Today, Adahlia is officially 4 weeks, 2 days since her last transfusion.
I had a different post half-way finished — one I will still post, because its full of lovely, general updates on Adahlia’s life — but I had to post this one first:
Today (Weds, Apr 30), we had Adahlia’s Hb checked via finger poke at her pediatrician’s office. It was 8.3. Last Friday (Apr 25), it was 8.2.
That’s right. Her blood counts are not only holding steady, they may even be increasing!
And though its a little too early to say that with confidence (there is a degree of error in any blood test, so you have to allow that the true number could be either higher and lower), you can certainlpy say with confidence what her hospital nurse said, which was:
<GASP!> “She’s holding!”
But I must say it, because it is very important to my own heart to say it:
This is the first time EVER — I repeat, FIRST TIME EVER — that her Hb has gone up.
EVER.
Seriously, EVER!
I mean it.
EVER!!!!
…and that’s HUGE.
Hooray!!!!!!!
I cannot express what it would mean to me if she didn’t have to have transfusions anymore. If she made her own blood. It would be, quite simply, miraculous.
So, how did we celebrate? Well, of course, we cancelled the transfusion we had scheduled for this coming Friday, and pushed it out another week. This is the second time in a row I’ve been able to cancel her transfusion (she was originally supposed to be transfused this past Monday, which would have been 4 weeks.) Let me tell you, having to hold her and allow the hospital to give her an IV every month, that nothing sweeter comes to mind than getting to cancel a transfusion… unless of course, its cancelling two transfusions.
So back to celebration. Well, it happens to be an incredible day here in Portland — sunny and 80 degrees. It being Wednesday, we went to the Red Yarn concert, held at 10 am, by donation, for kiddos at Village Ballroom. She danced, made friends in the funny little way toddlers make friends, and got to pet and feed a couple puppets (a snake, a groundhog, and a squirrel). After, we came home, I pushed her in her backyard swing for awhile, we packed a picnic, and then we rode to the nearby park for a lunch of peanut-butter on cinnamon-raisin bagel, avocado, cottage cheese, and raspberries. We played on swings and slides and she took off her shoes so we could spin barefoot in the grass. Then we rode home again, taking a circuitous route because she told me she wanted more bicycle riding, and then now she is taking a nap on the bed, in all her naked-baby glory (except, of course, the necessary diaper.)
I could tell you all sorts of stories about how Adahlia loves bicycle riding. She has a front-seat, mounted on the handlebars of my bike, which is wonderful because it allows her to see and to feel a part of the big-people action. The seat is called an iBert and its fabulous. It even has an unobtrusive little steering wheel so she can (pretend) steer. But what is even better is when we take a turn – I tell her: “we’re going to take a right turn… put your arm out with me!) and she makes the signal with me. Now, to be fair, her “left turn” and “right turn” look pretty much the same. But its still wicked cute. She absolutely LOVES riding the bike. And she LOVES wearing her Bell Faction helmet. Last night was our first ride, and I have a feeling we’ll be doing it daily.
So, I could tell you stories. But I’ll save those to say simply that we are so happy and hopeful that this is a sign of Adahlia’s bone marrow kicking in to make its own RBCs. We are doing lots of increased-intensity alternative and natural therapies for her, and of course giving lots of love and prayers.
Thank you so much for all your continued love, prayers, light, and energy. Please continue to see her in vibrant health and wellness!
Love and light to you and yours.