Sunday, January 30, 2011

One more thing that is all my fault.

I put away the Childrens' Ibuprofen.  And the Children's Tylenol.  It is all my fault. that Hannah got sick again.

Every time I put away the purple stuff, within three days someone gets sick.  I tell myself it isn't so, that only coincidence could produce this result.  But time and time again I scoff in the face of anecdotal evidence and I put away the fever reducing medicines, only to have someone develop a fever in pretty short order.  I don't really believe in this kind of magical thinking.  My mother does, I know, and I've felt some pull toward it in my life certainly, but of course it makes no sense at all.  When I was a much more angsty young woman in my teens and early twenties, driving at night, I would always notice when for some reason streetlights would turn off as I drove under the light they cast.  I'd notice the pattern and then be unable to not notice.  I'd wonder if my ions were wrongly polarized or fate had a plan.  I would think back to when I'd learned that one developmental stage of childhood has a child wonder if she or he is the center of the universe - that they are the only real part and everything else is just a construct.  Certainly I was relieved to know I wasn't alone to have had these thoughts as a child, and toasted my good fortune in not being mentally ill or stuck in that phase (I probably toasted with quite a lot of cheap beer).  Perhaps I even drunkenly discussed existentialism, even though I hate philosophy.  I might have had deep thoughts, or just thought I did.  But how is it that now, at forty three and well encumbered with relationships with people that really bring home the concept that real is indeed real, how do I now believe that whenever I put away the Ibuprofen, my kids will need it again?  And even if I could make myself sick with my thoughts how am I making my children get strep or viral illness?

I live in a one hundred year old home.  Nothing about my kitchen is spacious.  My counters do not need piles of things that never go away.  OK a knife block, a hodge podge of long handled utensils crammed in a somewhat attractive but mismatched jar.  The phone.  The pile of baby bottle parts and binkies that will finally go away soon.  Hannah's carnitine, and syringes to measure it.  My vitamins and supplements, lest I ignore them for months at a time.  I don't need medicine for potential use to remain out and at the ready.  We don't need it everyday.  We possibly need it for five days at a time, longer when the girls split their illnesses up rather than share them.  I don't want the bottles to live there.  So I hired the most powerful sorceresses I could find to cast a banishment spell with their sparkly pink wands.  It better work.  I'm keeping the bottles on the counter until next month, though, just in case.

Tuesday, January 25, 2011

Day three and counting

House date (I hate star dates, space bores me silly, except in Galaxy Quest): January 25, 2011

Today is day three of Hannah's third illness in two and a half weeks.  We started a few weeks ago with the delightful virus with a gastro bonus feature, had five days of normal eating and living, then Hannah's first bout with strep throat, probably courtesy of big sister who gets strep if someone talks about it, and after six days on antibiotics she got sick AGAIN.  Like God, she was supposed to rest on the seventh day but maybe because she can't read yet, she did not get the memo.  This would be your basic streaming nose and eyes, coughing (OK, hacking), high fever kind of virus.  Bonus feature add on: hands, lips, and nose turning blue when she either is cold or feels cold despite actually being 105 degrees.  Lest you think I am a crappy mother, I will tell you I asked Metabolics about the blue hands the first time it happened, when she was not actually even sick, and they sent me to Neurology, who said it was not CP related since it hit more than her affected side and so it must be metabolic, who again denied coverage.  My regular old garden variety pediatrician says it is vascular and inexplicable and not to fret.  A win for the GP!  Inexplicable!  Woo-hoo! But I digress . . . The strep was sort of anticlimactic, Hannah had a fever but never considered reducing her food, she was too busy catching up from the previous weekend.  Strep was small potatoes in her mind.  We were concerned she could get sick again without having even finished the pink stuff but a check yesterday says no UTI, no ear infection, just a suspected bone chilling, lung shattering, neck baking, snot making virus.  On the upside, the only body fluid currently distributed about my face and shirt are all snot or spit/snot related.  Hannah is napping right now, and just coughed so hard she said "Owie!" in her sleep, which is cute but distressing.  So far, in order to get her to consume enough calories to fuel this fever I have used the following: Polycose added to milk or in juice (a blend of secret not sweet sugars that have both quick and longer acting molecules to add calories) which is new to us, I have served almost all of her most favorite foods (many of which elicited no response at all, including pot stickers) I have squirted syringes of liquid in her mouth while sleeping as well as inserted bottles of milk until she remembers she doesn't want it, I gave her home-made buttercream frosting (hardly painful for me at all) and tonight I will try The Soup of Healing and the Rice of Togetherness (egg drop soup from my favorite Chinese place, which I swear really does have healing properties, and we need the rice of togetherness because if Lord Honey fails once more to understand my dosing instructions about Hannah and fever reducing medicines this family will have a reduction in force, effective immediately).  I just remembered marshmallows, and that I could perhaps offer her two big fat ones right before bed so I could feel I could safely sleep though the night.  I might make some brownies and frost them with buttercream frosting.  For lunch I made tea sandwiches (she wolfed them down the last time I made them for a party) and she managed to eat one third of the triangle which was 1/4 of a full sized sandwich minus crusts.  Success!  But I will please Claire with my tea sandwich efforts, and that is worth something. 

So a colleague in my office emailed me to ask how Hannah was and I gave her the update.  She wrote back how the coughing could make a parent feel so helpless.  I told her how empowered I felt when I got the child to eat nearly 1/12th of a sandwich.  She thought it sounded like I'd have Hannah mended soon.  I pondered whether I knew anything at all about any of this.  I decided I felt more like a fat old Idaho salmon, trying to get upstream to do my duty but not having a fucking clue how to work fish ladders when I don't have hands or feet. 

After trying to draw you out of your shells I had planned to be bitingly funny, poignant, witty, maybe even worth forwarding.  Oops!  Someone is calling "Mooooommmmyyyyy" so I must fly.

Edited: updating with the news that she can now cough enough to lose her lunch.  Lovely!

Sunday, January 23, 2011

Hello, I love you, won't you tell me your name?

My darling readers, lurkers, and wanna be friends.  Own up now - who are you?  Who, who, who who?  OK, my music references just dated me but I was not old enough to get high when those songs came out, I swear it.  I only inhaled in a room full of older people.  And it doesn't matter since I work for the man, hell, I AM the (wo)man.  Those songs hung around for a while, though, so they pop back up in my late night mind, interspersed with The Knack and The Cars and the The Fall and XTC and some crazy LA punk rock that I am sure you all know and love, like X, Fear, Black Flag, the Flesheaters.  Lyrics still go by in my mind that would possibly unhinge both my mother and my daughter simultaneously.  Heh-heh, no one needs to know these things but you guys . . .

And really, who is the 28th Follower?  Sir?  Are you here because you saw that I knit, albeit slowly?  I am about to finish projects that are more than a year old, more aged than many fine cheeses, sure, just keep a look out for it.

Some of you have joined during a time when, if you were amongst my first followers I would stalk your blog, would have commented away and tried to make you Follow me forever, but now? My small hope is to try to leave a comment for anyone who leaves me one (unless Arby's post is overly conservative that day and then I could come back later because he has to still love me as he wants me in the arms of Jesus and he can't stay away).  Someday I will answer my own comments here, because that always feels so much like a cosy cuppa tea sort of moment. The dark reality is I can't always figure out how to find your blog in the follower zone - sometimes it works and sometimes it doesn't.  I never I said I had tech skills, I only promised doom, despair, hilarity, sickness and health.  And debris sweeping shoes.

So if you want to engage a little more, feel free (but leave directions, OK?)

Monday, January 17, 2011

She's my tiny dancer

I can't write too much about this or I risk bawling my eyes out with pride, joy and all that stuff (my poor daughters do NOT understand why I cry when I am happy but I imagine they'll begin to understand after they get through puberty).

One of the reasons I hoped to have girls was the idea of taking Mommy-Daughter dance classes, after a dear friend of mine told me of her fond memories of taking dance with her mom. My mom would never have done such a thing with us, first because she tips over a lot (see a pattern?), second because she was too busy going to church to do a lot of activities with us, and lastly because it would have cost more money than she cared to spend. I did a few of these classes with Claire when I was on maternity leave with Hannah and then Claire was able to get dance classes at her day care, and now it seems the parent/child class options are limited to kids under age three or so. The Angel of PT recommended that I get Hannah into a dance class and I thought it would be a great fit because Hannah is really motivated by music, likes to dance when we play music or dance videos for her on YouTube, and I thought she'd pick up on how much I enjoyed it and that would help get her off to a great start. It may be a little harder to get her Dad to fill in for me as needed compared to sending him to parent/tot class at The Little Gym but I thought having a non-therapy based movement experience would be worth any hassles or price. It was a little harder to find a Saturday class with space and at a location that would work, but we signed up at the University of Utah's Virginia Tanner Creative Dance program. At first I was encouraged to sign up for the dancers with disabilities class (a wider age range of kids with all manner of disabilities for a reduced price of just $25!!!) but I was sure she'd benefit more from being in the regular class with all peers her own age. I struggle with putting her in situations where she might feel like the thing she is asked to do is out of her skill level, and I've seen that she just won't do what she is not comfortable with, such as using the bars at the Little Gym, but I thought dance would require less use of her right hand while providing more opportunities for other kinds of learning, since she loves music and dance so much already.

The tutu was my idea since modern dance only requires comfortable clothes but I suspected many other girls (and boys as it turned out) would have tutus. She has never willingly let me put it on before just for fun, and didn't before class, but once she got the idea of it she kept it on all day. We immediately liked the environment, and I was delighted that she showed no inclination to shyness or refusing to follow directions at the outset.

Huge success!

Checking out the studio

Each new activity involves the kids coming back to the carpet for a little circle time while the teacher introduces the next activity

Hannah volunteered ("ME!") to be the student to demonstrate the "snow blanket" moves

Why yes, I can stand on my right foot.

What's next? I'm ready.

The only bad experiences were that three times when all the kids were dancing (running) about, someone would either crash into her or come close to it and she easily toppled over but she just looked surprised and got up and kept going. When the kids were asked to go to the ballet barre and hang on like a monkey she wouldn't even try that, since I think she knows she can't hang from her weaker hand, and during some circuits of the room she would cut a few steps and jump in ahead of the leader. When we were flapping like a bird she didn't use her arms like wings but actually, I'm not sure all the other kids did either, I guess it takes experience to apply your imagination in the way you use your body. But mostly, she was willing to do follow the leader (a skill I didn't realize was included but which may come in handy), she could two hand the props we used like scarves, or pom-poms, she listened during the story at the end, and she actually volunteered two different times to be the student to model the next activity with the teacher. Holy cow did that do my heart good - to see that her confidence was right up there with all the other kids. Multiple kids had moments of crying or a case of the "I wanna" blues, but Hannah was cheerful and responsive and carefully observing everything around her. She is probably less verbal than most of her peers but since her receptive language is so awesome that when the teacher said "who wants to tiptoe around the bubble circle?" then Hannah could easily get in a "ME!" ahead of all the others. One unexpected bonus was all the clapping - that fisted hand doesn't really want to open for things like clapping, but it might - either to applaud another dancer or to keep time with the piano meant she used her right arm far more than I would have counted on and certainly enough to build muscle strength.  And thank all that is holy, not one person asked me about her gait or her hand taping or anything that would make me cry.  Win!  The one and only difficulty we had was getting her to leave the place, which required trickery, bribery, a distraction with a drink from the water fountain, and a pine cone offered to her by one of the dads from our class, who she'd been flirting with earlier.

I am ashamed to have to tell you that my efforts at the tiptoe steps, getting up and down off the floor repeatedly, and spinning left me with sore calf muscles.  If a toddler dance class makes you sore, you probably need to work on your fitness level yourself, but still . . . WIN!  She shoots, she scores!  We'll be back.

Wednesday, January 12, 2011

She's better, we're better, wouldn't you like to be better too?

So Hannah did in fact need to go to the hospital Sunday evening when she got up from a nap, turned purple with cold, then cooked up a 104 degree temp in the blink of an eye, and I knew that dehydration needed to be beaten.  Only two little results on a big broad metabolic panel showed anything funky going on, which would be stopped by the dextrose IV solution we were given.  I was sort of concerned by the size of the IV bag, and that if we had to wait to absorb all of that then I had not brought enough changes of clothing with me.  Ultimately they had us fluff up with dextrose/saline, using maybe a tenth of the bag, and the ER sent us away to follow up with the metabolic clinic the next day, which upon seeing Hannah seemed frankly surprised I was concerned, pronounced her as healthy as a person with MCADD and raging diarrhea could be, gave no answer whatsoever as to why the child sometimes turns purple and sent us packing.  Back at home we changed clothes a lot and tested the retention capacity of size 4 Kirkland diapers (poor when challenged by power pooping)  I have resumed my role as forensic scatologist looking for anything remotely turdlike in the diapers of disaster so we could at least tell ourselves the er, um, end?, was in sight.  It was.  A lot.  We saw a lot of that tiny behind, the laundry room, and diaper Genie.  And I spent some time wondering why diarrhea is spelled that way: doesn't the extra "r" seem excessive? Is that the point? It is meant to be a run-on word?

Today Hannah made a big turnaround and begged to go to school, so I took her in midday and she spent the evening cheerfully being herself with extra verve - I think she is pleased to again be capable of knocking her big sister down (she lost only 1 pound of her 25.5).  I am rewarding myself with an early bed and a new book.  For you - I hope for peace and an absence of runny poo.

Sunday, January 9, 2011

It's four o' clock and all is well enough to go to bed for three hours

People, what are you dreaming about? Send some this way, will you? I've been up all night so far, dozing holding Hannah, and now that I feel she has enough blood sugar to get her through until she wakes, of course I am so awake I need a blog and a snack. I don't feel entirely comfortable taking a sleep aid in case the human vomit comet fires up the engines. It's funny how every time Hannah has any risk factors for an MCADD metabolic crisis all thoughts of the ass face of stroke or CP or cloudy indistinct brain damage all fly right out of my head and I am paralyzed with fear that I won't guess correctly and Hannah will expire because I didn't take her to the ER. However, the two times I've been to the ER in the middle of the night she did stop puking by 2:00 a.m. but we were held hostage until at least 6:00 only to get sent home. Once they utterly failed to follow the emergency protocol outlined in her emergency letter (written by the genetic metabolic docs at that very hospital) and the second time they only failed to follow about 30% of the protocol. Each time I felt I may have jumped the gun, that if I'd waited two hours I'd see that she would start to keep fluids down on her own if given in small doses, and as long as I kept at her she'd be fine and not spend one more night as hospital baby but instead just as baby down for an evening but well cuddled in the arms of Mama. And yet the smaller she is, the shorter period of time she can safely fast so things only get better for us with the passage of time. But now I don't have breast milk to give her, not that the hospital wanted me to last time because "milk is not easily digestible." Last time we were told we could go home when she could keep down Pedialyte, which tastes like ass (purple ass, but still ass) and I gave folks a lecture about how it was unreasonable to expect that a child who doesn't like the taste of ass should be asked to consume it after vomiting her guts out and that breast milk was actually made for her and not by Monsanto and was more digestible than anything else available to her. I'm pretty sure that got me an "uncooperative wacko mom" note in the file but I did actually later lodge a complaint and request for additional training after the nurse who discharged us advised me to give my daughter nothing but apple juice for at least 36 hours. I had reminded her of my daughter's specific diagnosis and how diarrhea could be as devastating as vomiting for her risk of hypoglycemia and she said even breast milk was just a really bad idea for anyone who had suffered from vomiting. When I talked to the on call genetics doc the next day he wisely (I thought) told me that a physician he trained under said "no human condition is improved by hunger." I've begged the docs we see to give me greater guidance about how to know Hannah's sugar is dangerously low, and are they sure I shouldn't test her sugars, and all of that and what they keep sticking to is how she looks/acts/presents when other indications are she may be low. Once they said she could go as low as about half her normal intake for a while but not for too long (isn't that nicely specific) and they tell me to keep cake decorating gel on hand to squish inside her cheek if I think we are in danger and need time to transport to get her an IV. Didn't I tell you this disorder was strange? So after one barf before dinner, a happy perky child running about later, three changes of bed linens and two for my shirt/bra, I just sat in the nursery chair with her nestled happily on me on the giganto extra large boppy on my lap, and we dozed on and off and had sips of apple juice and Gatorade and she kept telling me off for trying to sing the wrong songs or telling her to sleep. She has ten ounces of liquids containing sugar on board and hasn't hurled for more than two hours. My neck and back are screaming in pain but she is now snoring peacefully, back in a clean crib and smelling only faintly of vomit, and I have hung my hat entirely on how she kept reaching about to pat my cheek, forcefully insisted I sing the Hannah songs only and pulling back to look me in the eye in the dim glow of the night light over the diaper pail (that makes it sound more romantic, right? Like moonlight on a river but somehow more fundamental) with BOTH hands on my cheeks and smiled delightedly at getting to go to sleep on Mommy over and over and over.  I'll keep you posted, please send positive thoughts of clean laundry and a dearth of extra bodily fluids.

Monday, January 3, 2011

2010, bullet by bullet

Numbers to explain the year in review:

Health category:
  • therapy sessions for my daughter:
    •      PT - about 45
    •      OT - about 35
    •      Hippotherapy - about 20
    •      bonus play time at Little Gym -  about 30
  • Doctor visits for daughter - 10 ish
  • Doctor visits for me - skip that
  • times my children went under general anesthesia because dentists don't do "light" sedation on people under 30 pounds - 2
  • kinds of brain damage identified in immediate family - more than, one for hell's sake
  • physical therapy sessions for me:
    •      neck related - 10
    •      broken butt related - 8
  • physical therapy sessions where I went to cheer my mom on - 3
  • number of times she didn't remember my name correctly, before therapy - 2
  • number of times she said she didn't want to do therapy - a bunch
  • number of times she did it anyway - enough that she gets an A++ for effort, and will be released home in a few days, having achieved more strength than she had pre-stroke
  • number of times I've felt inspired to chuck in the legal job and become a PT - a whole bunch
  • Jazzercise classes attended: 50 or so
  • Pounds lost - about 20
  • Months not spent doing regular exercise - 6
  • Bra size letters down - let's just rate this as moving in the right direction.  If I were one of those medical weird ass types (as in "patient denies pain" WTF?) I'd say the bra size is downgoing
  • Number of times I creatively visualized punching "STROKE" right in its stupid ass face while doing a punch move in a Jazzercise routine - at least 150
  • Number of times punches made me feel infinitesimally better - 150 
  • twenty zillion - number of times I had to explain to someone what Hannah's hand braces and taping methods are, how different methods work, separately and together, and what a cast is doing on a perfectly good arm
  • a few - number of times the above made me cry when I really didn't want to
  • a whole bunch more than a few - number of times I did the explanation without tears because I rock.  Well she rocks, and I have been practicing.
Wealth category:

  • Raises - none
  • Expenses - up, up and away
  • Vacations I paid for without charging the whole thing - one big honkin' trip to Disneyland, in my minivan, because I am that cool
  • Bankruptcies, job losses, unpaid bills (debt floating on credit cards excluded) - zero. We'll call this a win, because fortune didn't frown on me here, and the credit card debt far predates 2010, so it doesn't really count as an annual statistic, right?
Happiness category:
  • Belly laugher now identified: Hannah is a belly laugher.  She also hits people a lot and honks your nose while looking you right in the eyes to watch how you react.  Claire was very much a smiley baby but Hannah is more of a laugh out loud baby, and I have to say both traits are quite pleasant in one's offspring.
  • Husband has not been killed by me or anyone else.  This is probably good.
  • I can't say I didn't try, because I really did.  But it made me tired.
  • Claire says I am the best Mommy in town, and she loves me a lot.  She loves me "forty-three" - I think she arrived at this number based on my age, which is the biggest number she has spent any time pondering. I'm trying to teach her about eleventy zillion but she hasn't grasped that concept yet.  Both children seem quite fond of me but Hannah only recognizes two and five, so she doesn't quantify her affection for me, but I think, in the fullness of time, she will. 
  • Debris removal shoes may be available soon. 
2011, bring it on.  You only scare me a little bit with your potential ass-kicking.  It's just a flesh wound.