It’s hard, when you have one very particular goal in mind, to not get bogged down in the fact you haven’t been able to make it happen.

It’s easy to forget how far you’ve come. What you’ve accomplished. Ignore what you do have. (And what you don’t.)

And so, in the interest of cheering myself along, I’m going to make a list of all the things Ive done for Adahlia — the conditions that are typically associated with DBA that she doesn’t have, problems solved, problems avoided, etc.

Because really, it could be so much worse.

Problems Solved, Resolving, or Avoided:

1) Brain inflammation & tics (solved)

2) ADHD/ADD/Hyperactivity/Dyslexia/other learning disabilities (solved and avoided)

3) Violent “over-reaction” when upset & irritability (solved; what remains is normal or appropriate)

4) Frequent gut / belly pain (solved)

5) Difficulty swallowing & frequent hiccups (solved)

6) Frequent painful mouth sores / Canker sores (solved)

7) Low white blood cell count / neutropenia (solved)

8) Complete lack of own red blood cells (resolving… usually has at least some level of her own RBCs these days)

9) Elevated liver enzymes (solved, sometimes slightly elevated)

10) High (dangerous) levels of cardiac iron overload (now non-existent)

11) At-rest signs of neurological stress (sleeping with fingers rigidly flexed)

12) Moderate-high levels of hepatic iron overload (now low)

13) Diarrhea (solved)

14) Leukorrhea (solved)

15) Loss of vision and hearing (prevented through proper supportive therapies for chelation)

16) Need to do nightly needle-pokes for desferal IV chelation & sleeping hooked up to a pump every night (avoided through proper chelation)

17) Extremely short stature (avoided through proper iron chelation and refusal of long-term steroids as an acceptable treatment option)

18) Precocious puberty (I can’t imagine the idea of her entering puberty in 6 months, at only age 6!, avoided through refusal of long-term steroids)

19) Osteoporosis at a young age (Again, I can’t imagine her having osteoporosis at age 8, or in 2 years, avoided through refusal of long-term steroids)

20) Diabetes (avoidance of long-term steroids and proper iron chelation)

21) Adrenal fatigue / insufficiency / failure (avoidance of steroids)

22) Inability to breathe deeply without discomfort (resolving; just started working on this)

23) Fear of strangers / distrust of others / dislike of being touched (mostly resolved as we went along due to lots of positive touch, EFT, Shonishin, moxa, honest conversations, acceptance, and trauma release work)

24) Frequent colds / upper respiratory issues (solved)

25) Frequent leg pain of unidentifiable origin (solved)

26) Lack of appetitie (resolved; will now eat heartily right up to and on the day of transfusion)

27) Immediate exhaustion during or after eating (solved)

28) Transfusion reaction (requiring Tylenol, Benadryl, etc due to reaction to the transfused blood; avoided to date)

29) Antibodies against donor blood (avoided to date)

30) Heart defect (resolved) and damage to heart from iron overload (avoided)

… and maybe there’s more.

….

Mama’s done good work.

I can do this.

Let’s get to work!

Here we go.

Believe it or not, friends, that is a name of a little-known acupuncture point.

It doesn’t have a typical channel-number name, like many of the most-known points (such as ST36, or Stomach 36). ST36 and such names are actually very modern. This one’s considered an “extra point” because it does not “belong” to a traditional meridian that has been catalogued by channel and number. Like most “extra points,” its Western identifier is a string of letters and numbers that make very little sense. Here, let me find it for you: oh yes, it’s good old M-BW-32.

Reads like an auto mechanics’ parts manual, no? Useless.

Of course, it also has a Chinese name, and its Chinese name makes more sense. Acupuncture points are typically “named” in Chinese one of two ways: 1) the name is a description of anatomical location or 2) the name describes the function of the point, what it does inside the body. Either is obviously useful for when it comes to remembering where points are and when to use them. It makes so much sense, and it is why I have come to “think Chinese” more and more over the last few years.

Let me put it to you this way: If you get a meet a mom despairing over how her daughter is anemic, I can guarantee the words “Anemic’s Inspiration” will flash in your mind. M-BW-32? Not so much.

Fun insight: Flashes of point names and herbs are what’s going on in my brain whenever I talk to folks with medical problems (which is everyone). I just pretend to be normal.

Back to M-BW-32. Obscure, right? This (and the fact that acupuncture is very difficult, a doctor friend of mine is attempting to pass the national acupuncture boards again after a couple failed attempts) is why we don’t learn many “extra” points in chinese medicine school. We’ve already got enough to learn. M-BW-32 is the acupuncture equivalent of DBA for doctors.

Most haven’t heard of it.

But, I dug around in some dusty old books and found it.

First, a couple days ago, I pulled my GIANT gold-covered (yes, it’s got a gold cloth cover and it’s HUGE, like a bible read at Mass) combination Nei-Jing and Nan-Jing text from the shelf. It’s a pretty book.

(I keep it up high to keep my own little Anemic from being Inspired to add her own text to it.)

It’s also pretty amazing if you start to read it. It’s written question-answer style between an ancient emperor and his medical advisor. The emperor wants to know how to cure his people of various diseases, alleviate suffering, increase longevity, etc. His advisor responds. Reading it is like slipping into Alice’s tunnel into Wonderland. It is DEEP. Full of strange pockets of amazing wisdom and helpful advice. Love it. Big hearts.

I found some interesting stuff in it. But like Alice’s tunnel and Wonderland, it is not exactly linear. (None of Chinese medicine is. Or ancient Chinese thought. Drives us linear, robot-logical Westerners berserk and gives us headaches even as we find it fascinating… until a few years in and you realize something happened to your brain and now you think in expanding and contracting circles, too…. “Everything is Zero… everything is One….one and zero are the same and opposite at the same time…)

Anyway.

Interesting stuff. I took mental notes. Inserted post-it notes. And then found something worthy of immediate further exploration. I wanted to see what else was written. So I went to my bookshelf. Dismayed, I realized my Deadman (author of the #1 acupuncture point location text, no joke) was at the clinic. Darn. But, I still had “Acupuncture: A Comprehensive Text” — a textbook I had bought “to read in the future” with some scholarship funds I had won from our school bookstore.

Now, the ACT is an interesting book itself. Interesting because it is organized in a way that is mind-blowingly unfriendly to the new student of acupuncture. Seriously. Talk about a rabbit hole. But, among those who’ve been in the business a few years, many consider it to be “better” than Deadman. More authentic content. (Perhaps the power of rabbit hole? You can’t just peek your head in to get to your destination. You’re forced to dive in and explore.)

Finding something in the ACT is like going for a walk in a new city. You stumble upon your treasures. You build your map as you go.

And that’s how it was for me. I was intending to look up Geshu, which is a known anemia point on the back and DU15, a point on the base of the skull, hoping for further insight, some sort of clue to curing Adahlia’s condition.

After reading about Du15 and while searching for Geshu, I magically (thank you Angels and Divine Intervention) flipped open the book to the Extra Point sections of the back.

I found not one, but THREE very intriguing points for the blood in that section.

And that’s just ONE section.

And yup, one of them was called “Anemic’s Inspiration.”

I proceeded to develop a detailed treatment plan for building blood using moxabustion. (I don’t needle Adahlia. She has made it clear that she’s had enough of being on the receiving end of needles, and we acupuncturists don’t typically use needles on kids until at least seven years old anyway. We often wait until much later.)

All this blather and you know the most interesting thing? A few months ago, I was doing moxa for Adahlia and she said she wanted me to moxa a different part of her than I normally do.

To be honest, I’d been fishing blind for years for a point that would help Adahlia’s anemia. I knew of Geshu, BL32, GB39 (Sea of Marrow)… had used points for the spleen, for The Gate of Life…. but had never thought to open the ACT, and to be fair, those 3 extra points I mentioned aren’t even listed in the index at the back of the book for anemia.

That’s right. Flip to the general index for Anemia and you’ll find Geshu and Kidney Shu. No other blood points are listed, not Blood Residence, nor Blood Worry. Not even Anemic’s Inspiration is listed. (See what I mean about rabbit holes?) So I literally had to get around to reading these entire ginormous texts.

Sorry, that’s not the most interesting thing. (That’s me making excuses for myself.)

The most interesting thing is that Adahlia has ASKED ME TO TREAT THAT POINT.

Seriously. One time, very recently, she asked me to do moxa on the point that I later discovered was called Anemic’s Inspiration.

At the time, I did treat it. And I treated it a few more times, sporadically. I did it because I trust her knowledge of her body and I’m always fascinated by the wiser-than-I-could-have-imagined things that come out of her mouth.

But, I didn’t do it often. Perhaps once or twice every 3 weeks.

Funny thing? She haaaas been making a little of her own blood the last few months. Hm.

Not enough to skip a transfusion, but much more, and more consistently, then ever. Hmmm.

As you can imagine, now that I realize she was drawn towards a point that is actually labeled an anemia point, I’ve now begun a full-fledged campaign of treating it, as well as the others. We’ll do it daily for a month and re-evaluate.

In other news:

Adahlia had her first LIVE vaccine this past Friday. Yup, MMR. I decided to do it …

1) Because I want her to have it eventually

2) She just had a transfusion on Tuesday, so she was strong and had enough blood and energy to face it.

3) Her labs said she had a solid number of white blood cells to fight infection and her WBC counts have been normal the past few months.

4) She hasn’t been sick for almost 2 months, which is CRAAAAZZZY for her. (For the last couple of years, she had a continual cold from what seemed like October though April. And I think I know why she’s doing so much better this year, and that’s not the point right now.)

5) We are considering trying steroids in the next few months. You can’t do a live vaccine while on steroids because steroids compromise your immune system, and the results of putting a live vaccine in a weak system can be disastrous.

6) I wanted to wait until WELL out of the danger zone of giving kids the MMR, which is before age 3. (Don’t know what I’m talking about? Go watch “Vaxxed” the documentary. Spoiler: Don’t give your kid the MMR at 12 months. Wait until age 3.)

Here’s the amazing part of giving her the MMR vaccine: Adahlia had no fever. In fact, I took her right to school after the vaccine, and she did well. (She apparently did extremely well in math — and had incredible focus. Go figure.)

Now, I know a LOT of kids who get a fever and otherwise react strongly to the MMR. So I was prepared for Adahlia to get very sick. I was prepared for even a hospital scare. I half-expected it. But Adahlia did NOT get sick, not even a fever, and that’s because her immune system is apparently now a rock-star. It was prepared. It speaks to how healthy she truly is, except for the anemia. To prepare her for the vaccine and to help her process it (ie, the day before, and day of, and for the last few days), I have given her supplements to boost immunity, protect her brain, and help her get rid of toxins. These supplements included a high dose of Vitamin C, Fish oils, and amino acid antioxidants specific to the brain. (Moms, contact me if you want details.)

Friends, that stuff matters. It matters to “normal” kids and it is VITAL for kids whose systems are struggling.

I”ll never know if Adahlia would have had a seizure, or high fever, or autism, or other event if I had made different choices in her vaccine schedule and supplements. But so what? Adahlia is doing stellar. In my choices, I displayed the use of preventative medicine, and preventative medicine means you never get to know what might have been — how bad things could have gotten.

But I’d much rather wonder “what might have been” from this side than be wondering “what might have been” if I’d done differently. I’d much rather have her brain working well than wondering if it would have been possible to have prevented my daughter’s autism, ADHD, seizure, or other learning disability, and having to work to undo the damage.

I mean, its like quitting smoking. Sure, maybe you would have not gotten lung cancer, but its still a good idea to quit smoking in the hopes of preventing it, because lung cancer really sucks, right? Right. Not fun to try to cure it, right? Double-right.

I could go on, I could tell you many things, but the time has come for me to do something else.

Good vibes, love, prayers, light, healing energy, etc are always appreciated. I’d be thrilled if we could resolve this chapter, and move on, without resorting to steroids.

Be well,

Erika

I’d be more eloquent but I’m in that in-between place where my mind is full, I’m tired, and I’m just… waiting.

Waiting for dawn to come, her to wake, and motion to begin.

I know there are things I can do. To help me sleep the night before her transfusion. And no I don’t mean medication. There are herbs, supplements, homeopathics, meditation techniques… I know many things that work.

But truth is, I’ve actually been sleeping fine. In fact, I was dead asleep having a fantastic dream until the toes of a small foot gripped onto my calf and flexed rapidly, in spasm, literally tickling me awake.

Have you ever been tickled awake? It was a first.

That happened at 2:39 am and I haven’t been back to sleep since.

It makes me wonder: Does she want me to be awake these nights?

It would seem fitting. To hold some sort of vigil on the night before transfusion.

It’s a mix of emotion that simply cannot be processed and purged. The expression of any one thought or feeling exludes the expression of the other, and its all simply too “packed” to express anything. I feel it all. I’d like to scream-laugh-cry-hit-smile.

I feel trust-dread-fear-peace-joy-gratitude-grief-longing-panic-rage-generosity.

I do wish I’d rested more fully, though, so I’d have more energy and clarity and for what’s ahead.

Last month, I used a numbing creme on her arm. I numbed a good 6 inch diameter circle of area where she typically gets the IV, in her inner elbow area. We had a new nurse; never seen her before. Of course, I was suspicious. Things rarely go well with new nurses. But I gave her a chance. And I kid you not — she “stuck” Adahlia outside the numb area. Practically half-way down the inside of her forearm. Said she felt a valve in her cubit (its not a valve, its scar tissue.) Adahlia screamed like bloody murder… and I had been promising her, the entire car ride there, that it wouldn’t hurt because it would be numb.

I was so damn pissed.

But, unsurprised.

(A string of muttered expletives would like to escape my fingers right now.)

Breathe in, blow out.

This same nurse, when Adahlia later fearfully whined, asking her not to draw so much of blood because she needs it (the amount of blood drawn for labs was actually routine, but I think Adahlia just no longer trusted this nurse), said, “Don’t worry honey, you make new blood all the time. You’re making new blood right now.”

I almost didn’t say anything. I’m just so sick of educating folks who should know better. But it was so blatantly… dumb.

“Um… actually, no,” I said. “She doesn’t make her own blood. She has Diamond-Blackfan Anemia. That’s why we are here.”

Ugh.

At any rate, because I can’t talk about how I’d like to do some sort of tribal grieving-wailing-ferocious dance right now, let’s talk about dream catchers.

There’s chinese medicine, actually, for children with night terrors. Isn’t that cool?

Such things were actually treated with concern back in the day… because clinicians actually cared about the psychological well-being of children, and genuinely wanted them to feel safe, and knew the importance of a holistic approach to health, because mental stress can affect physical health and vice versa.

(Sorry, I’ll try to filter better next time. <mutter doctors mutter mutter nurses>)

Anyway, sometimes I give the herbal medicine to her, and it does work. But she’s got so much going on in that body of hers, that more often than not, I don’t give it to her (she likes it though; she says it takes good.)

We went to Denver Art Museum for the first time this past Sunday. We had a wonderful time. And, while there, we bought a dream catcher for her. Why?

We were in the gift shop. She walked up to it, picked it up, touched its feathers, and asked me what it was. I explained. Her eyes widened. I knew what she was thinking — that it was perfect for her. She asked for it, said she needed it, and of course we bought it.

Guess what.

The darn thing works.

For me, too.

(I’d been having a run of intense dreams myself. The other night, I was in an airplane crash, was burned alive, drowned, and had maze of concrete tunnels collapse with me inside it, all in the same dream.)

Anyway, moral of the story is: for bad dreams, while of course I’ll tell you that you should consider a chinese herbal formula for settling the Spirit, there’s also the dreamcatcher.

We’ve had it for two nights now and I’ve grown quite fond of it. I really do feel like it zooms around at night, collecting dreams, and only the “good ones” know how to find their way through the web.

I think my “New Baby” gift ideas for friends now has a new item.

Well, I think that’s all I can write right now. Adahlia will get blood in about 5 hours, and will live an extra month, if all goes well.

I am grateful. Sad. And very tired.

There are things I can do for it — powerful meditations with Reiki to gather energy and clarity.

I know this. And I know the dawn will come.

It’s just been a long night. Staying awake; holding vigil.