Babies and Missing Pieces

People love babies.  Baby humans, baby animals, baby plants.

The baby I love most of all these days?  Baby red blood cells.

I have news:  Adahlia is making baby red blood cells again.

Remember, back in July, she made her own but they were so few that they were not even in the normal reference range?

Well, now she is making them.  Her IRF (immature reticulocyte fraction) and Absolute Retic Count are both solidly in the middle of “normal” on their respective reference ranges.  These numbers mean that she is making her own red blood cells.

This is big.  This hasn’t happened on this scale since she was less than a year old, and we were living in Portland.

What’s different?  What’s happening?

Well, perhaps nothing.  But, perhaps something.   For the past 6 months, I’ve been combining therapies in a wiser way.  In the past, I’ve missed things.  I’ve not seen the whole picture as clearly as I am beginning to.  And I’m confirming some of the things I originally thought.

Also, my mindset has shifted.

In the past, I’ve been desperately trying to cure her.  To find “the missing piece” that would put the puzzle of her marrow dysfunction back together, and make it function correctly.

More recently, I’ve acknowledged that she may not be cured.

And I’ve moved towards a mindset of just trying to make her as healthy as possible — which is no small task considering all the transfusions and chelation medicine.  Her body consistently runs in an abnormal, toxic state.

It seems like a small thing, but a shift in mentality can spell big changes in reality.  Instead of trying to “cure” something, I’m looking at perfecting her system the way it is.  So that even with all the toxicity and dysfunction due to a malfunction I can’t correct (the lack of red blood cell production), she’ll be as optimized as possible.  I came to this:  Maybe she’d never have a “normal” life.  But I could help her function and be as healthy as possible, minimize catastrophe, save organs and senses, and help her live at her highest level.

It is kind of a Systems Engineering thing.

And its also a very energetic thing.  With this shift in mindset, there is a difference in my sense of centeredness, of purpose, power, and peace.  Something has solidified.  Something has strengthened and brightened.  It is not something easily described.

Some things, then, we’ve been doing differently in the past 4 months:

  1. She’s fully gluten-free again.  (Sounds crazy that I’d miss this, no?  Here’s the thing:  I hadn’t, really.  She was gluten-free from Jan ’16-July ’16, prior to her first (small) reticulocyte increase.  But then, after her birthday, when her diet blew up into a sugar bonanza, I somehow got it in my head that she had tested negative for gluten intolerance.  I’m not sure why.  In reality, I had simply never tested her.  Why not? Because last January, I had decided to treat her as if she had an intolerance.  Why? Because these tests are very expensive, and I needed to make some choices. I decided I needed to know more about intolerance of hundreds of random foods (such as herbs, eggs, nuts, fruits, and veges) than I needed to know an in-depth analysis of her reaction to the dozens of proteins and peptides that comprise wheat.  I could just make her gluten-free.  Worst case scenario would be that it was an extra precaution we didn’t need.  I could test her in a few years, if I (or she) ever wanted to know if she could eat gluten.  So, from July-September, Adahlia ate gluten as we took a break from our strict diet, and even as I introduced the Chinese herbal formula I had such huge hopes for.  It wasn’t until this Fall, when I tried to pull up her wheat-reactivity panels to take another look at them, that I realized they didn’t exist.  It wasn’t that she could eat wheat.  It was that I had never tested her.  Do I think that DBA is a simple gluten-sensitivity issue?  Hell no.  Do I think that dumping a bunch of gluten into the System helps an already-compromised System?  Certainly not.)
  2. Sesame oil on her skin.  (Okay, don’t laugh.  I actually think this has made a huge difference.  And I’ve been doing it primarily because Adahlia has been requesting it.  I applied it one night on a whim after reflecting on its properties and using it for the last few months as a “swish” in my own mouth to prevent cavities. Adahlia hated it when I asked her, playfully, to try “the sesame swish!”  I figured she’d also hate it on her body, finding it too sticky.  But she loves it.  She asks for it every evening and after every bath.  I rub it gently into her stomach, chest, back, arms, and legs. I don’t rinse it off.  So, what’s going on?  Sesame oil helps detoxify the body as an anti-microbial, anti-viral, and anti-inflammatory.  Our skin is our largest organ.  And before you say, “Big deal, coconut oil does the same thing,” let me tell you that sesame oil has one huge leg-up on coconut oil:  In ancient Chinese medicine, sesame heals the deepest energetic layer, the ancestral organ network, which includes the bones and brain and which today translates as genetic level issues.  Sesame oil nourishes the yin and the essence.  Friends, very few things are listed as nourishers of our “essence.”  So, instead of applying lotion or coconut oil to Adahlia’s rougher skin areas (areas that are highly significant in Chinese medical diagnosis), I have been applying sesame oil.  Just today, as we drove to the hospital for transfusion, I remarked to Joe:  “Well, at least her legs are better.  Have you noticed? Her skin is much better.”   Do I think its a coincidence that her skin luster, moisture, and softness (yin) has remarkably improved as she’s begun making her own blood (yin) in Chinese medicine?  Do I think its coincidence that the areas that are typically rough follow along an exact acupuncture channel?  Do I think its coincidence that these specific areas of skin get rougher and drier as she gets lower in blood, and then mysteriously improve in texture after a blood transfusion?  On all counts:  No.  Mark my words, friends:  In 5 years, sesame oil will be “the new” coconut oil.)
  3. Moxabustion.  (Adahlia has randomly started asking for moxabustion treatments.   This is something I did for her as a baby — perhaps, if I check my notes, back when she was regularly making her own red blood cells, but not making enough to avoid transfusion.  Why did I stop?  Because it wasn’t curing her (at least by itself).  Why did I start again?  Because it is no longer about curing her, but helping her body to heal and function as well as it can.  Instead of a curative therapy, I reintroduced it as a supportive therapy.  And again, that changes things.  Last year, we used moxa with great success to guide the exjade chelation medicine to her heart, and we got dangerous levels of iron out of it (built up from iron overload) in just 6 months.  However, moxabustion is not something the average person has the ability to do at home.  And so, I’m not going to delve into it here. But, I believe this also has been key.  Adahlia asks for moxa daily, and so for the last week or two, I’ve done it for her daily.  In fact, I just took a break from typing this to give her a moxa treatment.)
  4. Diet and supplements.  (Bone broth, fresh vegetable juicing, and several supplements that she has tested low or deficient in.  I won’t list them all here.  I believe they are individual-specific.  There’s a whole diet here that is a step-wise plan for gut-healing.  And whenever you are talking about System health, you need to at least think about treating the gut.)
  5. Leucine.  (Now, before everyone freaks out that leucine maybe is “the cure” after all, please note that we aren’t doing it to the level of the clinical trial.  Adahlia has only been taking approximately half the recommended amount for her body mass that they are doing in the clinical trial, and she has only been doing it for a little over a month.  According to researchers and others who have tried to use leucine to increase RBCs, it takes a good six months to get hemaglobin results.  Indeed, we did an at-home trial of the recommended dosage over a year ago, but we gave up after approximately 3 months, as I couldn’t get her to take it regularly (it tastes nasty and I ran out of ways to mask the flavor.)  She had zero increase in reticulocytes or RBCs during that 3-month time.  But, combined with everything else, is it helping now?  Quite possibly.  And, perhaps, at an encouragingly-less-intense dosage.)
  6. Fever.  (I believe this is huge.  Now, its typically understood that having a viral illness causes a drop in red blood cells, or causes the person with DBA to “burn through” their donated cells more quickly.  And in fact, in past years, we’ve noticed this too.  But Adahlia has been sick for the past two months.  Her RBCs haven’t plummeted. If anything, she’s gone remarkably long between transfusions.  And these’s haven’t been weeks of mild illness.  She’s had nearly constant nasal drip, stuffiness, cough, occasional vomiting, and at least three days of fever (two consecutive of 104 degrees, with another day of fever a couple days later).  She’s missed several days of preschool.  In fact, Adahlia’s finally turned the corner just in the past week.  Why didn’t her RBCs plummet?  I think its partly because she has been doing Chinese medicine to support her spleen and liver and eliminate deep-seated pathogens.  And because honestly, I don’t think this has been a “normal” cold.  I think she’s flushing something out.  I think something deep within her is shifting.  And I believe I’ve mentioned in other posts that many children experience a remission after viral illness or taking anti-viral medications.)
  7. Reiki and other therapies, both on her and self-performed. (Why treat myself?  Because Adahlia is still very much tied to me energetically.  In the interest of going to bed soon, let me just say that we’ve experienced some pretty wondrous things.  Why have I renewed Reiki?  Well, again, because I just want her to be healthy even if she is never cured.  Also, because she is overdue for her next cardiac and liver analysis of iron overload, and I don’t want her to lose her hearing and vision to the chelation medicine.  But primarily, because it has gotten so strong.  Something is going on with the Reiki — it is very powerful these days.)

So, do you believe I’ve given up on curing her?

If you do, you don’t know me very well!  In fact, Joe just announced that a package was literally just delivered a minute ago that I’m pretty excited about.  A Chinese herbal medicine from the Materia Medica that people have apparently forgotten, that my world-renown, school-founding mentor who speaks at least three languages said he had never even heard of, and told me he didn’t think I could find anywhere here in the states, and only possibly in China.  The ways it was described in the ancient texts made my jaw drop.  It seemed to fit her to a T.

Would this be the missing piece????

… Some things never change.  🙂