… Building blocks of proteins, and therefore, our bodies.
One child with DBA found a cure through leucine (an amino acid) supplementation.
Earlier today, breastfeeding her, it struck me again how much we’ve struggled with keeping Adahlia breastfed. We’ve entered another final stretch before transfusion- it is clear she is very low in blood. She looks like a beautiful little vampire child, she is very easily upset, she’s a bit wobbler than normal on her feet, the last two nights shes awoken fitfully several times, much more frequently than normal, and just this morning I noted a remarkable decline in her desire and energy to breastfeed. After trying for a bit, she gives up, and frustrated and squirming, angrily tries to get out of my arms. At this point, knowing she hasn’t eaten enough, I hold her close to my heart til she settles and begins naturally to root around again with her mouth. This morning, we had to repeat this dance eight or nine times. It took over a hour, maybe two, to feed her what I’m gueestimating would be a single 15-20 minute normal feeding session, and I’m still not sure she really drank enough.
The time between naps is shortening; the length of each nap stretches.
I also just got her lab values in from last week: her neutrophils had gone down to below normal, as well as her red cells, which means that everything basically plummeted this past month. Even more discouraging, her reticulocyte count was only 7. (Normal is 10-90ish). Since November, she has almost always at least had a retic count in the low-normal range… I think last month it was 24. (Now, given her anemia, her retic count should actually be above normal, in the 100s, as her body should be getting itself back on track, making a bunch of her own RBCs as the transfused cells die. For whatever reason, that simply isn’t happening. So in her case, normal actually isn’t good enough. Below normal? Well…)
Anyway, amino acids. It’s occurred to me, that since cutting back my protein a bit due to my kidney issues, I haven’t really been careful to keep my protein intake up high enough, which is especially important since I’m breastfeeding. Its tricky because the appetite just isnt the same when the kidneys are struggling. Getting adequate nutrition has become a delicate balance. And, its occurred to me, it may be a balance I may not be doing very well, given that my heart is now having trouble too.
Since whey is so easily digestible, I’ve started doing whey supplementation. A couple scoops in milk, and it has the added bonus of being high in amino acids, of note, leucine, which might help Adahlia. So I drink a serving or two a day, which gives me 20-40 grams of protein. That, combined with more or less normal meals, should give us what we need.
I am also drinking Hawthorne berry tea, which is good for the heart, and taking fish oils again. We’ve added a couple herbs to my Chinese formula, too, to help stabilize and ground the heart. I think its working. I’m not really taking prenatal vitamins regularly anymore, which I possibly should, since I’m breastfeeding, because, well, I feel like I take so darn much already.
Adahlia took her Chinese herbs today, this evening, for the first time since the last post (sat afternoon). That’s not the sort of regularity necessary for healing with herbs, so I will see if maybe I can find ways to get her to be more willing. (Earlier I tried masking the herbs in puréed pear-blueberry-purplecarrot, but she saw through my subterfuge and waved away further offerings with a sweep of her hand.)
Today I walked with her to the park. It was gorgeous, sunny, with trees in bloom all around us. She puts her fist in her mouth and moves it back and forth to make higher and lower pitch babbling sounds. If I do it, she’ll echo me. We also screech at each other, like birds. 🙂 Its phenomenally wonderful.
She can climb up the full set of stairs now, and likes to practice walking by holding onto whatever’s nearby. She enjoys pulling herself up on my leg. Today, she actually stepped up onto the bottom drawer of the dishwasher and pulled herself up, holding onto the top rack. I swear, she’s a little mountain goat.
She likes to feed herself her baby food purée now… Making a big mess that then I carry her to the bathtub to remove. Sitting in the water in front of me, half in and half out of my lap, she reaches up to the faucet to let the water cascade off her fingers and palm. She leans backwards onto my chest and tilts her head back to look up at me with big eyes and a smile as I rinse her head and hair. I wrap her in a terry cloth towel and cover her in coconut oil before putting on her cloth diaper. I lie down with her and pull out her favorite book, “llama llama red pajama” — earning big smiles, chirps, and excited kicks.
You just never know with her. I’m guessing her Hb must be around 8, but this evening, when we got back from the park, she was full of energy. Her cheeks and lips even had a little color in them. And I breastfed her, and she drank fully and well, without problem. I marveled at that moment, at how lucky I am to still be breastfeeding her. To still have that relationship; to be able to give her that health benefit. It means the world to me. It is worth all the late nights and pumping it took to get us to this point, to have these moments of sweet connection.
When she drinks now, usually, like this evening, she relaxes. She kicks her leg around a little or plays absently with her tors or lays splayed out like a comfortable cat. It is enjoyable.
It didn’t use to be this way. She used to be tense the entire time, struggling as though fighting something. It was so stressful for both of us. And heartbreaking, for me, because i knew breastfeeding wasn’t supposed to be that hard for her. Really, she’s come so far emotionally– she is a vastly more relaxed, happy baby. When I think of how far she’s come in the past several months, slowly but surely unwinding, I know she must be healing.
For example, she used to never let me clean her armpits. She clenched and kept her arms close to her sides, as though protecting herself (Heart 1, a very important acu-point, is located in the center of the armpit.). Now, she lets me lift her arms and clean her armpits. I know it might sound silly amd not like a big deal, but it is. There are countless little improvements I’ve observed like that, things that let me know she is healing.
Tonight, I hope she sleeps well. I can hear her soft breathing; her right hand rests lightly against my arm, a buoy reassuring herself of her connection to my presence.
Do not be afraid little one. I am not giving up on you. And I will not leave you.