becomes all about the experience.

I’ve lost track of Adahlia’s transfusions.  We might be around 28, or 33, but its somewhere close to 30.  It’s a hideous number, of course.  In fact, its a dangerous number, because it makes blood transfusions seem almost normal, and they are anything but normal.  A successful and safe blood transfusion is, in fact, one of the more recent and advanced procedures of our modern medical era.

But the numbers don’t really matter.  She’s had a lot of them.  That’s what matters.

She went 5 weeks between transfusions again, and that’s wonderful.  Her iron stores seem to be dropping again, which is wonderful.  She isn’t making baby red bloods cells anymore, which is not as wonderful. Her doctor told me that she didn’t want to continue measuring Adahlia’s reticulocytes anymore, because Adahlia wasn’t making them, and wouldn’t make them.  The doctor said, “It doesn’t tell me anything to continue to track them.”  When I countered that Adahlia made a normal amount of reticulocytes last month, the doctor dismissed my words and said Adahlia’s reticulocyte count wouldn’t go any higher than that, because “we aren’t doing anything to stimulate the bone marrow.”

What she meant was:  there’s no point in looking for improvement, because we aren’t doing steroids.

The look on my face must have communicated something, because she then said, “of course, if you want to continue doing the counts, then we can.”

Again, I said nothing, but when we arrive for our next transfusion next month, you can be sure I will make sure that the doctor has ordered a reticulocyte count.

Numbers matter when you’re trying to track improvement.

And while I’m not doing what the hematologists would do to increase her reticulocyte counts, it doesn’t mean I’m doing nothing.

It gets mildly aggravating, having various doctors continually push a medicine on me for my child that I don’t want to do because it has permanent, life-altering, side effects.  But, like in climbing a mountain, when the storm unexpectedly rolls in, I’ve learned to wait for it to pass.   I’ve learned that it doesn’t help to throw my walking stick at the thunder clouds.

It does help to be prepared to deal with the storm, though, and that means I have to pack the necessary mental equipment.   Just because its rainy and the wind is blowing, doesn’t mean I need to get wet and cold.  Over time, I’ve become very adapt at handling various doctor storms.  I have more than a few good storm stories.

Like perhaps any mountain climber, I’d prefer the day to be sunny and temperate.  I’d prefer there to be no storms.  Yet, storms are a part of life, especially near mountain tops.  Perhaps someday, I’ll learn to enjoy them.

Last night, before dinner, I gave thanks for the next 3-5 weeks of life that Adahlia’s transfusion purchased for us.  We live in 3-5 week increments.  Because while no child’s life is guaranteed, Adahlia’s life literally runs out when her transfused blood runs out.  Two nights before the transfusion, I cried next to her as she slept.  30 miles from the hospital, for the first time ever, Adahlia resisted where we were going.  In the rear-view mirror, she told me: “No doctor.  No hurt.  Home.  Home!”

Of course numbers are important.

Especially certain numbers.  Over so many thousand feet, you’d better pack gear for camping, because you can’t climb that mountain in a day.  If your creatinine rises past 1.1, why, my friend, you are in kidney failure.  Better do something about that.

In addition to her ferretin dropping and iron overload decreasing, the numbers say that Adahlia’s liver and kidney function is improving.  In fact, both her liver and kidney function are near normal!  In addition, she remains above the 50th percentile in both weight and length and weight-for-length.  This means that the nutritional and supplemental alternative medicine we are doing for her is probably helping.  It is, at the very least, not hurting.

Let’s talk more numbers.

In July of this year, I had a nuclear medicine kidney function test and it said that I only had 10% function remaining in my right kidney.  The doctor said it wasn’t worth saving, and that they should remove it.

Last week, about 5 months after that test, I had the test repeated.  The report came back that my right kidney was functioning at 19%, and the doctor called me to say that they would schedule the surgery to save it.

Folks, you may not know anything about kidney function.  But let me tell you what is medically accepted about it:  Once you lose it, you don’t regain it.  Certain supplements might keep it from getting worse.  But they won’t help you regain what you lost.

WRONG!

It IS possible to regain kidney function.  I just did it.

And, what’s more, is that I intend to keep doing it.  I must admit something here:  I am a rather terrible patient.  I find it incredibly boring to take vitamins, supplements, herbs, etc.  I truly dislike having to give myself acupuncture and other medical treatments — not because they are unpleasant, but because there are always 20 other things that I’d rather be doing.  It gets old being sick, being tired, being weak.  It gets annoying having to be super diligent about medical routines necessary to bring about health.  There’s no doubt about it:  Being chronically ill is a drag.

So, with all this moving to a new state and other demands, I must confess that I haven’t been as consistent as I could have been.  When it comes to electro-acupuncture, I could do more of it, on a more regular schedule.  I can increase my dosage of certain supplements to the maximum recommended dosage and never EVER miss a dose.

The bothersome thing about having to save oneself or a loved one from a chronic (or terminal) condition, is that one must be a perfectionist about it.

The numbers give me hope.  Yet, I must admit, I was hoping for better.  What these numbers tell me is that I must not only continue what I’m doing, but do MORE, and do it more CONSISTENTLY, in order to have the best outcome for myself and for Adahlia — a successful surgery to save my kidney, and a cure for Adahlia’s bone marrow failure.

I’ve had 4 surgical procedures to try to keep my right kidney draining properly since May of 2013.  The last one was on August 1, 2014.  Because of how the numbers play out, my doctor doesn’t feel comfortable letting me keep the current stent until they can schedule the surgery to fix my kidney in February.  It would be over 6 months — and its recommended only to keep a stent in place for 3-4 months.  So I will have to do another stent replacement surgery before February.  (This makes it my fifth.) The fact that I was able to resuscitate my kidney enough to get them to save it makes me happy, but the fact that I now must have two more procedures, not one, does not thrill me.  I know more than the lay person about all the harm that anesthesia, antibiotics, and foreign objects inserted into the body do to the body’s health and vital force.  Every procedure puts me back many paces.  I can now expect to be climbing this mountain to recovery for at least another year.

But, it must be done.  So, I am having a less-invasive surgery to switch out this stent with a new one on December 22, and then the “big” surgery to repair my kidney’s drainage issue a couple months later.   It is amazing to me that I am still dealing with something that first had me moaning back in April 2012, when I was 7 months pregnant with Adahlia.   There have been meadows and cliffs.  There have been storms and sunrises.   I can only describe it as “one hell of a mountain.”

And I did not know it when I first began to climb — I thought it was only a bump. Even so, I somehow, miraculously, had all the tools I needed to climb it, and whatever I didn’t have but needed, I am finding along the way.  It is nothing sort of amazing.

Old explorers coming upon — and then crossing — the Rockies must have felt the same.

Of course, on a larger scale, isn’t it true of life in general?  We are born with all we need for our lives, our personal mountain.  And everything we don’t have but need, we will find along the way.

As a fan of symbolism, I’d also like to say that I am excited by the fact that my next surgery will happen on the winter solstice, the return of the light. After all, the right kidney is considered Ming Men, Gate of Life, and it holds the Yang life force of the body.

I have every intention of building the light and power (function) of my right kidney between now and February, when the surgery will happen to fix whatever is occluding the kidney’s flow.  The stronger my right kidney is functioning, the better chance we have of the surgery being a success.

And there is also one other esoteric hope:  when I was pregnant with Adahlia and my right kidney failed, the chinese medicine pulse on my wrist that was connected to Adahlia dropped out and was barely palpable.  It was so strong up to that point.  My heart sank when it sank, but nothing my expert acupuncturist did (a specialist in pregnancy) or advised me to do (such as drinking herbal strengthening broths and soups) raised it.  In many spiritual and esoteric traditions, especially according to Rudolph Steiner, the child’s energy and health is closely tied to its mother’s energy and health during the first years of life.  Gradually, the child develops a more independent energy field.  There is a hope, though it may seem far-fetched, that if my right kidney function is restored, and the occlusion is cleared so that the energy and fluid can flow again from it, the Gate of Life in Chinese medicine, then Adahlia’s energy pattern will be healed too, and her own Gate of Life will flow, and she will recover on her own.

At any rate, my friends, those are the numbers.  Meaningful and meaningless, carriers of dismay and hope, at once both intimidating and motivating.

They are powerful because of their meaning.

They are meaningless because they hold no power.

We do.

In every.

Little.

Step.

Thanksgiving always generates a spirit of gratitude.  After all, that’s the point.  Gratitude for the shelter and food we have that will sustain us through winter.  Gratitude for the friends we love who may have (literally) saved our lives.  Gratitude for our own lives.  And, if we are spiritually inclined, gratitude for chance to take this journey, and for the entire complex web into which we are a tiny, yet important, woven thread.

I just laid Adahlia down for a nap.  She still naps these days (most days) — and I’m thankful for that, too.  She still often likes to breastfeed before falling asleep.  She’s getting towards the end of the life of her transfused blood, and so she doesn’t eat much.  She wouldn’t even mashed potatoes last night, or the leftovers this afternoon.  We try everything to cajole her to eat, but she just doesn’t eat when she gets low in blood.  So even though she’s almost 2.5, and I don’t exactly have a huge milk supply, I’m grateful that we managed to keep my supply alive through those very difficult months, so that she could be a breastmilk baby, and can at least have mama’s milk when she’s not getting much nutrition elsewhere.  I’m grateful when she’s lying there in the crook of my arm, after just having fallen asleep, and she nuzzles in close to me.  It’s very sweet.  It’s very kitten-like.  It’s very animal.

I once saw a bumper sticker (in Portland, of course) that said:  “What if we are spritual beings having a physical experience?”

We so often think of it the other way around.  So many of us try to find that elusive confirmation of meaning of life, of a God, of purpose to existence.  So many want to experience a true spiritual experience, to feel the bliss of enlightenment, if only for a day, or hours, or few minutes.  Yet, what is so bad about being animal?  What if that bumper sticker is exactly the case?  And why couldn’t this world be some sort of pilgrimage?

What does it take to be a pilgrim?  Well, if you’ve ever played Oregon Trail, healthy gut flora will help, because an awful lot of folks manage to ford the river but still die of dysentery.

But what it really takes it courage.  Pluck.  Grit.  Fearlessness.  Audacity.

Call it what you may.  Whatever you call it, it takes a lot of courage to try something new.  To be a pilgrim.  To break away from what the rest of the people are doing and say: “Do what you want.  I’m going into this new, and perhaps uncharted, experience.”

What else does it take to be a pilgrim?  Creativity.

And a willingness to be wrong.

Adahlia and I are pilgrims on the journey to find a way to resolve her anemia without the use of steroids.  And I have no idea if it will work.  By all accounts of those who have come before me, who have not necessarily cured red cell aplasia but have resolved and reversed symptoms and signs of MS, cancer, or Lyme disease, a natural medicine cure is a long and arduous road.  The body needs re-educated into a new pattern of homeostasis.  It needs to rediscover its old state of health.   That’s difficult in itself.  It takes 2-3 years, or longer, in some cases.  And in the case of a child who was born with an unhealthy pattern incapable of sustaining life, it takes even longer.  Because that body never knew health.  It never experienced health.  It needs to figure out what health looks like.

Adahlia went another 5 weeks between transfusions, which is fabulous.  Honestly, though I’ve said it before, I don’t know how parents handle going 2-3 weeks between transfusions.  Its terrible.  It eats you apart from the inside.  If that was our routine, I’d be insane by now.

I’m grateful it was five weeks.

Moreover, we had additional good news:  For the first time in months, she was retic-ing.  She was making her own red blood cells.  It was in the low-mid normal range.  For the past several transfusions, she had so few baby red blood cells that they were determined to be “not measurable.”  So, this is excellent news.

Her iron levels (as measured by Ferretin) have not, however, gone down.  They have plateaued at around 800 (currently 750+).  The other night, she woke several times with stomach pains.  Probably the Exjade medicine (iron chelator).

On Monday, she will be 4 weeks since her last transfusion.  The child is pale.  She is moody and more violent than usual.  This leads me to believe that she may need a transfusion.  Yet, she sleeps soundly.  And when she is nearing transfusion, she typically wakes often.  So perhaps she will go 5 again.  Its hard to say.

We went to Portland shortly after our last transfusion to test her homeopathic spagyric and chinese medicine.  She still needs probiotics and AFA blue-green algae.  She still needs the medicine to counter acid-base imbalance (she tends towards acidity, which is not life-supportive.  The body MUST be alkaline to be healthy).   And she still needs the medicine to change the terrain of the body that supports deep-seated infection.

However, she no longer needs the medicine to fight infection.  And in her chinese herbal formula, she no longer tests positive for the hallmark anti-bacterial, anti-viral herb for infection.

She tested positive (needs) homeopathic spagyrics to support her Spleen.  And to support the energy of her Stomach and Large Intestine (digestive, down-bearing energy).  In her chinese medicine formula, she now wants herbs to help the Lung.  My mentor understands these herbs to have an effect in auto-immune conditions.  In other words, first the foreign influence must be removed from the system.  Then, the body, which has become pathological from trying to deal with the foreign influence, must be reeducated to stop destructive processes and start constructive processes.  In other words, the previously over-burdened, over-taxed, and freaked-out system needs to be calmed down and re-educated on how to function normally.

It would all be a beautiful, but unconvincing theory if it weren’t that it has been working for me.  My left kidney is rarely in any pain, and a year ago, the pain was almost ever-present and very distracting.  I also had my creatinine levels checked a couple weeks ago, a measure of overall kidney function, and was very pleased to learn that it was back down to my pre-pregnancy levels of 0.7 instead of 1.1.  I had little hope of such turnaround.

The herbs that Adahlia is starting to test positive for were herbs that I started to take about 9 months to a year ago.  According to the theory, it makes sense that I would heal faster than her, because my body was healthy at one point and is returning to health.  She was formed in utero in state of ill-health.

This is also interesting to me, because I understand chinese medicine physiology.  While I cannot explain everything to you in this post, I can explain a little.  If you’re still reading, you will probably find this interesting:

In Chinese medicine, every organ is more than an organ, and even more than an energy.  They represent functions in the body that are functions that can be found anywhere in nature, and even in government.  The Heart, for example, is the Emperor, and its sole purpose is to receive the heavenly mandate (spiritual direction, or destiny) for your life and send it out (like a pulse) to all the cells.  The Lung is the Prime Minister.  It is responsible for keeping the body functioning in alignment with the Heart and its puropse, and it does this by distributing Qi (or Chi).  It is symbolized by the Mountain, and so the Qi is distributed like dew or raindrops from the mountain.  The Kidneys are like deep, black pools.  They are dependent upon the dew from the Mountain to sustain their depth.  They grasp the Qi from the Lungs as it falls, and recirculate it.  This is why health is maintained through deep breathing into your low belly, your dantian, your Gate of Life, your reservoir of energy.  If the kidneys cannot grasp the qi, if the Qi does not refill the reservoir, you cannot maintain health, and you will (sooner rather than later), fall into some sort of chronic disease, or not be able to recover from an acute disease, and you will die.

This is the importance of deep breathing.

Interestingly, for most auto-immune disease, the patient needs the bulk of the treatment to be through the Lung.  It is seen time and again.  Because what you have is a system that has become over-burdened.  Pathological.  And no longer functioning as the Heart is directing.  The Lung is too weak to keep the rest of the Organs filled with Qi and doing their jobs.  So it all breaks down.  No cells are listening to the only true Leader (Emperor/Heart) because the Lung can’t properly disseminate orders and keep the Qi flowing in its proper path.  Organs such as the Spleen, responsible for Transformation of blood and other substances, can’t function.  The Stomach and Large Intestine don’t have the energy to pull energy downwards.  Invaders can take hold, because there is no integrity to the system anymore on any level.  The system tries to respond but ends up attacking itself.  You have revolution.  You have anarchy.  You have a system in collapse, and eventually, death.

At this point, I would like to remind readers that Adahlia has signs of Kidney deficiency — not from the biomedical perspective, but according to chinese diagnosis.  But it is hard — very hard — to successfully treat the kidneys, according to any medical perspective.  They are, quite simply vital, and very deep, when it comes to health.  There’s nothing superficial about kidney health, and anytime you endanger their health (through an untreated UTI infection, for example), doctors will move very quickly to save them.

What we are doing with the Chinese herbs are approaching the kidneys through the Lungs.  We are helping the Lungs to distribute the Qi more effectively.  At the same time, through other herbs, we are encouraging the energy and Qi to stay down, to root down into the kidneys.  They are a bit too weak to grasp the Qi, and so we also include herbs to help strengthen them.  But the majority of the emphasis in her formula is on descending, on Lung function.  It was the same way for my herbal formula — in fact, it is still is a primary component of it.

Now, if you’ve read all that, hopefully you’re thinking:  Whoa!  That’s pretty cool!!

It is pretty cool.

Chinese medicine is a fantastically beautiful, challenging, cohesive and – what’s most important – true way of perceiving the functioning of the body.  This is not to say that the biomedical model is wrong. It is not wrong.  They are BOTH right.  They are simply looking at things in different ways, and I can try to explain that sometime.  The point is that if you work with both of them, you can achieve wonderful results, while causing minimal harm.

It just takes a lot longer to treat with natural medicine than it does with steroids.  And like with any medicine, there are no guarantees.  So its very hard to stick with, because change happens so slow, and it can be tempting to become frustrated and even give up.

Yet….

It is possible to successfully treat MS and cancer with natural and Chinese medicine.  Is it possible to treat red cell aplasia diagnosed as DBA?  I don’t know. We are pilgrims.  No one has tried this before.  We shall see.

This week, I will see how Adahlia is doing by taking her to get a finger prick test to check her hemaglobin.  In my own health journey, I was able to meet with my new Denver VA urologist and he agreed that they needed to repeat the nuclear medicine scan of my right kidney, to check its function.  Back in July, in was only functioning at 10% — which warrants removal of the kidney according to many specialists.  This specialist explained that there are two schools of thought when it comes to kidney function, and some specialists will agree that any function is better than no function, and will agree to try to save it even if its only at 10%.  But he said he will definitely try to save it if its at least 20%.  There is hope, because my overall kidney function seems to be better.

On Thanksgiving, we can always find something to be thankful for.  My challenge to you, dear friends, is to be a pilgrim.  The world needs more of us.

Fear not.  Follow your hearts.

There’s so much I could say on what’s happened in our lives since our last post, I scarcely know where to begin.

First, perhaps, the fact that we no longer live in Portland, or Oregon, for that matter.  We moved to Colorado in early August, due to a fortuitous job offer that Joe received (from his old company, actually.  They said they realized they made a mistake in letting him go, and that they needed him, that their other location in Colorado was struggling — would he come back to them and fix it and manage it, if they gave him a significant raise and a promotion?)

Like with so many things for our family during the last couple of years, it was miraculous timing.  A last minute thing. A retrieval from the frying pan.

Unlike the first year or so of Adahlia’s birth, I have become better at letting things happen.  Joe had received a temporary job that allowed us to remain in Portland last January, but things were looking dire for us again this past spring.  No one knew.   If they did, they would have been baffled that I wasn’t freaking out.  But I had reached a point where I no longer cared what would happen.  After all we had gone through, I had finally had enough.  I had no more struggle within me, no desire to try to keep fighting the tide.

Or perhaps that’s not exactly the right way to say it.   I knew, that what would happen, would be what must happen.   And I accepted it, no matter how ugly it might look, or no matter how much I wanted something else, some ideal, instead.  I brought myself to the table, following my heart/gut even when it seemed stupid, refusing to accept judgments on it, and let the world unfold the rest.

I trusted.  Not even necessarily that things would work out – that we’d all be together, or that we’d have a nice life, or whatever.  I let go of all my designs.

I know I’ve said this before, but if I sketched out all the things for you, if I told you all the lines drawn for me, creating a path simultaneously twisted and clear, so that all that was asked of me was to bring myself fully, you would be amazed.  You would call me lucky.

Even after all I’ve been through, you would probably call me lucky.

And I would say its offered to you too.  In boon times and in drought, it is still there.  Sometimes, it’s just easier to see (or sense) than others.

We are material creatures, and so material examples are sometimes easiest.  So let me say that Joe received this very unexpected but incredibly fortuitous offer, and moved out to Colorado in late June.  Because of her blood transfusion schedule, we had one week in which Adahlia could fly to Colorado with me to visit Joe, to see how she would handle the altitude, and for us to look for a place to live.  This town in Colorado, where we live, is a very hot market, and rent for a modest house in a neighborhood that would feel like home to me, would be a third more expensive than the mortgage would be for it.  Yet, houses sell the day the are on the market — many never even make it to the market, and are sold through deals cut through brokers in the know.  Homes for rent go similarly fast, but at higher price tags.  This is partly a result of the flood last year, and partly because of the location and economy.  All housing is at a premium.  And we had a week to figure something out.

Or possibly keep our family separated for a longer time.

Yet, strange event after event happened, and one house remained on the market when it should have come off — twice. A house exactly within our budget.  Long enough for us to see it.  Long enough to make an offer we felt comfortable with.  An offer below asking price — but accepted over another party’s offer, and then another’s, which was $15k more than ours.  Obstacles arose, and then fell.  I’m not saying Joe and I didn’t do our part — we did.  Gathering paperwork, mountains of paperwork, what with Joe having lost his job when Adahlia was so little, and being out of work for a year.  Yet, 30 days later, we closed on a house.  Its beyond phenomenal — if I weren’t sitting here, typing it, I would say it is unbelievable.  Moreover, it is a house that, when we visited, Adahlia rolled around on the floor of, clearly making herself happily at home, and when I questioned her, she said it was where she said she wanted to live.

On a soul level, in a way, I know Adahlia chose this house.  Or it chose her.  Or us.  Or it was part of the meant-to-be.  Either way, we live here now.  And its perfect for us, for right now.

That is only one example.

So much has happened, and in a way, so little.

Adahlia turned 2.   🙂   Now that is a big deal!  It was a wonderful little celebration. There’s a lot I could say about her adorableness and growth, but I will save that for another post.  I will only say that she is an absolutely fantastic little person, in every way.  And she loves her father so much.  When we got off the airplane, my heart melted to see her how she greeted her dad after not seeing him for 3 weeks: smooshing his face in her hands, petting his hair, gazing into his eyes, cradling his chin, pulling him close, giggling, eyes shining, not letting go of his arm, his neck, and continually petting him, touching his face. Beautiful.

Adahlia received a blood transfusion this past Monday, September 29th.  I’ve lost track — I’ll look up how many she’s had so far before we receive the next one.  It’s been her second in Colorado.  After her last transfusion in Portland — everything down to the wire (she received a blood transfusion Tuesday, then I had another stent replacement surgery for my kidney Friday, and then Monday I was directing movers to pack up our storage unit and my acupuncture office, and then Tuesday they packed up our NoPo apartment, and we were on a plane to Colorado that evening, and closing on our house 5 days later)  — well, it was only 3 weeks until her hemaglobin was again so low that it warranted transfusion.

Three weeks between transfusions.  I know there are families out there that regularly go only 2 or 3 weeks between transfusions, and honestly, I don’t know how they handle it.

After her first transfusion here in Colorado, for the first time ever, Adahlia pointed to her inner arm, where she gets the blood transfusion IV, and told me she didn’t want to have anymore of them.

“Your blood transfusion?”  I asked, as she pointed to her inner elbow.

She nodded yes and put the tips of her index finger together, the sign for ‘hurt’.

“It hurt?  I know.  I’m so sorry.”

She held up her hands in the “all done” pose.

“You’re all done with blood transfusions?”

She nodded yes.

“Oh lovey,” I sighed.  “I hope so.  That would be wonderful.”

And for awhile, it looked like, maybe, just maybe, it might be true.

At 3.5 weeks, we did a finger-poke test of her hemaglobin and it was 10.4  10.4!!!   When the nurse said it, I had to have her repeat it.  I couldn’t believe it.  I have never, ever had anyone tell me that her hemoglobin was in the double digits.   It was so miraculous, I started to laugh.   We celebrated that night with cupcakes … Adahlia was so excited.  She picked out 3 cupcakes herself, and we shared them after dinner.   (Afterwards, I regretted it a bit, because the sugar made Adahlia insane.  We won’t be repeating it!)

The next week, at 4.5 weeks, it was 9.6.   I was still happy, though aware of the downward trend.

Then, at 5 weeks and 5 days, Adahlia’s hemaglobin dropped 2 whole points, to 7.6.

Now, realizing that there is a margin of error to these tests, it can still be observed that she was holding steady for awhile, and then she dropped drastically in about a week’s time.

What were we doing different than we were doing when she only went 3 weeks?

Well, after her last transfusion (the 3 week transfusion), we began her on a mega-dose of folate.  She was already taking 400 mcg.  At her hematologist’s recommendation, I bumped it up to 1 mg (though she actually is taking closer to 1.2 mg), or three times the amount.

I also decided to get serious about her medicines.  With the chaos of the summer, and extraordinary chaos of moving, I had stopped giving her all the medicines exactly as indicated.  I would skip a dose here or there.  After she only went three weeks, I decided that I needed to go all-out or not-at-all, or in other words, that I needed to get serious about her health regimen or drop it.  So I gave it one last go.

It’s an exhausting regimen, I admit.  I would be glad to be done with it.  But I forced us to do it, and she did so well those first few weeks, that I became a believer in them.  And then I got curious.  I wondered:  Is she doing well simply because of the folate?  (It acts as an impetus to the bone marrow to increase RBC production.)  So that last week, after she tested at 9.6 Hb,  I dropped her homeopathic spagyrics and the chinese medicine and most of the other nutritional supplements…

And she plummeted.

It was just a trial, and no conclusions can be drawn simply from it by itself.  But I think it points to a synergistic effect of the medicines.   My theory is that the homeopathic spagyrics and chinese medicine are still needed to clear out a deep-seated, subclinical infection of the intracellular matrix, and that the folate and other medicines (mostly antioxidants) help the bone-marrow recover.  They work together, on opposite ends of the spectrum.

Of course, it also cannot be denied that she is under much less stress now than she was when we were moving (when she only went 3 weeks between transfusions).

So you can see what I say when I say:  A lot has changed.  And yet, a lot remains the same.

Additionally, I applied my “this is it — let’s get serious” medicinal approach to my own health and kidneys.  Along with Adahlia, I forced myself to stick to my many-pill, many-therapy regimen… even though there were many other demands on my time and a billion excuses I could have made as to why I had to skip a dose of one or another.

And I must say that at this moment I have no pain — that’s NONE — in either kidney.

Have you ever had a deep-seated pain?

Have you had it for two years?

Have doctors ever tried to tell you that they cannot find a source for the pain?

Let me say, that it is such a relief to not feel pain in my kidneys!  To be able to breathe into them without feeling fire and sandpaper and needlepoints and constriction.

And its been about 3 days without notable pain.

After two years, my friends, it feels wonderful.  Its amazing.  Its really, inexpressible.

….

I’ve learned so much during this journey, and I know that neither Adahlia nor I are “out-of-the-woods” yet.

I know we have a ways to go.

But we have ridden a heck of a roller coaster, and have found the value of things intangible, but of the only real value.

Over and over.  Loop after loop!  Deeper and deeper we go.

The strange unfolding of our lives makes it clear to me that I am not in charge.

And neither is anyone else.

If I had listened to so many well-intended others, ever since I became pregnant to this day,  I can say, with the certainty of someone who cannot be disproven nor proven, that neither Adahlia, nor I, would be as healthy as we are right now.

The moral is a paradox, as all truths are.

You must listen to everything and no one.

Listen to your inner self.  Do what feels right.  Remain true to your heart and gut, letting that be your guide.  If you do not know what it feels like to follow that call, practice in small ways, or small decisions, until you do.  You should only be afraid of choosing something not in keeping with your soul integrity — never of following it, even if it makes you the black sheep amongst white.  When we are stripped, it is the only thing we will truly have.

And then, surrender your sovereignty, but surrender it only to God.

I am so thankful for all we’ve come through, so grateful, and even more grateful because I don’t care if we have to give it all up tomorrow.

We are here.

And when it comes to states, it’s a good place to be.

… is always exactly where you are.

And not just in terms of location. I mean with your family – they are exactly who you need them to be. I mean in your love relationships. I mean with your health. I mean in your job. I mean EVERYTHING when I say that where you need to be, is exactly where you are.

Have you ever heard that? Do you believe that? Is that true for your life?

If not, I gently suggest that you consider (or reconsider) it.

If I have observed anything over the last 6 years, it is that this isn’t a place of mistakes or random occurrence. This is a place where everything connects, where everything influences everything else like ripples and waves and wind on the ocean, where the people in each others’ lives exist purposefully to bounce ideas and come into conflict and challenge each other into growth and awareness and towards becoming the highest version of themselves, into learning and becoming stronger in what is truly most important and least tangible. It is a playground for the soul. It is a place to learn.

A Bodhisattva does not exist without the pupil. They create each other. They trade places with each other not just over lifetimes, but in the same conversation. They enlighten each other.

Where we need to be is always exactly where we are.

There aren’t conclusions to be drawn from it. There isn’t blame to be attached to it. It is a faultless, guileless, simple truth, for the sole purpose of helping the soul to blossom.

Where we need to be is always exactly where we are.

And it appears, friends, that where Adahlia and I need to be isn’t in Portland anymore.

A remarkable turn of events has happened for our family. I have not mentioned it because everything was too in flux for anything to be said. But several weeks ago, Joe relocated to Colorado with an offer from his previous job that validated him in extraordinary ways. We’ve finally worked out how and when Adahlia and I will be joining him, and as the tide would have it, it looks like we are buying a house. If I expressed to you all the serendipity and pieces that have fallen into place for us to be able to buy this house, you would be amazed. (I am.) We took Adahlia out to Colorado to see how she would handle the altitude (doctors are concerned she will need a transfusion every 2 weeks instead of 4 weeks for the first 6 months she is out there, and that’s still a possibility. But they were also concerned she’d suffer headaches and muscle cramps due to not having enough blood cells to cope with the altitude… but she seemed to do fine.) Adahlia’s next blood transfusion requirement is going to line up with when we need to fly back out to Colorado to close on the house, and, miraculously, it looks like the doctors are going to be able to get an authorization to change the stent in my kidney a few days before we fly.

In the past 2 months, everything — and I mean everything — has come down to the wire. I have been unable to offer a definite exit plan to the clinic I work at, to tell them when I would be leaving. Every day since mid-June, the next week has been a complete unknown. Because of when Joe would be leaving for Colorado. And when we could (and if we could) join him, due to Adahlia and I’s health situations. I could schedule patients only one week out, and sometimes, I had to cancel or add them back in with only days notice. It has been a phenomenal bit of coordination and letting things happen one day at a time.

The owner of the clinic I work at, three weeks ago, actually only knows of Adahlia’s health situation. I haven’t told of her of mine — I’m not sure why. I think its because it just is all so much, and I don’t want to overwhelm people, and I don’t want pity. As she was learning of the latest steps in my process, with all the big things like where we would live, and if we would even move, and how we would handle the transition for Adahlia — all such big things hanging in the mysterious unknown — she said to me: “How are you so calm? How come you aren’t completely stressed out?”

I replied: “Because it’s entirely out of my control.”

Now, this is not to say that I didn’t have my moments of stress. I certainly did. But they passed quickly. I can honestly say that. Because each day unfolded one more piece of the puzzle. Every day, something happened that would direct the action of the next two to seven days. And as I couldn’t plan beyond that, I didn’t try. Instead, I accepted that where Adahlia and I would end up at summer’s end would be where we needed to be, regardless of what it looked like.

I have come to realize that where I need to be is always exactly where I am. And sometimes that place isn’t exactly comfortable, or nice, or a step up in the world according to the average American.

And that’s okay. I don’t care if its uncomfortable, or looks bad, or is a downward trajectory. And I can say that without falsity or bravado.

I accept it.

Because, my friends, I know nothing.

And neither do you.

We can’t see the wizard behind the curtain. We don’t know the master plan. We don’t know if its going to rain or be sunny in the afternoon, and we know even less if any event is going to be “good” or “bad”… and this is because “good” and “bad” don’t exist. They are moving targets. They change based on relativity and based on what happens next.

I don’t know what’s going to come of Adahlia’s situation. I don’t know why this disorder is in our bloodline (if it wasn’t a freak mutation), and I don’t know how it got there.

Today, one of my doctor’s expressed dismay learning that my surgery had been cancelled to save my kidney, because its function is too low.

“I don’t understand why it failed!” she said.

Well, neither do I.

Of course, I have my conjectures. Why did it happen? Because it was meant to be? Or perhaps it has to do with what I stated earlier — how everything is connected, nothing is a mistake, there are reasons behind everything. I see more connections between things than most people would prefer not to connect. (It can be daunting to start to realize the connections. And tempting, then, to play the blame game.)

If we are exactly where we need to be, and we don’t like it, how do we get out?

Well, we remain open to change, but we stop “trying” to be other than where we are.

We start with being where we are.

We start with listening: not to others, but to our deepest truth, gut, and inner self.

We act only from that place.

And if we aren’t sure of what to do, we do nothing. We see what unfolds. We let what happens, happen. We stop trying to control, to direct, to change, our lives.

Sound silly?

What will sound sillier then, is that we continue to stay there, in that uncomfortable place. And we examine everything we can about that place. And we love ourselves for being there. And we come to love that place. And we love God for having us there, because in it is the difficult and dark places that we learn and grow.

Things appear to be changing for our family it seems. Miraculously. Financially, and more important, in health. I have hope for my kidney, even though supposedly its dead. I have hope for Adahlia, even though there is no medical reason to hope at this point.

And when I say hope, I mean love.

I love my kidneys. They have been through hell, and they are amazing.

And I love Adahlia. She has been through hell, and she is amazing.

In my last post, I talked about what I had given up for Adahlia, to carry her and birth her and bring her to this day. It has not been easy. But the truth is, my friends, that I had some foreshadowing of difficulty ahead. There was a moment early in my pregnancy, when Joe told me that in certain religions, in order to birth an extraordinary person into the world, the price was the mother’s life.

I breathed. And then I said, “Well, if that’s what happens, I accept.”

Of course, though, I didn’t want that to happen. I knew and could communicate with and loved Adahlia while she was in my belly — an extraordinary person! I definitely wanted to know her when she was outside it. And the price for Adahlia has not been my life. I have been blessed to nurture her, hold her, kiss her, read to her, teach her, learn from her, and play with her. She is my very best friend. The best friend I wanted when I was little. The best friend I wanted when I was older. And truly, my best friend now.

Does she make me mad sometimes? Yes, of course. She can be ornery and demanding. But she is also the absolutely most intelligent, soulful, sweet, fun, inquisitive, and musical person I have ever met. And she is extraordinarily patient and reasonable. If folks say you can’t reason with a 2 year old, well, Adahlia and I prove them wrong multiple times a day.

The truth is, friends, that I would actually give both my kidneys for her. If conceiving her set off a strange chain of events and her existence ends up costing me my life, that’s okay. Even if she dies, too, and it all seems like it was for nothing.

Is anything ever for nothing?

Does not every movement, every ripple, even ever so small, cause an effect upon the greater whole?

Where we need to be is always exactly where we are.

And it does look like things are turning around for our family. We are enjoying it — oh, it would be wonderful to have a house! And to be healthy! That would be so fantastic.

But if it doesn’t happen, if the house falls through… well, that’s okay.

If something happens with Joe’s work, or Adahlia’s health, or anything else… well, that’s okay.

And I mean it. I kind of don’t care about things “working out” anymore.

I’m just happy to be here.

For however long I happen to be here.

And I wont go down without a fight — for myself, or for Adahlia.

Adahlia is now 2 years old. She celebrated her 2nd birthday the day before independence day. She still says “Happeebihrddday” and engages with me about it. (I ask her how old she is, she holds up two fingers. I ask how old she used to be, and she holds up one finger. “But not anymore,” I say. “Because you had a happy birthday. Now you are two.” And she nods and smiles and exclaims “happebihrdday!” and asks for ‘more’ happy birthday in sign language. Then I laugh and tell her not for a long time, that a lot of other people have to have a happy birthday first, and then she can have another one. “You get to be two for a long time,” I say. “Do you like to be two?” And she smiles and looks at me mysteriously: “yeeah.”)

I have so much fun learning and playing with Adahlia. Going on bike rides, getting pizza, emptying the dishwasher, running errands… she’s a trooper and a pretty darn good team player. We still sleep together at night… and in fact, she’s waking up right now and looking around wondering where I am. I should go.

Because I need sleep too.

Where we need to be is always where we are, until we no longer need to be there.

And then something will shift, and we will no longer be there.

We set our intentions, and we bring our best forward, but we don’t need to push it. We don’t need elaborate plans for our future (it is somewhat folly — there’s so much we can’t control or anticipate!) And we certainly don’t need to stress about it.

What we need is to be flexible, and strong in our center, so that the winds, the waves, the “slings and arrows of outrageous fortune” can strike us, and we find that we are okay in the depth of our being. We use it as an opportunity to learn, to grow, in our own Being. And possibly we will be able to offer something greater and deeper once we come through it.

Where you need to be is exactly where you are, until you no longer need to be there.

Believe it.

And love where you are.

There are all sorts of answers to this question.

Some women will say that their bodies were never the same:  their breasts, their abdominals, their hair, their hips…. the list goes on.

Some women will say that their relationships with their partners were never the same:  something shifted, something got lost, something became less important, something became more obvious, something became more stressful… and the list goes on.

Some will say that their professional lives, financial lives, and personal goals were never the same:  they dropped out of education, they left practice, they had to take out a second mortgage, they couldn’t afford the vacation they wanted, they were too tired, there were too many demands… and the list goes on.

The sadness, bitterness, and even resentment about all the things women lose in motherhood is tangible, even if its cloaked in a joke or wry smile.  But then, nearly all women will immediately insist that it was worth it.  That the experience was and is worth it.  That this person that they are bringing into the world was worth all the sacrifices and the many more to come.

I always thought women were kind of mean, and kind of stupid, and kind of sad, and kind of brainwashed, and kind of crazy, to say and think such things.

Because I thought that the cosmetic changes of pregnancy and post-partum were superficial and missing the point.  Because I thought that a true loving relationship rooted in mutual respect and understanding would simply expand to include a child.  Because I thought it possible to live a healthy balance of professionalism and motherhood, because I believed in the importance of my own contributions that come from my heart, mind, and hands, and because I had a solid financial foundation and few personal material desires.

Because of these things, I did not think having a baby would be much of a sacrifice.

And then my pregnancy became complicated.  And then Adahlia was born without the ability to make enough red blood cells to survive.  And then my kidney kept failing.  And then the VA failed to do anything about it.

And if you look at all the losses, they are staggering.  I lost thousands of dollars in savings and all the future plans for it (both personal and business) when Adahlia and I got sick and Joe lost his job.  Joe and I’s relationship has been stretched to a breaking point.  I lost my scholarships and had to quit my doctoral program when I could no longer pretend to be able to keep pushing forward, when it was clear to me that Adahlia needed me and that my health wouldn’t allow it.  And though I tried numerous times to re-start it, I never was able to reopen my healing arts practice when I closed it 6 months into my pregnancy, to give myself time to enjoy the last months of my pregnancy.

I would have never guessed I was closing it for the foreseeable future.

And I would have never guessed this latest loss:  my surgeon informs me that the kidney function test says that my right kidney is only contributing about 10% to my overall kidney function. Therefore, they won’t operate on it.  They won’t try to save it.  They want to remove my right kidney.

So, in addition to all the above, I learn that my pregnancy has cost me a kidney.

They tell me not to worry:  my left kidney is functioning fine.  I will have to be very careful not to get an infection, but lots of people survive just fine on one kidney, and I won’t necessarily have to go on dialysis anytime soon.

Yet, for someone who was climbing mountains and scuba-diving and rock climbing prior to pregnancy, someone who enjoyed traveling to remote (i.e., dirty) parts of the world and was planning on being a world traveler again, this is NOT okay news.

Moreover: my left kidney doesn’t FEEL fine.

Would this be any less upsetting if I had birthed a healthy child?  A child able to make her own red blood cells, who wasn’t always teetering near death?  Would it be easier if, at the end of all the tallying, I could at least point to Adahlia, and like the aforementioned women, smile somehow wanly and blissfully at the same time, because at least a healthy child has been brought into the world, and a child is a world of possibility unto itself?

It appears pregnancy demands sacrifice, and if one doesn’t find the typical road very sacrificial, a road will be created so as to test one’s ability to withstand it.

Of course, this is not the end of the story.

There are second opinions to be obtained.  There are battles to be waged in consultation offices.  There are losses to be cut and there are new directions to be explored.

There is a time to push onwards, because it is one’s truth, despite any and all obstacles.

And there is a time to cut free, and move in an entirely new direction.

And perhaps, as they wise woman in my dream said, the point is this:  “How low can you go?”

How low can you ride the tide?  Can you ride it until it hits bottom without losing yourself?  Without falling into despair?  Where is your center?  Because if you cannot ride it down, then you cannot ride it to the top.  You must find serenity of mind and integrity of purpose.  Let the waves come.  Let the hurricanes blow.  In the center, beauty and joy awaits irrespective of outrageous fortunes.  But, it requires work to find the center.

Meanwhile, Adahlia is amazing and is doing well at 4.5 weeks post transfusion.  I took her to the oriental medicine physician and herbalist I trust, and we tested her, and her inflammation is significantly less.  The auto-immune reactivity is almost gone.   We tested the homeopathic spagyrics I was using to flush her system last month, and they tested beneficial for her in addition to the chinese herbs.  It appears the therapies are working synergistically, and so I will start using them together.

I cannot speak for all children with DBA, but I know that I have been right about what is going on with Adahlia, and that whether or not she has a genetic marker associated with DBA, she also has a deep-seated intracellular infection that spurred an auto-immune reaction and systemic inflammation.  We are resolving these things little by little, month by month.

There is no doubt in my mind that Adahlia will be fine.  She will eventually be cured.

Can I regain my right kidney function?  Doctors say no.  I say yes.  I say that with the right and consistent application of acupuncture, moxa, herbs, and energy work like reiki and qigong, if they will just fix the kink in the ureter and leave me my kidney, that eventually, it will start participating and contributing more to overall function.  If this surgeon won’t do it, I need to find a surgeon that will repair the obstruction and give me a chance to heal my right kidney.  Because I completely agree:  a non-functioning kidney will be a potential seat for infection.

After all, what happened during my pregnancy?  My right kidney became blocked by a preexisting (congenital) but previously unproblematic obstruction in my ureter.   The urine backed up into the kidney, causing it to swell (and become rather painful.)  It stopped functioning.  It failed.  And (my theory):  an infection then went wild, unchecked by my immune system because it was suppressed for pregnancy, infecting Adahlia and triggering Adahlia’s bone marrow failure, causing systemic inflammation and auto-immune reactivity in us both, and well, that’s our story.

And I will need a report saying that I only had 10% function at a certain point, if I want to show that that these natural medicines truly are amazing, as we all know that they are, and that my kidney has recovered, and is now contributing 20% or 30% of function, correct?

Meanwhile, healthy or not, I have the most amazing little friend.  She has big, wise eyes and she strokes my face and wraps her little arm around my neck, pulling my forehead close to meet hers, and smiles.  She pats my back when we hug and she wraps her neck close to mine, as if we were giraffes giving a neck-hug.  She climbs onto my lap and stands, jumping up and down, holding onto my hands and swings herself side to side, singing:  “laddle, laddle, laddle!”  She gets on her wooden rocking horse, rocks it to its extreme point, and then climbs up onto the back of it, balancing there, taking on the risk of falling, standing on its back like she’s the lady on the white horse in an old time circus tent.

She steps down to thunderous applause.

You just might be a match for Adahlia or another child with DBA.

You could give the gift of another month of life.

Look up your Local Red Cross and Make an Appointment to Donate Blood Today!

Love, Erika

Hello Friends,

Just a quick note to say that its been over 4 weeks (as of yesterday) and Adahlia hasn’t had a blood transfusion.  Her hemaglobin was 9.1 (!!) on Thursday when we checked it (one day shy of 4 weeks).  A week ago, it was 9.4.  It has barely dropped!

To my knowledge, Adahlia’s hemaglobin has NEVER before been above 9.0 at 4 weeks past transfusion.  That’s almost normal for a little one!  (Normal toddler range can be as low as 10.2 according to some sources.)

In other news, Adahlia and I enjoyed her first-ever marshmallow roast with our lovely neighbors and friends last night in our backyard.  The adults were from Maui, HI – one couple has a five year old daughter and lives right beneath us, and one couple just moved here to Portland and has a 2 year old son.  We also enjoyed the company of the five year old’s 13 year old uncle and two boys from down the street.  It was a magical, low-key evening — one of those times when you realize you are living in paradise, or that an everyday moment of life can feel like a vacation.

Here’s a photo of Adahlia after eating a roasted marshmallow… she loved the ‘mallow but wasn’t a fan of the sticky fingers that result!

Where ever we roam, I know my heart belongs to the energy of Portland, Portland people, HI folks, and the HI lifestyle.

Adahlia’s First-Ever Roasted Marshmallow!

Keep sending love and positive vibes!

Love and light to you and yours.

Warmly, Erika

My goodness!  I haven’t updated this in so long.  Adahlia is sleeping and so much has happened that I doubt I’ll be able to finish it before she wakes from her nap.  I always wonder: should I talk medical stuff first, or should I update readers on the wonderful little things she does?  Maybe today I’ll mix it up.

Adahlia, excited for adventures, ready for her Hb check.  6-20-14

Medically, here’s the short of it:  She’s not cured yet. She’s had two transfusions since I wrote my last post (Apr 30).  But that’s okay.  Things have been rather wild…

Surfing.  I’ve written before about finding center, about standing still (or remaining fixed in your direction) while everything spins and changes.  About finding one’s calm in the center of chaos.  This is a similar theme, and  inspired by Adahlia herself – because she’s become quite the surfer.

Soon after she was first born, I noted and described Adahlia as a little climber.  Whether it was pulling herself up my shoulder or trying to angle for a higher position, she’s always had one thing in common with goats (for those of you familiar with goats):

She wants to go up!

It’s still true.  These days, she climbs onto anything she can.  Things that move:   the rocking chair I painted years ago (decorated with elephants and flowers).  Things that don’t move: the table, the counter, the sofa.  She climbs onto her wooden rocking horse decorated with dahlias (a gift from Joe’s side of the family) and then, she stands.  Holding onto to nothing, she grins, bends her knees, bounces and rocks a little… and surfs!

Its dangerous, sure, and she needs a spotter… but its fabulous.

She loves to do things like this. Today, she balance-beam walked along a curb.  (She wouldn’t take my hand.)  She does this along a cement-block garden retaining fence.  She sees kids climbing our backyard tree and she wants to do it, too.  If it goes vertical, if it involves balance and danger, she’s all about it.

What’s more? When she falls, typically, she laughs.

These days, in the swing, she loves getting what we call “a spinning underdog.”  Surely, you’re familiar with the old-time favorite, the underdog.  But like going up, Adahlia has a penchant for spinning.  Whether in our arms or on her bum or on her feet or on the merri-go-round, Adahlia loves to go “around and around and around and around!”   (Especially if someone — like myself, or a sock-puppet — is chanting:  “around and around and around and around!” until “boom!” she falls on her butt, again, laughing.)  In the swing, with spinning underdogs provided by myself or the little 5-year-old girl who lives below us (whom Adahlia absolutely adores), Adahlia shrieks, leans her head back to look at the tree branches or the sky, and giggles.)

Today, we went to get Adahlia’s hemaglobin (Hb) checked.  As I said, since I’ve written my last post, she’s had 2 transfusions.

Today, Adahlia is 3 weeks from her last transfusion.  And it was 9.4!!!   Since her first stay in the hospital, when they had to raise her Hb from 1.9 to 12 over a period of days, I have never had anyone tell me that her Hb was anything higher than somewhere in the 8s.  This means that next week (at four weeks), her Hb will probably be 8.5 or higher, which means she’ll go five weeks probably until transfusion (or longer!)  Of course, her Hb could plummet, and we always have to be prepared for that.  But this is FANTASTIC.

So what’s happened?  Well, soon after that last celebratory post, where Adahlia’s Hb was 8.3 at four weeks, her Hb plummeted.  In just a week’s time, it dropped down to 6.8.   She ended up going 5 weeks and 3 days before we transfused her, but since she dropped so fast I can’t really say she went a full 5 weeks.  I ended up having to get her into the hospital on fast-notice, because it was really obvious that her health was declining sharply.

During that time, that time she was doing better, I had started doing a new homeopathic spagyric medicine to help her energy descend downwards.  For the sake of everyone’s sanity, I won’t go into details here.  In the hopes it would work even better at increased levels, I increased it during that last week (and her Hb plummeted.  Hmmmm.)

After she was transfused, I decided to adjust my methods. Instead of encouraging her body to do what I wanted (supportive therapy), I decided to try again to clear it of things that might be hindering it from doing what it needed to do.  So I began a series of homeopathic spagyrics designed to cleanse the intracellular matrix from microbial toxins.  I did this, knowing it could make her worse, but also knowing that sometimes things get worse (stirred up) before they get better (just think of a fever that clears an infection).   While on this regime, Adahlia only went 3.5 weeks between transfusions, and she had a very rough time.  For the first week, she had ridiculous diarrhea.  Her diarrhea was so acidic, in fact, that it actually BURNED her skin.  I’m not kidding.  She would go to the bathroom, and make the sign for “hot.”  And I’m not kidding, her skin on her poor bottom peeled off.  The diarrhea smelled horrible; it looked horrible.  But the medicine was doing something.  And we did everything we could to support her during this process. After about 7-10 days, her diarrhea cleared up, but her nose began to run.  It was a thick, yellowish goop that was more of the consistency of a slug than of mucus.  It took a about 2 weeks for that to clear up, and she was fairly symptom-free by the time of her transfusion at 3.5 weeks.

I wasn’t sure if her body was done doing what it needed to do, but I decided to give it a break.  So for the last 3 weeks, since her transfusion, we’ve gone back to doing just the chinese herbs (as far as alternative medicines are concerned).  She takes them eagerly.  We also, of course, are still doing the Exjade to rid her body of excess iron, and those numbers are going down, albeit slowly.  At last check her ferretin was in the 1200s.  She’s also taking probiotics and the vitamins and amino acids she showed a deficiency in last Fall, but not as regularly as we probably should be taking them.  She’s also still taking AFA blue-green algae, because her body again showed a need for it when we had her tested at the chinese and natural herbalist.

Its pretty exciting that her Hb is doing well — 9.4 at 3 weeks post-transfusion isn’t shabby!  But we’ve learned a lot through this process, and one of the things we’ve learned is that it IS all about surfing.  About riding the highs and lows.  About finding that center-point and allowing the wildness to swirl about you and through you, without destroying you.

These days, Adahlia still doesn’t talk much.  She signs.  Her favorite signs these days are “two thumbs up” — which she learned from Red Yarn (her favorite children’s musician) — and “share”.   When I ask her if she wants to go to the park, she’ll nod and make the sign for “share.”  Its a beautiful sign, where you use your left hand like a platter holding a piece of cake, and your right hand like a blade cutting cake, and you divide the imaginary cake in half, using your blade-hand to scoot half towards the person opposite you, and half towards yourself.  To share:  some for you, and some for me.

It’s not easy to share.  Most adults would like to think they share well, but really, the truth is that we don’t.  And before you ‘tsk tsk’ on behalf of all those bad-mannered adults who aren’t good sharers like you, just imagine:  How does the idea of sharing your spouse — even with the kind and loving and amazing person — strike you?  No?  You see my point.  🙂

I’m sure that stirred up a bit of “well that’s an extreme example!”  but for little kids, everything they have is about as important to them as the notions of the exclusivity of a spouse.  They are quick to claim their moms when another little kid starts angling for attention or love.  Shoot, they don’t even like their dad asking for a bit of mom’s attention.  Their toys are THEIR toys and such is their whole world.  To share is a broad-minded and advanced concept, much like that of personal responsibility to others or to the planet (to not litter, to turn off the lights, etc.)

Well, we’ve been working on sharing for the past month.  And Adahlia’s gotten really good at it!  When I say we are going to the pool or park, she makes the sign for “share” and I say, “Yes! We are going to get a chance to share.”  When a child wants her toy, I ask her if its okay, if she wants to share.  She’ll point to her chest to say, its mine.  I’ll say, “Yes, its your octopus, and you can have it when he’s done.  Will you share?”  And she’ll smile, and nod, and make the sign to share.  Of course, there are limits (She once pointed to a little boy on a bike in the park, and made the “share” sign, and I told her we couldn’t share the bike, that she was too little to ride it yet, but soon.)  On more than one occasion, she’s also gone up to her father or I when we’ve been on the computer and told us to “share.”  Very amusing!

The “two thumbs up” sign is what Red Yarn does when he asks his audience to put one thumb up if they want to sing and give him two thumbs up if they want to dance.  Adahlia will be in the kitchen or in the carseat and say “mama.”  When I look, she’s got two thumbs up.  I do the thumbs up and exclaim: “put two thumbs up if you want to dance!” and then she sticks out her pointer fingers (kind of like guns) and moves them back and forth in a shoulder-shimmying, wild-west dancing way.

There are too many adorable Adahlia stories to recount.  She has a garden and she loves tending it with me.  She tells me we need to water the plants and she points each plant out to me so that I will exclaim about how well they’ve grown.  She can go up and down stairs on her own now, and she’s done it for a few weeks.  (24 months is the developmental milestone for that feat — so she’s a couple weeks ahead.)   She also can pick out nearly all the letters from the alphabet.  If you say, “find the D. Duh-duh-D.  Dinosaur.  Dog.  Duh-duh-D.”  she’ll pick it out.  I think she’s remember the pictures and letters associated with them from her various books (Dr. Seuss’s ABCs, Native American Art ABCs, Animal ABCs, etc.) Her ability to do this is most obvious when she plays with her LeapFrog learning laptop.  But I must say:  I’m not a huge fan of electronic toys, and up until a couple months ago, she hardly ever used it.  Its often hidden on a shelf – she’s maybe used it a total of a few hours over its entire lifespan.

Adahlia has also started counting.  I first noticed it a couple weeks ago when she pointed at the umbrellas outside of Cha!Cha!Cha! and said:  “beh! beh!”  (That’s how she says ‘umbrella’.)    Then she held up three fingers.   I flipped out.   I pulled out my phone and took a picture of us both smiling and holding up three fingers.

She does this often now — she shows me where there’s two dogs, or three flowers.

And she IS starting to speak more.  She calls the little girl below us “yana” for Aiyana and she calls the little boy down the street “bop-ah” for “papa”  (everyone, including his parents, call him “papa” — He’s five.)

Yesterday, she saw a honeybee in the roses and said “bee!”  She watched it gather pollen intently and I described how he was storing the pollen on his legs to take home to make honey.  Fabulous.

Adahlia still loves music and dancing.  She has pretty good rhythm already, and will stomp and clap to Red Yarn and most other music.

Adahlia clapping along with Red Yarn

She loves to stomp-clap pretty much everywhere we go, while I sing.  She’ll tap her toes to music, like she sees Mr. Ben (another musician) or her dad do when they play guitar, or she’ll lightly slap her fingers on her thighs to the beat, also like her daddy does.  I’ve sung her the “Five Little Speckled Frogs” song and “Five Little Ducks” songs that most kids learn in preschool, and she loves them.  I taught her some signs for them, and she’ll do the signs sometimes even to herself, as though she’s hearing the melody in her head.  She also, of course, still loves the Itsy Bitsy Spider and claps enthusiastically for the spider at the end, when he determinedly goes back up the spout.

So here we are, going back up the spout.  If Adahlia’s body has cleared something and her bone marrow is on the way to recovery — well, goodness, I would be thrilled on so many levels. But, if it isn’t, if we end up doing another round of the spagyrics to try to clear out her body again, or if I try something else, well, that’s okay too.

I had a dream a couple weeks ago, in which I was sitting at a large table with many people of many ethnicity.  (Dream analysts will often say that the people in your dreams are actually aspects of yourself.)   To my right was a wise woman, dressed like a hindu.  Across from her was a young woman.  The young woman was troubled.  She had a big problem.  I asked the wise woman what the young woman should do.

The wise woman turned to the young woman and said:  “How low can you go?”

The young woman’s pupils got wider and wider, until her brown irises were just rings around deep pools.  The irises began to spin, and her irises were flames, and I began to be afraid.  I began to breathe deeply to calm myself, and to let it happen.  I watched as the woman’s eyes spun around unknowable depths, and I knew she was changing, that she receiving and internalizing the transmission of great wisdom, which knows no words.

Today, Adahlia is officially 4 weeks, 2 days since her last transfusion.

I had a different post half-way finished — one I will still post, because its full of lovely, general updates on Adahlia’s life — but I had to post this one first:

Today (Weds, Apr 30), we had Adahlia’s Hb checked via finger poke at her pediatrician’s office.  It was 8.3.  Last Friday (Apr 25), it was 8.2.

That’s right.  Her blood counts are not only holding steady, they may even be increasing!

And though its a little too early to say that with confidence (there is a degree of error in any blood test, so you have to allow that the true number could be either higher and lower), you can certainlpy say with confidence what her hospital nurse said, which was:

<GASP!>  “She’s holding!”

But I must say it, because it is very important to my own heart to say it:

This is the first time EVER — I repeat, FIRST TIME EVER — that her Hb has gone up.

EVER.

Seriously, EVER!

I mean it.

EVER!!!!

…and that’s HUGE.

Hooray!!!!!!!

I cannot express what it would mean to me if she didn’t have to have transfusions anymore.  If she made her own blood.  It would be, quite simply, miraculous.

So, how did we celebrate?  Well, of course, we cancelled the transfusion we had scheduled for this coming Friday, and pushed it out another week. This is the second time in a row I’ve been able to cancel her transfusion (she was originally supposed to be transfused this past Monday, which would have been 4 weeks.)  Let me tell you, having to hold her and allow the hospital to give her an IV every month, that nothing sweeter comes to mind than getting to cancel a transfusion… unless of course, its cancelling two transfusions.

So back to celebration.  Well, it happens to be an incredible day here in Portland — sunny and 80 degrees.  It being Wednesday, we went to the Red Yarn concert, held at 10 am, by donation, for kiddos at Village Ballroom.  She danced, made friends in the funny little way toddlers make friends, and got to pet and feed a couple puppets (a snake, a groundhog, and a squirrel).  After, we came home, I pushed her in her backyard swing for awhile, we packed a picnic, and then we rode to the nearby park for a lunch of peanut-butter on cinnamon-raisin bagel, avocado, cottage cheese, and raspberries.  We played on swings and slides and she took off her shoes so we could spin barefoot in the grass.  Then we rode home again, taking a circuitous route because she told me she wanted more bicycle riding, and then now she is taking a nap on the bed, in all her naked-baby glory (except, of course, the necessary diaper.)

I could tell you all sorts of stories about how Adahlia loves bicycle riding. She has a front-seat, mounted on the handlebars of my bike, which is wonderful because it allows her to see and to feel a part of the big-people action. The seat is called an iBert and its fabulous.  It even has an unobtrusive little steering wheel so she can (pretend) steer.  But what is even better is when we take a turn – I tell her: “we’re going to take a right turn… put your arm out with me!) and she makes the signal with me.  Now, to be fair, her “left turn” and “right turn” look pretty much the same.  But its still wicked cute.  She absolutely LOVES riding the bike.  And she LOVES wearing her Bell Faction helmet.  Last night was our first ride, and I have a feeling we’ll be doing it daily.

So, I could tell you stories.  But I’ll save those to say simply that we are so happy and hopeful that this is a sign of Adahlia’s bone marrow kicking in to make its own RBCs.  We are doing lots of increased-intensity alternative and natural therapies for her, and of course giving lots of love and prayers.

Thank you so much for all your continued love, prayers, light, and energy.  Please continue to see her in vibrant health and wellness!

Love and light to you and yours.

Last night, for an unknown reason, I woke up in the middle of the night.  My stomach tightened as, for no discernible reason, I began to worry about what might happen if one day Adahlia wandered off.  And then I thought about how sad it is when people steal children.  And I thought about how everyone who meets Adahlia pretty much falls in love with her.  And then, like a crazy person myself, I couldn’t stop thinking or shake the sickening feeling as I imagined looking over from conversation or gardening and discovering that she was gone.

Now, I’m not a risk-adverse person.  And I know what I am about to say might shock you or make you “tsk-tsk” but its the truth.  I like risks.  I like challenges.  They are part of Life and I find them enjoyable.  In the sliding scale of “adventurer” on the extreme left and “worrier” on the extreme right, I am definitely further to the left side than the right.  And I don’t think being a mom — if I had been a mom of a rather typical or healthy child — would have changed that.  Because it didn’t affect my pregnancy.

For example:

When just about a month pregnant, I zip-lined the over treetops in a haunted forest, spinning in my rope seat, arms out wide as I exclaimed in exuberance to the baby in my belly: “We’re flying!”  Then, when I was about 3 months pregnant, I insisted to Joe that we go skiing and, yes, I did tumble in the snow… three times… and each time, I laughed.  And when it came time to give birth, I chose natural, drug-free labor and delivery even though my right kidney had been swelling all throughout our last trimester, causing bouts of kidney colic and extreme pain that left me bedridden every few weeks.  I didn’t freak out.  I was excited, not scared, and I gave birth like a champ.  I certainly didn’t want any unnecessary medical intervention for me, or my baby.

Now, maybe you think such things are foolish, or even stupid.  But I didn’t and still don’t.  I took and take what I consider calculated risks, and I still consider them worth it.

So, no, I don’t think that as a regular mom, I’d be lying awake at night worrying that my daughter might disappear on me.

But, as a DBA mom, you bet your buttons that last night I did indeed lie awake… for hours.

Because let’s be honest.  A healthy little girl always has a fighting chance at survival if she disappears, especially if she is smart.  But lets say Adahlia wanders away: even if someone meant well and wanted to take good care of her but was afraid of the law, she’s only got 3-5 weeks at the most.  Worst case: let’s say it happens when she is days from needing a transfusion (like now).  Or let’s say we get into an accident of some sort and I’m unconscious or dead, but she survives and is wounded and bleeding.  What are the odds of survival for a little girl who doesn’t make her own red blood cells and nobody knows?

And I realized:  the time has come for a medical ID bracelet.

So I ordered one.

Fact:  There are not many toddler-sized medical ID bracelets.

This is a good thing.

But having to shop for one is sad.

I finally found one I liked; one that I could put up to 5 lines of information on the inside of a sterling silver ID, so her information would be more private.  The front says “see other side” and medics undo a piece of velcro to turn it over to read it.  The plaque is mounted on a kid-friendly, pink velcro nylon looking bracelet.  I also ordered the bracelet in purple, as the plaque can be changed out onto different colored bracelets.  Its only 4.5″-5.5″ long.

I put a lot of thought into what should go on the plaque.  In the end, I chose:

Her name.  Her blood type.   Her diagnosis and what it means: “DBA Red Cell Aplasia”.  The words “Needs blood transfusions.”  My contact info:  “Mom: xxx-xxx-xxxx.”

And then I thought:  But again, what if I am available or unconscious myself?  How can I make sure she’s taken care of if no one knows what her most current medical situation is?  In DBA, a child’s medical situation can change drastically in a month, due to iron overload issues and many others.  Just giving her blood might not be enough.  Well-intended but ignorant doctors simply wouldn’t know what labs to order, tests to run, and interventions to give.  And DBA is so rare that the truth is that most doctors are indeed ignorant of the disorder.  Most have never even heard of it.

So I put the name of her hospital followed by “pt” for patient.

This way, I figure, if she is lost and found, they will try to contact me.  And if they can’t reach me, they will contact the hospital.  Medical and other authorities will be able to call and say that they found one of their patients.  They could access her nurses and doctors, and her record if necessary.  And I know her nurses and doctors would immediately jump to help her.  In an emergency, they would eagerly take over her care, or give directions to whatever hospital has her in their possession at the moment.  Shoot, maybe the ambulance would just take her directly to her hospital.  Who knows?

…

Sigh.

This is the life of a DBA mom.

Yet, I think I will sleep a little bit better, tonight.

And before I go to sleep, if you are reading this blog, say a quick prayer to the sales girl at the baby resale / consignment shop who, in conversation, randomly told me that her little son had died. How she was looking forward to trying to get pregnant again some day.

I did not mention Adahlia’s condition.

What is a DBA diagnosis to a woman who has lost her own child?  A gift.

I can’t imagine how she manages to come to work at a baby store every day.

When we finally were released to go home from the hospital after Adahlia’s original week-long hospitalization due to severe anemia, when her hemaglobin had been brought up safely from only 1.9 – barely life-sustaining – and the doctors had confessed that they were worried her heart would fail at any moment, which is why they wouldn’t let me nurse her, because digestion might take the few, vital blood cells away from her heart… well, it was a day of mixed feelings.   I remember coming through the door and staring at all the baby stuff scattered throughout the house.   Feeling a bit out-of-body and thinking how strange all the bright and gay baby items looked in this new light, this near-tragedy that all the doctors had made a concerted effort to tell us wasn’t over.  Was just beginning.  All those little items of hope and joy looked, well, like a lost dream.  And I told Joe:

“If we hadn’t taken her in when we did… or if she’d died… coming home to this… I couldn’t have…”

And he had nodded.  “I know.”

Goodness, friends, what we endure in this life!  Oh, its amazing.  We are amazing people on this tough, beautiful, and challenging planet.

Love to all.