… That was the sign posted on the captain’s door of the private jet hired by a top-earning DJ in Vegas in a story in the most recent edition of the New Yorker. A big spender but deep thinker, he commented that its actually a profound life message.

I agree.

And we’ve had plenty to ponder about slides these days.

Before the recent storms and rains hit, Adahlia and I, or Joe and Adahlia, or the three of us, used to go to one of the parks nearby nearly every day. Adahlia loved riding down the slide on my lap. Well, a couple weeks ago, two days after my surgery and with the fall winds blowing, we decide to go to the park. I was too weak to do much, but Joe held her steady and walked along the slide as she went down, solo, for the first time. I started to feel a bit left out, and being unable to play and enjoy Adahlia due to days when I feel too sick has been hard for me to accept at times. So, I tell Joe I want to slide down with her. It’s the first time she’s worn her new boots to the playground.

They are actually just new-to-us: a pair of brown, below-the-knee boots bought last year from a kids resale boutique. I bought them when she was barely sitting upright and before I understood anything about kids shoe sizes. (I thought, hmm… these kind of seem like they work” and at home, in a moment of clarity, I realized they were so clunky and heavy that she couldnt lift her foot. Into the closet they went. But, they fit her now! And they are her favorite outdoor shoes.

On that fateful day, we positioned ourselves at the top of the slide, and she was safely tucked on top of my legs on my lap. But as we come down wooshing down the slide, she throws her leg out from where I’ve nestled it between mine, and the rubber sole catches to the side of the slide like money thrown to the top of Kell’s Irish Pub downtown. Her foot stops. The problem is, we keep going.

Joe hears a pop but I don’t. Either way, her leg got torqued in a way that Joe describes as being impossible for an adult not to suffer serious damage (“thank goodness she’s so flexible!” He says.). Except whatever happened is beyond the miracle of Baby Flexibility. She starts howling as I lift her up off the slide, and when we get to the grass, she can’t stand. Won’t put any weight on it. We begin to fret around her like two wild animals with a lame baby.

Long story somewhat shorter, the pediatrician at Urgent Care tells us that it happens all the time: parents think they are being both cautious and fun-loving by going down the slide with their toddler, but its that weight of the parent that ends up snapping the bone. (By herself, a child would just stop if her shoe got caught.)

X-rays at the ER don’t show a fracture, but the pediatrician is adamant: a toddlers fracture doesn’t always show, and a toddlers bones will break before they’ll suffer a sprain or ligament damage, due to their flexibility. There is no or minimal swelling, and it has a decent range of motion, but she refuses to let us touch it.

Imagine how I felt. Over three weeks since transfusion, so she’s low on blood, and she’s standing but still hasn’t figured out walking yet, and I go and break her leg on a slide.

At this point, I am thinking about how every thing I would have not wanted for a child to experience in her first years of life, so as to grow up with a positive outlook on life, and feel safe, and cared for, has happened.

I’d like to say that I didn’t beat myself up over it, but I did.

I also did everything I could think of to try to heal it. When homeopathic arnica didn’t work, I tried bellis perennis and finally ruta graveolens (the last of which may have helped, so I used it in again on the following day.) We used fish oils to help with inflammation and I also gave her a dose of tumeric. To help the bones or ligaments to heal, I applied Zheng Gu Shui, a topical spray that roughly translates to “Righteous Bone Water” three times a day. I gave her reiki daily. We wrapped her leg in an ace bandage and waited.

The pediatrician told us shed call again in a day or two and that we could expect referral to an kids orthopedic specialist on Monday.

And Adahlia was due to get her blood tested with a possible transfusion on Weds.

Great.

The Slide Incident, as I like to refer to it, happened on Friday. The next day, she put weight on it once, made a face, began to cry, and held her leg off the ground like a little wounded deer. We did our best to keep her from trying to stand… or crawl. Though I was still in pain and exhausted from surgery, I carried her a lot. She was inconsolable. She’d wake up, roll over, and start crying. Everyone was miserable.

The day after, Sunday, she stood, (she is very strong-willed), tried to bounce in time to music, and began to cry. But she could crawl by pushing off her good leg and dragging the injured one along. We took it as a positive sign and reported it to the pediatrician when she called. The pediatrician was dubious and sounded almost disappointed (understandable, because its a rare experts on anything who is okay with being wrong) and warned me that it was still probably broken.

But the next day, Monday, Adahlia stood on it several times, very cautiously. She didn’t try to move much (or “cruise” because she doesnt free-walk yet, she just holds onto stuff.) But she could stand.

And then the next day, she was “cruising” fine.

So, either the therapies worked (I do think the ZGS spray had a lot to do with it) or the bone didn’t break after all, which, if that is the case, I believe we owe to her tall boots, which provided some stability to the bone, even as its rubber sole stuck to the slide.

The moral to loving parents everywhere is that if you go down the slide with your toddler, take off the shoes and go down with them in socks!

When your kid has a blood disorder, you’re depleted because your health isn’t so hot either (or maybe its just from caring for your baby), and things are tricky at best financially, the idea of “Don’t push, Slide” becomes even more paramount.

Adahlia and I got a real bad, supper-stuffy, sore-throat cold on top of everything, just days after the Slide Incident. It was tough, but it also meant that we took time to make a really, really good chicken stock and chicken soup (Low blood, broken leg, and a stuffy nose — a triple whammy for that last week prior to transfusion, poor baby). We even used chicken feet in the stock — excellent for vitamins, minerals, and bone-and-ligament health! Recipe follows courtesy of Sally Fallon’s article,
Broth is Beautiful:

• 1 whole free-range chicken or 2-3 lbs of bony chicken parts, such as necks, backs, wings, and breastbones
• gizzards from one chicken (optional, but do it if you can!)
• 2-4 chicken feet (optional, but do it if you can find them!)
• 4 quarts cold filtered water
• 2 tablespoons vinegar (I used apple cider vinegar)
• 1 lg onion, chopped
• 2 carrots, chopped
• 3 celery stalks, chopped
• 1 bunch parsley

I also added 3 cloves of chopped garlic

Combine everything in a big soup pot except the parsley. Let it sit for 30-60 minutes. Heat it slowly and bring to a boil, removing scum that rises to the surface. Reduce heat, cover, and simmer 6-8 hrs. The longer it cooks, the richer it will be. About 10 minutes before you’re done, add the parsley. Strain and reserve in fridge until fat rises and congeals. Skim the fat and store in covered containers in the fridge for up to a week, and a year in the freezer.

I also like to cut the chicken bones into pieces to let the marrow out. (If your parts are too hard or frozen, simply cut them after they’ve simmered a few hours and are soft.)

Now you have a soup stock rich in vitamins, minerals, nutrients, and all the good stuff that you’d have to pay hundreds of dollars to find in supplements. Enjoy!

Love light to you and yours. And if things get rough or don’t go your way (or even if they start looking really bad!) remember:

“Don’t Push, Slide.”

Lov,e

Today, Adahlia received her 18th blood transfusion.

As far as time goes, the day was one of our worst, but as far as events go, it was perhaps one of our best. The time delay was due to a problem at the blood bank. It took them 5 hrs to deliver the blood after it was ordered, and since transfusions take about 4 hrs, we didn’t leave the hospital until 7:30 pm. Apparently, the first batch of blood had something wrong with it — it started clotting, or reacted with her blood sample, and they tried to fix it (?) but couldn’t. (The nurse wasn’t sure what had actually happened so her explanation was unclear.) Bottom line was that they had to start over after about 3 hours with a new batch of blood.

Contrary to what you might expect, what I learned from the experience has actually made me more confident in the transfusion process. Not only does the blood bank screen to match blood type, check for antibodies, viruses, and diseases, and irradiate the blood (to kill undiscovered pathogens and donor white cells, which could cause problems in her blood stream), they also actually mix a little of the donor blood with a sample of her blood to see what happens. If there is no reaction, excellent. If there is a reaction – antibody, clotting or otherwise – the transfusion is halted and they find a different donor.

This whole time, I thought that it was all a matter of checking each blood sample separately. You know, matching type O to O and doing separate screens for antibodies and viruses. I didn’t know they took the extra step of actually combining samples of the blood to check for compatability. Apparently, they do this – as well as the irradiation of donor blood – on a routine basis for all kiddos. (Adults don’t routinely get such deluxe treatment.)

Today’s IV was placed with just one poke, and Adahlia screamed and sobbed and struggled, but the tech did an excellent job and I was grateful for his steady hand and keen eye. Over the many hours that followed, Adahlia did remarkably, incredibly well. We read books, looked at plants in the attached outdoor garden, did laps through the halls, lounged around on her bed with her, and played with various toys. Not once did we let her crawl – we couldn’t, because of the IV in her hand and the armboard holding her wrist in line with her forearm. (If and when she bent her wrist it would occlude the IV.) Since shes not walking yet, no crawling basically meant she spent the whole day being held all day in a bed or in our arms. For her to be okay with that was no small miracle… and she really was okay with it. When it finally came time to remove the IV, she did not whimper or so much as give a peep of protest. She just sat on my lap and let me hold her arm out, watching the nurse peel back the layers of tape and remove the tube. She was ready to be done I suppose – but it was remarkable, even to the nurse, and quite a relief.

Perhaps my favorite moment was when Joe was carrying Adahlia while pushing her IV stand, and I was chasing them, growling and reaching like a tiger, and she was filling the whole hematology/oncology ward with laughter and delighted shrieks. Or maybe it was after reading her beautifully illustrated Animal ABC book together, when she kept cuddling up and collapsing into me, kissing me and touching her forehead to mine, rubbing her head against mine, like an affectionate house cat. It’s hard to say.

As expected, the doctors talked to us about steroids again, but I told them that we are simply not ready yet. First, because she just started her vaccines, and I don’t want to do them simultaneously. Second, because we are only willing to put her through the ordeal of steroids and all their potential physical-mental-emotional-cognitive side effects if it is her best chance at health and if the timing is right.

Today marked the 5th week since her last transfusion, with a Hb of 7.3 at the time of transfusion. It seems she is trending towards 5 weeks between transfusions now, instead of 4.

DBA is not a matter of simple genetics, if such a thing exists. You can have the gene(s) associated with DBA and express no symptoms. You can have full-blown DBA and have no genetic mutation.

That means there’s something else – or a lack of something else – triggering it. Like a cofactor. Or a hormone. Or a pathogen or toxin. Maybe its a combination, a perfect storm sort of situation. There are many reasons why a complex system, like bone marrow, might not be getting the proper signal to make adequate RBCs. Despite all our incredible medical advances, no one actually understands the complexities of genetic expression and intercellular communication.

What is known? Steroids help kids make an adequate number of their own RBCs so that they no longer need regular blood transfusions in 80% of cases. (Although no one knows why, because technically, if DBA is a genetic disease, steroids shouldn’t be able to make a difference.) Steroids are like hormones and hormones are like steroids. The preponderance of kids who experience a spontaneous remission from DBA are boys going through puberty. There are many plant, animal, and mineral herbal compounds that can act like steroids or have steroidal properties, and do not carry the mental-emotional, cognitive, and growth impairment risks of pharmaceutical steroids. Yet, an herbal approach is not without risk. The wrong herbal supplements (or the wrong dose) can actually worsen DBA (shortening the time between transfusions).

To my knowledge, we are the first to try to use Chinese herbal medicine for a child with DBA in an educated, controlled, and scientific manner based on traditional, classical chinese theory, while also testing the herbs every 4-6 weeks to make sure they are the right match to Adahlia’s current condition before we administer them (much like testing the donor blood to the recipient blood before transfusing).

I dont know if the Chinese herbs have the capability of healing a genetic disorder. I do know that Adahlia is an incredibly and increasingly bright, active, happy, and healthy child even when she is anemic, and that she is one of very few kids with transfusion-dependent DBA who can go 5 weeks between transfusions.

I think the Chinese herbs might be at play, here. I think we are not yet ready to gamble with steroids yet. I think we are on to something.

Adahlia is a mysterious creature.

This morning, while putting various items away, I set our brown Gemini baby carrier on the ground. It’s a fantastic device that can be worn to carry a baby facing you, facing out, on your hip, or on your back like a backpack. I haven’t worn her in it in awhile, opting for the 20 lb arm workout instead of carrying her. Well, she crawled over and held it up with a big smile on her face. Naturally, I put if on, slid her in to face me, and she folded into me, resting her head on me, wrapping her arms around me. Magic.

On our short, slow walk to the park, downhill (joe met us there to carry her back for me), I noticed how pale she looked. It’s funny, her complexion. Even after a transfusion, she just doesn’t have the flush to her cheeks and skin that most of us have. There’s a quality of emptiness, or something of an ethereal nature. Like she’s not quite fully here.

Because, well, in a way, she isn’t. She isn’t quite as tethered to her body as we are.

In so many traditions, particularly ancient Chinese, the blood carries the spirit. Think of “blood brothers” in various cultures and “blood branching” in certain military circles and the numbers of people who faint at the sight of blood, our obsession and fascination with vampires, and the various religious groups that forbid blood transfusion and you begin to realize that this isn’t some sort peculiarity. Yes, if you lose too much of it you die, but it is more than that. With all our understandings of molecules and chemistry, we cannot create synthetic blood in a lab. When we pledge allegiance, we describe “bleeding” a certain color or colors. There is something undeniably special, something “you” about your blood.

There are people who receive organ transplant who describe the sudden onset of strange dreams, or visions, that seem to be from a life they’ve never lived. They sometimes even describe new affinities, new feelings.

Later tonight, Adahlia looked great. Rosy cheeks, rosy lips, flushed skin.
Not doing so hot myself, and thinking longingly of the days when I could just run a bath for myself and lie in it, I decided to run an experiment. I discovered that a nearly 14-month baby will let you lie down in a bath. In fact, she’ll love it. Simply lay back, placing said baby on your lower belly, astride and facing you. Reach over for the foaming, organic baby soap and squirt some on your belly, on the nearest bath toy, and on her fingers. She will happily play and wash your belly, and her belly, for at least a solid 15 minutes. You just have to keep the soap coming. And if you’ve never had the pleasure of having your baby return the favor of washing you, I learned it’s just as precious as having her feed you!

And speaking of feeding, Adahlia fed our not-quite-tame, not-quite-wild squirrel friend today. She has been crawling up to me occasionally over the last couple of days with her stuffed squirrel in hand, showing it to me and pointing at the sliding glass door. I explain that we can’t make the squirrel come on demand, that she’s her own squirrel. And it had been weeks since we’d seen her.

Well, wouldn’t you know it but she showed up today. Adahlia has watched me hand-feed her peanuts at various points throughout the summer. The sighting of this squirrel never fails to elicit a series of excited chirping and pointing from Adahlia. I put the peanut in her fingers, and, braving both the horror of concerned mothers everywhere and child services, told her to hold it out, and held her hand as she did so (just in case, and more to protect the squirrel than to protect Adahlia.)

The squirrel was none to pleased to be being fed by a child whose energy was the equivalent of pent-up firecrackers, roller coasters, and whirligigs, but she did her part. She came forward, gently took the peanut, and raced away to bury it. We repeated the event several times, closing the slider to await her return while Adahlia sat on watch, the next peanut ready in her grasp. Adahlia even got to the point where she helped slide the door shut after the squirrel scampered off. Very cute.

Since I’m being long winded, I might as well say that I’ve been to the ER twice now in the last 2 weeks, and to several subsequent appts. In the 10 days between those ER visits, the hydronephrosis in my right kidney increased from moderate to just shy of severe. In addition, my left kidney is showing mild hydro again. (I feel pain it in fairly consistently but it only occasionally has water on it.)

So I am slated for surgery in 10 days again. I’m not super jazzed about going back into the OR, but Id also like to save what remains of my right kidney function, which took a blow from the previous episode. I’m pretty confident in natural medicines ability to improve the function of any remaining nephrons, but I need to get the thing drained before I can think about clarifying and tonifying it.

The doctors’ theory is that I have a blood vessel, a vein or an artery, crossing my right ureter that will probably, eventually, need removed and reattached in a better position. Because of pregnancy and breastfeeding, my hormones have relaxed my ureters and are allowing urine to build up in the kidneys. This is fairly normal to a very mild extent, but the swelling pushes the ureter against the suspected (not yet confirmed) crossing vessel on the right side, making drainage into a big problem.

Hence, right now, they are not worried about the left, but are rather willing to do some cut-and-paste work on the right. We compromised on a more conservative plan to have another stent placed (or as many as necessary, because they need replaced every so often) to drain and save the nephrons now. Perhaps, when I am done breastfeeding Adahlia, this won’t be a problem anymore. If it is, then we do the surgery.

Perhaps its crazy, because I am effectively electing to have multiple instead of one more surgery, but I’m just not willing to stop breastfeeding to see if that solves the problem. If possible, I want to keep breastfeeding through April, or the next cold and flu season. It’s important for healthy children, and I feel it might be vital to Adahlia. I’m also not willing to have the extended hospital stay, recovery time, and possible complications of a more major surgery right now. Adahlia still needs me too much. But, things change. We will see.

In the meantime, I’m trying the pregnancy regime that I did when i didn’t “know” it was kidney pain, which is lots of localized heat via a hearing pad at night, and swimming in a pool during the day. Back then, I think the motion and heat helped open and move fluid. It is my hope that it will take some pressure off the cells until the surgeon puts another stent in. Because its not the water that kills the nephrons, its the pressure of the water on the cells over time.

Anyway, back to Adahlia.

I wonder sometimes, about her need for transfusions. She hasn’t healed herself spontaneously yet, nor fully responded to the chinese herbal therapy. We have yet to get her nutritional panel complete and see if specific vitamin, amino acid, or cofactor supplementation might work, though that’s a near-term goal (once I get the water off my kidney and start feeling better.)

It may be that it is her destiny to receive many blood transfusions for many years.

If blood carries the spirit, then she is receiving into herself the experiences and feelings and “spirit” of hundreds of different people.

What kind of person emerges from being the recipient of so much human experience?

Amazing. Transformative.

Love and blessings to Adahlia and to you.

And in thanksgiving for this beautiful body, and beautiful, interesting, life.