Bracelets for Adahlia!

They are absolutely beautiful. (And only $3.75 each!! They retail for $7.95.)

The bracelets are wood and feature an iconic image of a spiritual figure truly embodying grace, love, and healing: Our Lady of Guadalupe.

The "Official" Adahlia Bracelet for Healing

The “Official” Adahlia Bracelet for Healing
(click image for more)

The story of how this bracelet came to be the bracelet supporting Adahlia’s healing is wonderful. I invite you to read it and – if you like – wear your support for healing and love.

Thank you!!

Love and blessings to you and yours.

Adahlia’s 14th transfusion

Adahlia’s Hb was 7.7 yesterday. It had been four weeks since her last transfusion.

This is not necessarily bad news. In fact, its pretty good. Adahlia’s previous blood draw said her Hb was at 6.8 after four weeks.

If she had only been 0.3 higher, we might have elected to wait another week for transfusion, to try to get more of her RBC stem cells to turn on.

In fact, the doctors were expecting us to resist transfusing her, expecting us to want to wait a week to keep the stimulation on her bone marrow to produce RBCs. But she’s started to show some signs of anemia: more easily upset, quicker to cry, getting disoriented more easily and muscles giving out and falling. We knew she probably was not as bad off as before due to the fact that she was still ok with letting joe hold her, instead of needing me. The thing is, I want her brain to get plenty of O2. I want her body to have the oxygen it needs to grow. And so while sometimes, with kids on chemo, they wait even until 6.0, we chose to transfuse. Her body is under enough stress. We are lucky she has been able to grow normally, mentally and physically, as it is.

This is approximately her 14th transfusion, as she received 5 transfusions when she was initially admitted to the hospital at 6 weeks old, and then one a month since then, except for one time when she only went 2 weeks before needing another transfusion.

This is important because doctors expect to start having problems with rising iron levels, or iron overload, between 10-20 transfusions. Iron cannot be readily eliminated by the body, so it ends up getting stored in the liver, pancreas, and heart, causing failure of those organs. Doctors monitor iron storage via blood Ferretin, which is imperfect but gives a ballpark figure to estimate the body’s iron load. Normal is less than 200. Approaching 1,000, doctors start to worry and will use pharmaceutical cheating agents to pull the iron out of her system. The drugs save lives, and can cause side effects.

After she was released from the hospital that first time, at 6 weeks, her iron was 520. It likely continued to build up after that point, but we never measured it again until March, when the reading was only 490… after six more transfusions.

Its really inexplicable according to biomedicine. I now attribute the drop to the fact that I was giving her liquid chlorophyll, approximately 1/4 tsp in some water, twice a day, for about a month prior to her March blood draw, for the purpose of building blood. Chlorophyll is high in vitamins and minerals — including iron, which I did not fully realize it at the time.

When I realized chlorophyll was high in iron, I stopped using it with her. But the fact that her ferretin dropped instead of worsening didn’t make any sense, so I looked into it further.

There are contradictory opinions in the medical community about liquid chlorophyll’s ability to leech out excess iron. Some say that it is idiocy to add a high-iron supplement to iron overload. Others say that the organic plant-based iron pushes out the stored excess, somehow aids its release, or perhaps triggers the body to expel it.

I’ve mentioned how I’ve been giving her baths in bentonite for about a month. Bentonite binds to toxins, viruses, and heavy metals and draws them out of the body. My intention was to draw out toxins as well hopefully excess iron, even though, like chlorophyll, it is actually high in minerals (including iron) itself. About a week ago, when I learned of the controversy surrounding the use of liquid chlorophyll to remove excess iron, I cautiously reintroduced it, although this time I only gave it to her it at bedtime.

As you can imagine, I was very curious to know if any of this would have any effect, or, to put it more precisely, help reduce her iron load.

Well, her ferretin count was only 507.

Her iron levels remain only half of what the doctors would expect them them to be, given how many transfusions she’s had.

Her doctors were thrilled. They said that either she’s using the iron (which doesn’t make a whole lot of sense since she’s not making a lot of her own blood) or she’s found a way to excrete it. I’m thrilled because it appears that maybe we can use natural measures to keep her iron down. And the less pharmaceutical drugs we give her, the better.

I am considering doing a little more liquid chlorophyll, perhaps reintroducing the morning dose. I think that perhaps the bentonite is not working as well as the chlorophyll, at least not yet. I will continue the bentonite clay baths, though, because the clay also helps nourish and moisten her skin, which can be dry (lack of yin fluids to moisten appropriately, according to Chinese medicine, which makes sense with her lack of blood). The chlorophyll is nice because it contains many elements that she needs to build blood, in conjunction with its detox abilities.

The other encouraging news was her reticulocyte count, which was 27. This is the second highest its ever been and qualifies as low-normal in a non-anemic person. Now of course, since she was so severely anemic, it should have been like 115. But, if it keeps trending upwards, it means that her bone marrow is recovering and making more red blood cells in response to anemia, like it should.

And that is why the doctors thought I’d want to wait on the transfusion, because a rush of transfused blood will cool RBC production. But, it should still trend upwards as the transfused blood slowly begins to wear and die out, if the bone marrow is indeed recovering.

The transfusion itself was also one if the easiest ones she has had. The phlebotomists were stellar, as usual. Where we got lucky was with the IV tech, who (we found out later) is considered in the pediatric hemo/onco ward as one if the best. Heavy-lidded, heavy-set, and absolutely devoid of expression, I was pleasantly surprised to witness this middle-aged hispanic man expertly insert the IV catheter into Adahlia’s cubital fossa in just one poke. Wrapping it gently in a loose, bumble-bee patterned self-sticking bandage, he tossed a couple jokes around and left. If I wasn’t holding Adahlia, I would have hugged him.

It was a huge improvement from the 6 or 7 attempts it took the IV tech last month. And it set the stage for a less physically painful 4-hour transfusion to follow. She did cry and scream at us more than normal, but it was because she was mad about being there and frustrated about not being allowed to crawl on the floor, not because it was particularly traumatic. We read books, ate strawberries, took laps around the floor with her IV drip, and played with finger puppets to try to pass the time. In some ways, it was a good sign. A healthy baby doesn’t want to be in a hospital bed. A sick baby doesn’t necessarily mind, just as long as no one is poking them with needles.

When we eventually got home, she immediately calmed. As Joe remarked, “She just wanted to be home.” Instead of being manic and unable to rest, like she typically is for 24 hrs post-transfusion, she played quietly and happily, and was able to eat, bathe, get ready for bed, and fall asleep with no problem at all. Chinese medicine says that the spirit travels in the blood. If that is true, it makes me wonder about the donor. Whoever it was, his or her blood didn’t make her hyper and seemed to agree with her.

Adahlia’s greatest joys still include reading picture books together, especially when I sing them to her. She adores games involving curtains and blankets, sharing (handing things to us), feeding (she like to put things in her mouth and ours), and turning things off and on. She’s figured out how to turn off and on my breast pump and it makes her ecstatic, rocking back and forth and squeaking, to keep pressing the button.

She can turn a light switch off when we leave a room, and can pull the chain of the bedside lamp to turn it on and off. I try to remember to let her do it for us, because she gets such a thrill from it. I think it makes her feel like a god, to be able to affect light like big people do.

And she shines on, brightly.

Where we’re at

Somethings you don’t want to hear your surgeon say in the course of surgery include:

“Oh dear.”

“Oops, now, this is tricky”

“Do you see that? I’ve done hundreds if these but this one…”

“Let me call Dr X and see if he can come over. Im not willing to apply the force required. Maybe he’s on his lunch break.”

“Luckily, all we had on hand was the long-lasting spinal anesthetic, so we used the 2.5 hr instead of the 45 min.”

“We’ll have to put you under if this doesn’t work. Or have you come back another day. This is the last thing we can try before we open you up.”

The day was a riot. Everyone was awesome.

I started early that morning, before I got out of bed, by setting a couple intentions in the Traditional Usui Reiki tradition, filling the hospital with light and love, filling my care team with light, and setting and accepting that everything would happen for my highest good.

When I got to the hospital, I was prepped for surgery. Sitting cross legged on my bed and naked under my hospital gown, I explained to my surgeon and anesthesiologist my occasional days of lack of pain, my willingness to do surgery if necessary, my desire to do everything needed for my health but no unnecessary procedures, for I did not want any unnecessary trauma to my body. The doctors were attentive, and I witnessed the tensions I had sensed from my surgeon over our previous phone call evaporate. She was reasonable and understanding. They contacted imaging and squeezed me in immediately for an ultrasound of my kidneys. Yup, the right one still was swollen with a “bear claw” indicating tissue damage. It appears that over the last 6 months, I have simply found ways to turn off and cope with the pain. Makes sense.

It is a lot better to go into surgery 100% behind it, knowing you need it, than have doubts in your mind. Given what followed, it was very good that I was committed to the surgery, for it did not go easily.

It took 2 anesthesiologists a total of 6 spinal pokes to get me “paralyzed from the waist down, numb from the chest down.” A spinal is a couple layers deeper than an epidural (given for cesareans). I chose a spinal over general anesthesia because it would not affect my milk and there were less risks, given my heart rhythm irregularity. It would be better for Adahlia, for me not to take chemicals into my milk or risk my life.

What was incredibly fun is that an MD-acupuncturist, one I’ve worked with in the past, was able to come do some acu anesthesia before I went in to the OR. I had emailed her two days prior, and she came in on her day off to do it for me. I was absolutely thrilled to see her.

As you can probably tell from my quotes, the surgery itself didn’t go according to plan. To get my twisted, compressed ureter to open, my surgeon had to call in one of the top urologists, a guy often voted “Best Of…” in Portland Monthly magazine. It felt like my kidney was a fish at the end of a fishing line and he was flopping it all over inside my body. A very surreal feeling. It also kind of felt like how a dog shakes a chew toy in games of tugofwar. Extraordinary, to be conscious while your insides are being manipulated and thrashed. When the ureter opened, and the kidney drained, it was like a dam bursting with a roar, and I could feel all the liquid draining from my kidney. It was wonderful.

So it all worked out. The last few days I’ve been resting, healing. Peeing blood. You know, the usual post-surgical joys. But I’m very glad I did it.

And it makes so much sense from a Chinese medicine and energy medicine perspective why Adahlia is having her bone marrow difficulties.

In biomedicine, it is understood that the brain undergoes significant development in the 3rd trimester. The brain, bone marrow, and kidney are part of the same system in Chinese medicine. In the 3rd trimester, my right kidney went into acute failure, as my right ureter became occluded. At this time, I also noted that my right kidney pulse (chi) had sunk and was barely palpable. These pulses are typically very strong while pregnant. While I was able to come out of acute failure, carry the pregnancy to term, and deliver vaginally, I did experience subsequent acute kidney episodes.

The right kidney in Chinese medicine is called the “Gate of Life.” It is the entry point for your prenatal energies into the physical, postnatal world. (Interestingly, according to my surgeon, most people who have kidney problems experience those problems with the left kidney. The right kidney is simply that important.)

When my kidney went into failure, it created a shock throughout my body, surely impacting Adahlia in the womb. It is no wonder that her gene expression for DBA switched on, that she developed inflammation in her brain (which develops during 3rd trimester) and began to have difficulties post birth. Energetically, if my own Life Gate was faltering, then Adahlia surely would have trouble igniting the fire of her own and incarnating. It is no secret that the health and vitality of the mother impacts the vitality of the babe. It may even have to do with mechanotransduction: how cells sense biological, chemical, informational and energetic changes in the cellular matrix and adjust their own processes accordingly, even down to DNA changes and gene expression. And, its no wonder that latent pathogens began to stir up and cause inflammatory responses in both of us (nature abhors a vacuum).

The good news of this story is that all of the above has been and is being addressed. By unkinking my ureter, fluids and energy are able to flow in my right kidney again. I have done a great deal of work maintaining my health through this affair through diet, energy, oriental, and natural medicine, and hope to regain much of my right kidney function. Both Adahlia and I have been on a Chinese herbal formula to address hidden pathogens, and those are mostly cleared from our systems. Our inflammation is greatly reduced thanks to diet, herbs, and homeopathy.

We won’t know for awhile how much of my right kidney function will be restored. My doctor is going to do some kidney function tests in a couple months and hopes we can get at least 20% of it back. I, of course, intend to try to restore more. But even if it turns out that I have irreversible damage, I have no regrets. I have learned a lot so far on this road… more than I could have ever learned from a textbook or from case studies. Everything in my life happens because it is necessary, because there is a larger good. Of this, I am certain.

What is very interesting to me, watching myself and Adahlia through the last 2 years, is how all our various symptoms match and mirror and correlate across biomedical, natural medicine, and oriental and energy medicine perspectives. There is so much that can be done to maintain and restore health if all systems work together; if there is understanding and care taken to use each where appropriate. It is my belief that I will be able to restore a lot of my kidney function. Although it was waterlogged for some time, it was well-cared for with nutrients and moxa.

And this brings me to Adahlia.

Now, finally, my most basic life essence has been unblocked. What should have flowed to her in the womb but was stopped during the 3rd trimester, now flows freely, even if it flows weakly. It will grow stronger — for I can help it. I know the body responds favorably to reiki, energy work, moxa, acupuncture, diet, meditation, qigong, and herbs. Adahlia is still just under 11 months old. Our energies are still closely connected. It is possible, I believe, that if I am restored to health, Adahlia will suddenly find herself in spontaneous remission.

Yes, I think so. Let us make that our intention.

Thanks to all who send support, ideas, encouragement, love, and light.

Surgery complete

Just a quick note:

I am out of surgery; it was intense (i wasn’t sedated), there were complications, but it is done and I feel pretty good, just very tired with some pain.

I will tell the story later.

Everyone was wonderful. I had an incredible care team.

Adahlia looks great, just pale.

Thank you so much for sending love and light.

Much love,


Though my doctor and surgeon is not so good at listening, at this point, I intend to go in tomorrow, at least to talk, and to likely have imaging done. I will be prepped for surgery in order to have the imaging, so I know there will be a lot of pressure to go forward with it. It may even be for the best. At this point, its hard to say.

Today has been and up and down day in regards to pain. My milk supply is definitely significantly lower — and that’s always sad. We had to supplement with donated milk earlier today and likely will again when she wakes from her nap.

I really think I have something going on like pyelonephritis or glomeronephritis. It’d be great if it was a simple UPJ obstruction, but I just don’t see how that alone addresses all that’s going on. I just hope it isn’t autoimmune in nature. I do think natural medicine could cure it. I am curious to see what the imaging says. My guess is that if the right kidney appears swollen, the left will, too. They vie constantly for my attention.

More fish oils, some vit-d, cranberry and lemon juice are in my near future. Nothing, not even water, after midnight. And a shower with a hideous, surgical antibiotic soap. The appt is scheduled for 8 am. I will be bringing my breast pump and will pump in the waiting room and wherever I can (during the procedure, if i could.) Joe and Adahlia will be in attendance. I am not sure how long the whole ordeal will be — every hour without pumping will further endanger my supply. I must do it as often as humanly possible.

Adahlia. Adahlia has looked better, and clearly has felt better. Joe will have a rough go of it tomorrow at the hospital. She is very needy, very easily upset, and rather waxy looking. She resists sleep but her naps stretch … and stretch. She loses her balance easily and several times a day her muscles just seem to give out underneath her. It’s very upsetting to everyone when that happens.

She does, however, really enjoy her little organic rice and fruit puffs. If I hold out a little, dime-sized star-shape to her, she will bite off one of its points with her tiny sharp teeth. The puffs are very easy to mash and dissolve. Her puckered lips and far away look of inner fascination with all the sensations in her mouth is unbearably adorable.

Perhaps my absolute favorite thing about Adahlia right now is not the gentle little open-mouth kisses she gives (kind of like a fish blowing bubbles; they are delightful treasures), but what happens when we lean our heads together, so that our foreheads touch. We both just kind if melt away into light. We pull apart, smiling and a little bit high. We look in each others eyes, she giggles, and I feel surging elation and an all-encompassing peace. We are old, old friends.

Decisions, decisions

Forgive this post, for it is mostly about me, not Adahlia.

I am still slated for the rescheduled kidney surgery, to place a stent in my right ureter, on Friday. Today, I had a remarkable acupuncture appt with Dr Hood. It felt immediately much better afterwards, but now the pain creeps back in, on both sides.

As I arrived home from the appt, I received a call from my surgeon. She had called to campaign for the surgery, and to apologize for being out of touch, as her mother had passed. (I told her I was very sorry to hear it.) The surgeon pressed on, talking about my options for the surgery. I asked her if there was any chance she thought I could postpone. She asked why I thought it would get better on its own, stressing that the right kidney has a structural issue (UPJ obstruction) that needs a stent. I replied that the pain comes and goes bilaterally, and that the swelling has come and gone as seen on imaging, and that I was doing things like a kidney flush.

At this point, she lost it. She literally began yelling at me for doing a kidney cleanse and for using natural and Chinese medicine. Angrily, nearly shouting, she said that herbs are dangerous, that she didn’t know “why people don’t ask us if they have questions,” and that “we have the answers.”

I nearly hung up at such an obvious fallacy. If she or anyone else had been able to give me any clear answers, we wouldn’t be having this conversation.

She continued on, barely stopping to breathe, dismissing my reluctance or concerns regarding surgery, insisting that stents save kidneys and prevent dialysis.

Now, Im sure they do, but why put unnecessary foreign objects in the body? All I was trying to do was to get a feel on how necessary surgery truly is for me. After all, my pain has come and gone for over a year. Is it do or die time? Or can I try to resolve it with more visceral manipulation and natural measures? If the right ureter is partially occluded, why does the left kidney sometimes have more pain than the right? I’m not saying that there isn’t a crossing vessel or other obstruction- the doctor who did the visceral manipulation perceived one, too. (And supposedly, he rectified that.) But what if the blockage allowed some sort of toxin or pathogen to build up in my kidneys? All I’m saying is that I think the picture is a bit bigger, and I don’t feel comfortable having surgery when there are aspects of my case that don’t fit the explanation, or when the answer only addresses some of the picture. I don’t like not feeling listened to.

That’s what got me and Adahlia in this mess in the first place — no one listened when I said something was wrong, and then once stuff got real bad, suddenly folks think they know, and have the answer, but then they still don’t really listen.

Or, am I being childish? Foolish? Do I need the friggin stents? Or will it only cause more trauma, more inflammation in an already delicate area?

Because if I do the surgery, it had better be worth it. I shouldn’t breastfeed Adahlia for at least 24 hrs afterward, and she doesn’t tolerate that very well. (In fact, after the CT scan with contrast dye, I ended up having to breastfeed her just an hour later, and I was hoping to wait 12-24. But she was hysterical when I got home, had been that way for over an hour, and refused to take a bottle from me. There was nothing else to do but breastfeed her, and I still feel bad about that, even though supposedly the dye is safe. And to make it worse, the CT scan was practically useless, because the dye had not made it to the ureters before they took the pictures. All that trouble and heartache and exposure of Adahlia to dye in my milk… Practically worthless. I don’t want a repeat event.)

I’m sure my surgeon is simply stressed, especially as her mother has just died.
But the question remains: do i need this or not?

I don’t know. I do know I didn’t like being yelled at and talked at as though I were unintelligent. To her credit, she did end up apologizing, saying that she is concerned for me, and that’s why she talked to me in such a tone. And I do believe her. But part of me also can’t help but wonder if shes really thinking dispassionately, especially since she’s consulted with her colleagues, they are so certain that all I need is a stent, and I will be fine. I sense she’s got a lot invested in me. Is some of that investment her pride? Doctor knows best?


I have no idea what I will do.

I have taken a drastic action, though, to see if it works, if it cuts my pain and helps me say no to surgery. Back in January, before I knew it would reduce milk production, I brewed and drank some fresh parsley tea. I did notice my supply drop, and we had to work hard again to get it back up. But my kidney pain went down to nothing. I assume it helped me void. (Its really hard to say without imaging.)

Adahlia still breastfeeds… She maybe gets 20-25% of her nutrition from baby foods, but she prefers milk. She’s just been kind of slow to take to the idea of eating. I definitely don’t want to wean her when she’s not ready. I don’t want the parsley tea to end breastfeeding for us. And it is a powerful weaning agent, used to dry up the milk supply after the baby is weaned.

But I think I need to try it again. So I drank about a half cup an hour ago and will drink another half cup or so in a bit. I will just have to be diligent about pumping and feeding her as often as possible in the next 48 hours, and hopefully the stimulation will be enough to keep the milk flowing. And of course, take some lactation tonic herbs, too.

Mothers Day Prayer

I lie next to Adahlia in bed, our bodies elongated “c”s facing one another. My thumb gently presses the top of her foot, my fingers curled under her her toes. The knuckles of her fists find comfort in the warm pliability of my arm; my muscle yields willingly, like a pillow to slightest pressure.

I pray in thanksgiving for this moment, for the incredible reality that I am a mother to this being. I give thanks for this child, for her wise, adult expression, her puckering, funny faces, her laughter like a bubbling brook, lifting and cleansing the room as does a shower from an elephant.

I give thanks for this body, for its incredible transformations over the years. I give thanks for the miracle of my womb and my milk, for my ability to receive, create, and nourish. Let the wisdom and peace gained from my life experiences be painted across my body over the coming years. Let my eyes shine bright of the beauty within, let my voice be a river, let my palms be open, my heart expansive.

I give thanks for my ancestors and all the work they did so I could be birthed into this moment, so I could be the person I am. I give thanks for who and where I am, this sacred place I hold. I sense my lineage behind and around me, stretching throughout time. In front of me, lying next to me, the carrier of this lineage forward. I ask to free this line from ancestral patterns of anxiety, worry, reaction and fear, and I give thanks for having the opportunity to do that work in this life. Yes, let the line stretch from me, through her, and into the future, full of strength, joy, and trust. Let us know trust and joy in our bodies, womanhood, and our physical embodiment. Bless us with radiant and compassionate intelligence. Let us shine strong in emotion, steady in spirit.

I ask for blessings for my daughter and my family and myself. Surround us, bathe us, in divine grace, always. Open our eyes to see in the dark, our ears to hear within silence. Let the world shed its patterns that no longer serve its highest potential. Let our children and their children inherit a transforming world, vibrating with light and love.

Bless this child and bless me in my motherhood. Bless her with perception and discernment. Surround her with helpful beings of all form. Guide me in my care-taking and responses to her. Let them always be of highest so that she can grow into her highest. Bless me in my stumblings; bless me in my centering.

I give thanks for motherhood. I give thanks for the transformations I have already witnessed in Adahlia and I’s ever-evolving relationship. Bless our connection. Let it always be strong. Let it be the root that nourishes her as she reaches towards the sun.

I give thanks for this moment, this exchange of love, shared between divine beings. Let it be imprinted upon my soul, let it flow like a melody in the symphony of my being, let me carry it forward into eternity.

Sunshine in Pdx

Another gorgeous, sunny, warm Portland day!

We just got back from a hike with our friends, their beautiful 12 year old pitbull, and adorable 5 month old son. He was fascinated with Adahlia, who kept him entertained with a stream of baby vocalizations.

She did really great on the hike; Joe and I took turns carrying her. She stayed awake the entire time and seemed to enjoy herself. Now, she naps.

I feel better after the hike, too – my right kidney had been hurting at a dull throb since I woke up. It still feels a little heavy, but I think the movement was helpful.

And there is just nothing like a hike on the trails through Forest Park. So much wild beauty in our city’s backyard! It’s a phenomenal treasure.

We are at that tricky time, over 2 weeks post transfusion, when she’s starting to look a little wan or waxy, especially in the mornings… And I wonder how much is real and how much I’m obsessing. It’s so hard because I am both mother and practitioner. I can’t help but notice what my eye is trained to observe, and with my own child, its observations too easily become worries. Acknowledging my observations and releasing the worry, anxiety, and fear that threaten to take over is daily practice. Closer to transfusion, it becomes an hourly practice.

In moments like these, it’s important for me to focus my attention on my diaphragm. (Its movement is much freer since the visceral manipulation.) I visualize it like a bellows, pushing and swirling energies through me, drawing air into my lungs and coursing Qi through my entire being. As it moves, it carries out through my feet, root (pelvis), and breath all the unhelpful tensions and anxieties. Down it goes into the earth, where she recycles it and uses it as energy to help plants grow. I visualize my center glowing brightly, its fire fueled by my breath, its flames steady.

And then I am steady, centered, and clear, and able to be here, strong and present, for my family.


Its been a week or so since my last post.

A lot has changed… there have been significant improvements, I believe.

Adahlia is doing well. She clicks her tongue to talk to us, opens drawers, enjoys games of chase, and takes the spoon from us to feed herself organic pureed veges and fruits and blends, and even hands the spoon back to us so we can give her more. She is attentive, inquisitive, and strong. Her inclination for music is as strong as ever – rocking her body to music, reading picture books together, feeding herself, taking baths and showers, and being outside in the backyard, are some of the things she really loves. She gets very excited to do any of them.

She is taking two doses of chinese herbs a day, usually, sometimes only one. I estimate she is getting about 1/3 of what we had intended to give her. But dosage is an interesting and much debated subject in chinese herbal medicine, and at least she is getting something. I’ve been able to give her some very good moxa treatments while she naps recently, using a higher quality moxa, and I believe she is responding to them.

Last Friday, I gave us both a bath in water mixed with a cup of bentonite clay. She was constipated the next day, and spent an uncomfortable day and night. Clearly, it was too much for her. So, the next morning, we took a warm bath in about a cup of magnesium sulfate (epsom salts), because magnesium draws water into the intestines. Happily, the situation resolved there, in the bathwater, and she was fine the rest of the day. I had intended to give her a bentonite bath twice a week, but it might be more like every 5-7 days. I will have to experiment to find the best dose – perhaps 1/2 cup of clay with 1/4 cup of epsom salts.

The bentonite should be able to pull out any toxins, pathogens, or heavy metals that might be in her system, the environmental toxicity or pathogen that I believe is causing the expression of the DBA gene. I am also taking bentonite internally at night every couple days, and am making sure to increase my water intake, as well as to take my prenatal and fishoil vitamins in the morning, just in case of any absorption issues.

Yesterday, or perhaps it was the day before, she had an absolutely fantastic poop. Poop is a big topic amongst natural medicine practitioners because it is one of the best indicators of the health of an animal. And yes, while I know that many “experts” say the poop of a breast-milk fed infant varies, her poop has historically not been healthy. Too liquidy. Too much mucus. Strangely colored (bright yellow, bright orange, even green). Much, much too stinky. Well, we’d noticed for a few days that her poop wasn’t stinky anymore. And then yesterday, it was not only practically odorless, but it was this fantastic smooth, creamy peanut butter consistency. Healthy poop! Hooray!!!!

Last Thursday, I saw Dr. Tom T, who does visceral manipulation. It was absolutely amazing. I felt so much better after his work on my kidneys and liver, after they were freed up and moving as they should. Today, we had a follow-up. He was very surprised, and said repeatedly, “you are a very healthy individual.” He was not expecting me to heal so much between the two visits, and sent me away today after our appointment saying I was good to go. (He had told me he anticipated 3-4 visits). The blood flow to my right kidney is better, my diaphragm moves more freely, my kidneys and liver now move with my breath (as they should – they were stuck), and in general, it just feels like there is more room for everything now that everything is in its proper place.

On Sunday I was able to receive a PHENOMENAL acupuncture treatment from my mentor, Dr. Brenda Hood. She is a truly amazing acupuncturist. At one point, it literally felt as though someone had placed those paddles used for restarting a heart on my right kidney – it nearly made me jump off the table. It was a very strong, very therapeutic treatment. For about two hours afterwards, I felt as though cured. I had tons of energy and zero pain. Then, I crashed, and needed a nap. Its okay — most animals in need of healing naturally sleep more — and this sort of burst of energy and/or extraordinary fatigue is a healing pattern I’ve seen in my own patients.

There is still some discomfort in my back and flanks, but that’s because structure is probably only part of the issue at play. The dregs of something still needs cleaned out, and I feel I need alot of rest and restoration on a very deep level. I also think I do better when we regularly drink a glass of juiced carrots, celery, beets and apples (a glass a day). I think it helps nourish or support my overall health, so more energy can go towards healing my kidneys.

Dr. T also took a look at Adahlia, and pronounced her very strong, very energetically sensitive, and very healthy. Like most who see her, he was very smitten. He found her to be a remarkable little person and was highly impressed, but also at a loss for her red blood cell issue. He simply couldnt see anything wrong with her from his perspective, and in fact, thought her amongst the healthiest, and brightest (in spirit) of children.

Perhaps, as I’ve improved so much in the past week, she is improving too. We are 2 weeks from her last transfusion tomorrow, and she looks alright. We are prepared for the start of her decline and a need to transfuse her, but we also feel that it is possible that she is better. Mentally, emotionally, socially, and energetically, she is great. She is very communicative, very affectionate, and not nearly as fearful. She recovers quickly from disappointments and has even displayed extraordinary patience. She is well coordinated, likes to play and be mischevious, and learns quickly. She clearly understands some basic words, like “water,” “milk,” “no,” “wait,” “come,” and “more.” When she wakes after a nap, she doesn’t always start to cry, sometimes she just calls out for me to come get her, and she doesnt cry in her sleep nearly as much. She breastfeeds much better than she ever did before. Its wonderful – absoluetly beautiful – and I am so happy we have it. And, while it is only the second time that she has ever had such a healthy poop, I find it very encouraging.

With all this good news, I must be honest in that yesterday was very difficult for me. I had a resurgence of pain in both kidneys and it was really disheartening. I felt SO good over the weekend and I am really wanting to be better, and have this whole ordeal behind us, that it was quite the blow. But perhaps I exerted myself too much, because I did feel so much better, and today, I took it easier – I napped with Adahlia and took a couple hours off from caring for her, and let Joe help me more.

In sum, our journey isn’t over but we are doing much better, and we are actually quite healthy aside from our strange disease, and we are very, very determined to heal. Luckily, we are in the right city to do it, and I happen to have the education, resources, and skills necessary for healing mysterious illness. As appointments with other professionals wane, my own treatments of Adahlia and myself continue. We are getting better – its just a couple steps forward, and one step back. We just have to keep at it.

Thank you so much for your continued support. Thank you for your laughter, your prayers, your love, and light!

Diagnosis of DBA still stands

Sorry about that…

But no one is sorrier than I to realize I was wrong, and that the initial report I saw in my inbox, saying her results were normal actually is some sort of confusing, terrible code for abnormal, as her actual full report says she does, in fact, have the RPS26 gene mutation.

Id be lying if i said this didnt disappoint and sadden me. And lies are not the purpose of this blog; there is strength in truth.

We still pray for the spontaneous healing recovery that 20% of children experience. We are grateful for your well wishes and prayers and light and love.