I'm not saying my daughter is, for sure, a dirt eater. I am saying she has hand, foot and mouth disease. This is a highly contagious mix of mostly viral, but sometimes a splash of bacterial, pathogens; a lovely tonic of germs if you will.
Ahn had this stippled rash on the tops of her feet. And she didn't feel like eating (!). Then, after our walk, I noticed she was hot, and her palms were stippled!
She was running a high-ish fever, and a mom on the FB support group mentioned her daughter on TPN having HFMD. Groan. Highly contagious and a semi-permanent IV are not a great combination. Not to mention my lack of familiarity with "regular kid illness." We will do everything short of solitary confinement during Ahn's contagious week, to try an keep Bo from getting this. I must admit, I'm feeling a bit defeated already.
Of course this all happens early Friday evening, the most perfect night of the summer. I have to be THAT PARENT who calls the pediatrician on call. Yeah, they're getting the big bucks to talk a microbiologist down about the unlikelihood that anyone can help a mostly viral, common childhood ailment {crazylady!}.
Good thing I get children's ibuprofen and acetaminophen for 20 cents. Cuz we are gonna be dosing around the clock. While I'm all about minimizing toxins for babies (hello, natural childbirth), there is a time and place for everything. And there is neither a time or a place where risking my daughter's brainfunction is ok. High fevers = bad news. So we will be alternating the liver toxic and the kidney toxic fever reducers (those are regenerative organs, the brain is not- so brain trumps filter organs), bleaching every solid surface multiple times, and germexing anyone coming within 100 feet of the house. Be warned.
Although she wouldn't eat a proper dinner, which the doctor kindly DID warn me of, she did eat THREE popsicles (ok, it was frozen pedialyte, that's ok; she can be mad and traumatized when she finds out in middle school). And with her fever reduced, she happily went to bed.
The end!
Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Friday, June 22, 2012
Sunday, June 10, 2012
Wedding Bliss
We missed the wedding. Well, the maniacs and I did. Jose went.
Then we all went to the reception long enough for the lovely couple to register our presence and for baby Ahn (who really isn't a baby anymore) to grab the berries off the bite-sized cheese cake hors d'oeuvres, eat all the grapes trimming the brie, spit out the brie that I fed her, dance in front of the cool jazz pianist's awesome retro-y keyboard, get hot, sweaty, flushed and cranky, and smell the pot roast under the heat-lamp; namely 30 minutes.
It took the better part of Friday business hours for the nurse to pack Bo's things. She thought all she'd have to do was construct his bag, then I gave her a list of about 200 items to pack that were all Bo-medical related, and she was impressed. Like it isn't enough of a PITA to go anywhere with a pair of maniacs. WE insist on going every where with them, in spite of the 200 item checklist for Bo.
I love weddings.
Bo slept in the kids room (normal enough), Ahn slept in the master bedroom in her pack and play (she cannot be trusted, and must be confined), we slept on the lumpy pull-out (which is apparently superior to sleeping on the couch in its couch form) because we are sleep nazi's. As a parent, wife, homemaker and home owner, I let a lot of things slide. I don't cook, I barely clean and the house generally has the appearance of being ravaged by herds of feral capybara. But those kids WILL sleep undisturbed. They need to get smart enough to find paying jobs and move OUT of my house.
Every one is sleeping in (which means 9:20AM- the toddler's equivalent to sleeping till 2PM as an undergraduate). I've made a pot of coffee, updated the blog, run a load of laundry and started filling up the dishwasher. I only complain about not brushing my teeth because now I am starving, but my toothbrush is in the master bathroom. And I'm not about to wake up the tazmanian devil.
I love weddings, and now, I've discovered, I love Traverse City (because it has a disproportionately large independent bookstore for a town of its size).
Then we all went to the reception long enough for the lovely couple to register our presence and for baby Ahn (who really isn't a baby anymore) to grab the berries off the bite-sized cheese cake hors d'oeuvres, eat all the grapes trimming the brie, spit out the brie that I fed her, dance in front of the cool jazz pianist's awesome retro-y keyboard, get hot, sweaty, flushed and cranky, and smell the pot roast under the heat-lamp; namely 30 minutes.
It took the better part of Friday business hours for the nurse to pack Bo's things. She thought all she'd have to do was construct his bag, then I gave her a list of about 200 items to pack that were all Bo-medical related, and she was impressed. Like it isn't enough of a PITA to go anywhere with a pair of maniacs. WE insist on going every where with them, in spite of the 200 item checklist for Bo.
I love weddings.
Bo slept in the kids room (normal enough), Ahn slept in the master bedroom in her pack and play (she cannot be trusted, and must be confined), we slept on the lumpy pull-out (which is apparently superior to sleeping on the couch in its couch form) because we are sleep nazi's. As a parent, wife, homemaker and home owner, I let a lot of things slide. I don't cook, I barely clean and the house generally has the appearance of being ravaged by herds of feral capybara. But those kids WILL sleep undisturbed. They need to get smart enough to find paying jobs and move OUT of my house.
Every one is sleeping in (which means 9:20AM- the toddler's equivalent to sleeping till 2PM as an undergraduate). I've made a pot of coffee, updated the blog, run a load of laundry and started filling up the dishwasher. I only complain about not brushing my teeth because now I am starving, but my toothbrush is in the master bathroom. And I'm not about to wake up the tazmanian devil.
I love weddings, and now, I've discovered, I love Traverse City (because it has a disproportionately large independent bookstore for a town of its size).
Friday, June 8, 2012
A Perfect Birthday
I'm not bragging on myself when I say we had the perfect birthday party. As you know, the most valuable takeaways from my adult life all involve doing less: "it's not your problem, Kinn" (?!... :)), "if it is not your (company's) core competency... outsource," and something snarky about "superfans" and inappropriate emotional investment. So we had a local artisan craft cakes, my BIL made the pinata, my SIL and MIL did so much prep work it take its own blog to document.
But I digress.
What I wanted to say was, Happy Birthday, Bo! You have become an awesome little kid. Your ridiculously long eyelashes and super velvety soft skin still make me think you are a baby, but your insatiable appetite for knowledge and your supernerdy proclivities challenge me.
What _is_ a Mandalorian Jetpack, anyway?
We had a handmade robot pinata, chocolate leaves on the cakes, games and children, family and chosen family, babies and beer. The sun dappled the lawn, and it was warm but not hot.
Baby Ahn got to celebrate her birthday a little early, and she loved running around with all the other littles.
I look at you, Bo, and I cannot imagine the black hole that would have engulfed my head had you not lived. The intense joy and privilege of parenting you is a result of that moment, when I was with you, alone in our hospital room, as you were dying. And I looked at you and thought, I don't know you yet. They say a mother will give up her life for her child. I don't know you yet. But I need to. So I am going to fight with everything I have to give you the time to become. To be. I don't think it was love, at that point that drove me. I just wanted the chance to get to know you, and for you to remember, even if it was just the slightest impression, me. You can't go, yet, I thought. We haven't even started. You won't remember me. You will only remember pain and fear. I want you to remember being loved and cherished. We need more time.
The longest-lived intestinal transplant patient died, recently. She was 22 years post transplant. I look at your face and think, 22 years is not enough. That is not good enough. That is not long enough. It's not long enough, dammit!
For now, you are running and jumping, reading and rioting, exuberant, defiant. I hope you know that we celebrate every day you are here. We are so blessed that we got to keep you here by our sides, just a little bit longer.
But I digress.
What I wanted to say was, Happy Birthday, Bo! You have become an awesome little kid. Your ridiculously long eyelashes and super velvety soft skin still make me think you are a baby, but your insatiable appetite for knowledge and your supernerdy proclivities challenge me.
What _is_ a Mandalorian Jetpack, anyway?
We had a handmade robot pinata, chocolate leaves on the cakes, games and children, family and chosen family, babies and beer. The sun dappled the lawn, and it was warm but not hot.
Baby Ahn got to celebrate her birthday a little early, and she loved running around with all the other littles.
I look at you, Bo, and I cannot imagine the black hole that would have engulfed my head had you not lived. The intense joy and privilege of parenting you is a result of that moment, when I was with you, alone in our hospital room, as you were dying. And I looked at you and thought, I don't know you yet. They say a mother will give up her life for her child. I don't know you yet. But I need to. So I am going to fight with everything I have to give you the time to become. To be. I don't think it was love, at that point that drove me. I just wanted the chance to get to know you, and for you to remember, even if it was just the slightest impression, me. You can't go, yet, I thought. We haven't even started. You won't remember me. You will only remember pain and fear. I want you to remember being loved and cherished. We need more time.
The longest-lived intestinal transplant patient died, recently. She was 22 years post transplant. I look at your face and think, 22 years is not enough. That is not good enough. That is not long enough. It's not long enough, dammit!
For now, you are running and jumping, reading and rioting, exuberant, defiant. I hope you know that we celebrate every day you are here. We are so blessed that we got to keep you here by our sides, just a little bit longer.
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