Last Thursday, Adahlia received her 17th blood transfusion.
It was a memorable one. We arrived at the hospital on Wednesday. There were new lab techs, due to complete turnover in the phlebotomy lab. (Our favorite phlebotomists have mysteriously quit! It is a huge loss. Those ladies were Jedis with needles… sometimes when they stuck her, Adahlia didn’t even cry. They were with Adahlia since she was just 7 weeks old, and watched her grow, and gave her presents, and loved her. And so, Dorenbecher phlebotomists… where ever you are… we love you & wish you best of luck!)
Anyway, long story short, necessary labs weren’t ordered, the stick was terrible, and the IV tech then failed – twice – to get an IV in. In her defense, poor Adahlia was a bit dehydrated. She had vomited twice the night before, which was a new event for her. She very rarely spat up as a baby, and this was the sort of “I’m-clearing-everything-out-of-my-stomach” projectile event that speaks to food poisoning, or viral bug, or something else that leaves us grown-ups curled at the base of the toilet, moaning, for the duration of the night. As we cleaned her and the bed up the second time, she simply passed out in my arms, limp.
For the next couple of days, she had extremely foul-smelling watery stools. So, on Thursday, in addition to her blood, she also got some fluids and a stool test for bacteria. Her GI distress was a big factor in why we left the hospital Wednesday, and chose to come back on Thursday for the forgotten blood test and transfusion. Luckily, the IV tech on Thursday was a champion, quick-sticker, but he had to do it in the top of her hand (the back of her hand) because of the needle sticks in her arm on the day prior, and, if you’ve ever had an IV in your hand, you know it is rather painful. It goes without saying that it is so, so, tough to have to help hold your baby down while she screams, cries, and murmurs, as Adahlia does, to the heavens for help, and it took the tech a long time to tape the IV down and wrap securely. It was hard work and I am glad I was able to be present with her through it, to hold the space for her and offer her comfort.
After her IV was placed, we waited for two hours for the blood, and then, when it arrived, the nurse informed us that the Red Cross had sent expired blood. Unusable. So they had to order new blood. It made for a long, long day, but I was very glad that they caught their mistake before administering expired blood to her.
Happily, after the IV was placed and despite the length of our stay, it was one of the smoothest transfusion days we’ve ever had. Adahlia and I read books, went on walks in the garden, and played with blocks. It was also our very first transfusion without Joe with us. He has been phenomenally dedicated to her, and it upset him not to be able to support us this time. We missed him, and we managed fine, and she was very happy to come home that evening.
I also met my first, and only other, DBA family that I know of in Portland. (!) Steroids did not work for their 18 month old baby… meaning that they did not help her make her own blood. They did, however, make her face swell, and they made her extremely irritable for the duration of the trial. Luckily, they did not do any apparent lasting damage.
I am not willing to try steroids… yet. This year, I have plans to start her immunizations. I don’t wish to do them at the same time, as I feel it would overload her body too much. I am also still of the belief that it may be possible to get her body to make its own red blood cells using chinese herbs. First, we have to finish taking the “clearing” herbs that her body is reacting to, saying it needs. Then, we can try the “building” herbs, to help it make its own blood.
Adahlia only went 4 weeks since her last transfusion, instead of 5. There are many reasons why this could have happened. It could be that the amazing gift of the days we spent in Hawaii – in the sun, heat, and salt water – were extremely beneficial to her. It could be that there is something toxic in our house that she and I are sensitive to, which we weren’t exposed to while we were away, and we did spend a lot of time outdoors. It could be that chlorophyll is too much for her system, and not beneficial to her. (We were taking a break from it the entire time that she went 5 weeks between transfusions, but had resumed it the first 2 weeks of this past period. When then stopped using it because it appeared to me that she was looking pale and sickly rather quickly, and I wondered if it was due to the chlorophyll.) And, it could simply be that the transfused blood was older, closer to its expiration date, and older blood cells wear out and die quicker. It is, unfortunately, impossible to know at this point.
But, out of caution, we have decided to stay away from the chlorophyll for right now, which we were primarily doing as adjunct therapy to help her body eliminate iron, anyway. This month, then, we are only doing the chinese herbs and liquid fish oil as supplementation. Her iron is still fairly low, at only 536. I do not know if the chinese herbs are helping to keep her iron down, or if her body is just very efficient at eliminating it. But, so far, we are not in need of iron chelation, which is good. She did show elevated liver enzymes, which could speak to liver damage from iron overload, but could also have been due to the potential gut infection wrecking havoc on her digestion. So, we are also doing some infant probiotics to help with her digestion.
As far as my health is concerned, we don’t know what’s going on with my kidney. It feels much better than it did when I was in the ER 9 days ago, but I would be lying if I said there wasn’t a sensation of dull ache and heaviness in it at times. I did adjust my own herbal formula with the hopes of helping it to drain. There are times it feels fine and times it feels like there is fluid in it. If it doesn’t drain out by the ultrasound scheduled this week, I will need at least one, if not a two-step, surgery to address the cause of the obstruction. I truly hope it doesn’t come to that, because surgery affects my ability to care for Adahlia, as well as the rest of my life. But, though I can do my best with herbs, mild exercise, and reiki, the situation (like all of life, for all of us, truly) is entirely outside of my control. We do what we must, and, if we are wise, we find enjoyment and love in it.
I am very happy to let concerned friends know that both sets of Adahlia’s grandparents stepped forward in a huge way to help us out financially. We will be able to remain stable, in this house, through December, which is important if I will be needing surgery soon. We do still hope to move as soon as we are able, because the rent on this house is simply too high. (And there is that possibility of there being something toxic in the environment, which isn’t a very likely possibility at this point, but still remains.)
Adahlia does love this house, though, and I’m so happy she’s been able to enjoy it. Just today, she pointed at a murder of crows flying past the large picture window, saying, “bu! bu!” as they flew overhead. Over the last few weeks, we’ve enjoyed picking figs from the large fig tree in the backyard. Carried in my arms, she points to the tree to let me know she wants to pick figs, and we look up into the branches and see what we can find. The season is pretty much over, now, but it was wonderful – and delicious! – while it lasted.
Adahlia has been in an incredible mood for the last several days – she wakes up super happy. Even when she was low in blood, on the morning of her transfusion and after vomiting in the night, she woke up smiling and eager to play. She “talks” to me until I wake up, sticking her face into mine, like a cat, prodding me gently, pointing at the paintings on the wall and “telling” me about them, crawling around in circles, and then pointing at the windows, as if telling me that the sun is up and its time to get up. I adore sleeping with her. Even when she puked, I was glad we co-sleep, because she was so scared by what was happening to her, and I was so glad I could be right there when she was choking and going through it. Its so wonderful when she rolls towards me and cuddles under my arm, to be able to kiss her head when she starts to cry out while having a dream, and so amusing when she flings herself across the bed, and turns herself in circles.
Co-sleeping is, in a word: awesome. Highly, highly recommended!
Adahlia LOVES books. All day long, we read books. She points to animals and kisses her favorites. She holds her hand up to say goodbye to Mama Llama after Mama Lama tucks Llama Llama Red Pajama in for the night. Her favorite book these days is Lion & Mouse, an illustrated book by Jerry Pickney that has no words, only gorgeous illustrations. She has taken to “reading” it and other books to me, pointing at various animals and actions on the pages and authoritatively saying: “bu. bah. beh.” as she turns the pages.
She waves at passing cars when we’re out and grins and bounces when I dance with her or sing for her. She has figured out how to put her feet into her pants and pull her pants up to her knees. She also can get a sock halfway onto her right foot (the left foot is tricky!) She “talks” to us all the time, eats finger food, follows us when we crawl in front of her, and tries to get us to chase her. She understands when I tell her that we are going home, or going to take a bath. She can put the circle and octagon into their correct places on her puzzle board and happily pounded away on her xylophone the other day. It was the first time that she purposefully struck it in a coordinated way, and seemed to be enjoying the music she was making.
When we see a dog, she points and barks, saying: “arr!-arr!” (She knows this is the sound dogs make because I say the name of the animal and also make the sound when I read a certain animal book to her.) She LOVES petting dogs. Yesterday, together, we hand-fed the squirrel that comes onto our back porch to beg for peanuts. She understands the word “squirrel” and looks to the sliding back door when I say it. She lifts her hand in “hello” to people wherever we go and observes them carefully, looking them up and down, from head to shoes and back again, as though taking in their outfits.
Sometimes, she will poke a person she finds extraordinarily delightful on the tip of their nose. She gets very, very frustrated when she cannot master something quickly, and gets even more frustrated if we try to help her when she’s trying to do something herself. She refuses to eat baby (pureed) foods, preferring to try anything that we are eating, even if she can’t eat it due to a lack of teeth, and can only suck on it. (She has 6 amazing teeth now. Her smile is brilliant.)
She still loves hiding behind curtains and under blankets, and giggles and shrieks with joy when I act like I cannot find her, and when I sniff loudly around her, as if I am a wild animal looking for her. She makes a little howl like a wolf (“arrroooo”) when she sees pictures of wolves or wolf cubs and when we play with her wolf stuffed animals. She will crawl over to us with books she wants us to read, or stuffed animals she wants us to kiss and animate for her. (She has quite the collection between my old stuffed animals, her new stuffed animals, gifts from relatives, and gifts from various hospital visits.)
Adahlia loves cuddling and swinging and spinning and be carried and well, doing just about anything that we are doing. She is absolutely, insanely beautiful and the most wonder-filled, curious, and attentive individual I’ve ever met.
Tonight, in the bath tub, was the first night I could tell that she was really having fun with the foaming, organic baby soap. We squirted it on her plastic toy animals and she examined its consistency between her fingers. She rubbed it between her hands and washed it away, and held out her fingers for me to squirt more onto her hand. Sitting between my legs, she smoothed layer after layer of foam onto my right leg in happy, circular patterns … and surely, my kneecap has never been cleaner!
Also, today, a huge milestone. We were brushing our teeth together – I was sitting on the floor, and she was standing, holding onto a pull-out bathroom drawer. She let go, and stood. She bounced slightly a few times, almost like how a diver bounces before his big leap into the air. Then she took a small, but distinct step forward, barely lifting her foot off the ground. It was almost like a shuffle-step, the bottom of her foot grazing the top of the rug. She did it again, with the other leg. Then she stepped forward a third time, reaching for my shoulder, and grabbed on. Her first steps! They were truly shuffling, baby steps; she has taken larger, more “distinct” steps while holding onto something for support, but they were, in fact, her first true, free-standing steps. Hooray, Adahlia!!!
Its been a busy time.
Its also been an incredible few weeks of reconnection with myself, my strength, peace, and joy. Doing reiki with myself and Adahlia, things shift, open, and are filled with light. As always, we never know what is around the bend, and there is a lot of uncertainty, pain, and stress. Yet, we have found ways to thrive in it, the sadness and grief and fear are replaced with joy and contentment, regardless of health, finances, and hopes. We are getting better every day at making the most of each moment. We are so blessed to be here. Our lives are the opportunity of a lifetime.
How would the world change if everyone lived with the knowledge that they are capable of filling themselves with light? If they were empowered with the knowledge that they can use that light to heal themselves? If they then carried it forward, and, like Adahlia, shared it with others, whether or not they were looking, and whether or not they responded, through their open palm?
What does it mean to heal? Can one heal oneself and still have a life-threatening condition, or die? If so, why? How, then, does that change how we live?
Thank you for being with us in this journey, and supporting Adahlia and our family in your hearts, thoughts, and prayers.
Love and light.