Tuesday, June 29, 2010

Hippo part the third

We figured out the helmet piece of the puzzle with a knitted cap on her tiny wee head so her helmet wouldn't slip and slide down to block her vision, because, dur.


Who doesn't look nice backlit?


Weight bearing while in motion!


Doesn't she look super confident and ready to kick some ass? Best of all, Hannah learned to sign/say GO! to tell her horse Rocky to go. Like I needed one more dictator in this house.

Friday, June 25, 2010

Friday haiku - divorcing my favorite restauant

Ichiban sushi
the restaurant of my dreams
oh how I loved you

You were sold, and bought
sold again, to my dismay
I don't forgive you

Your tuna tartare
a delight to the senses
now its just spendy

and just not all that.
I loved the Kewpie mayo
and flying fish eggs

the sushi stood still
the river of time moved on
that moment has passed

Thursday, June 24, 2010

cake a looza

Cakewrecks came to town.








We came. We saw. We ate cake. We left with a souvenir naked Mohawk carrot jockey each. And fixed our own little Claire caused wreckiness.




Experience the love at cakewrecks.com

Hippo week two

Again, the uncooperative video loading slowed this down, and will deny you the option of hearing these highly trained therapists and volunteers singing "Twinkle, twinkle little star.





Hannah's affection for the horse has extended to each and every picture of a horse in any book or magazine. I can't pin this on the hippotherapy, but she really does have her hand more open now, and less sensitive. For months we have sat and read together and I use her right hand to turn the pages of the board books we read. Every now and then she forgets to resist it, and turns page herself with her right hand. I have a few of those "touch and feel" books that have textures for things like farm animals and so on, and this last week she has been much less resistant to me rubbing her right hand on the books to get that extra sensory input. Two nights ago we watched her purposefully put a noodle in her right hand and examine it, then she got it back in her left hand to eat it, but still, we were suitably impressed.

Friday, June 18, 2010

Summertime and the partying is easy

This post is overly long in coming out - I've been frustrated by an inability to post videos. I've now officially given up on posting videos on Blogger without using YouTube, even though it worked two weeks ago. Arrgghhh! So, here you have the family cast of characters, at the day care summer picnic. Now imagine you are seeing a video of Hannah dancing while standing in front of the band, swinging her arm to keep time, and the sax player keeping the beat with her, and the crowd around her overcome with oohs and ahhs and oh my god that's cute reactions. Now imagine Hannah over by herself dancing, and bending her knees so she can stick her tiny wee butt out, because I told her she needed more booty. Now imagine Hannah dancing, and Claire stepping into the frame to show some of the moves from her ballet class, like arabesque and tendu, and Hannah clapping. Now imagine seeing the parents of the day care kids (myself included, especially since you can't see it) doing silly games to try to win the grand prize of $100 off tuition. Lord Honey was pretty fast pulling Kleenex from a box, one at a time, but not fast enough. Now imagine my friend's husband picking up cotton balls with his nose well greased with Vaseline, and then shaking them off into his target bowl, all without using his hands. Sadly, he too was not fast enough. All this hilarity led Claire to tell me the next day, "that was a really fun party last night, Mama, but I am really tired."
video

Haiku Friday - the murmur of the cottonwood trees

Oh give me land, lots
of land, starry skies above
but less pollen please

I'd like to breathe through
my nose but not to sneeze so
more sudafed please

those trees may murmur
and give lovely dappled shade
but way too much snow

Sunday, June 13, 2010

A horse of a different color

Finally, an upbeat post for the Gingerlings, one and all.

By Saturday Hannah was back at full speed so we had her first actual hippotherapy session (as opposed to the $175 eval session).



It is probably a little difficult to tell from these two shots that she was in a much more upbeat mood about the horses. Well, maybe the absence of screaming tells the tale, but she was happier.



I had asked for permission to watch another child's session so Hannah could observe another child not hating it, and I'd talked Claire into riding to show Hannah how it was done. We'd practiced putting helmets on now and then over the past few weeks, tried for pony rides and failed, but this week we just went for it. She watched the horses and we ate our picnic lunch in the car and then came back in, expecting Claire to go first to set the stage, but the therapist pulled the bait and switch on me, got Hannah to come willingly into her arms, asked if she could do tough love and just get her started. Claire was a bit disappointed not to be needed to get things going, but then Hannah started wailing so they sent me to the office to get out of her sight. By all accounts, as soon as I was missing from the picture, she stopped crying and performed every task and riding position as requested, including color identification (WTF, she doesn't talk much) but she apparently rode like a pro. Finally after the session was done they came and got me out of the office, where I'd been reading a book on the body parts of the horse to Claire (she liked flanks, loins, and manes) and then they let Claire have a spin on Rocky while Hannah looked on jealously. I guess I have to get horseback riding for them both, which definitely won't be covered by my insurance. And probably neither will Hippotherapy which my insurance considers to not be really a type of OT since it doesn't work on the hand. Now, I'll appeal, and quite possibly kick some ass while I do it and possibly succeed, but it burns me that I have to spend any energy doing this. So it is OK to pay for my child to stick a hand she doesn't want to use in a tub of kidney beans but not to ride a horse and ultimately hold the reins?

Now, Hannah hugs the pictures of horses in her books every time instead of just some times, and if I ask if she wants to go ride Rocky again, she nods yes instead of squealing "un-unh!"

Hooray for progress!

Now, to get an extra job to pay for the sessions.

Friday, June 11, 2010

Haiku Friday an ode to fever

Grape Ibuprofen
smells awful but works wonders
bless its purple soul

Weekend update, brought to you by tylenol and xanax

So it turned out Hannah just had an as yet unnamed virus. I think we should name it, perhaps, it that shall not be named, based on its general state of evilness. What kind a virus just deals one a high fever and a shiver me timbers week? Tomorrow we try our first real hippotherapy session, the one a few weeks ago having been an only an evaluation and some brief riding while screaming. I was fairly concerned that I could have provided the same level of tension, screaming, and tears at home for a lot less than $175 but then, I am no occupational therapist. I've spent ages trying to get her to wear a practice helmet on her tiny wee noggin, to admire every picture of a horse in every one of her picture books and toe get her on a tiny pony at our local hands on farm but these ideas are generally met with an emphatic and shrill un-unh and violent shake of the head. The week was rounded out by things that annoyed me mightily at work, marital spatting about who should take time off work to care for the hot baby, money woes, and exhaustion, peppered with some gloom and doom weather that put the kibosh on every outdoor therapy plan. Suck factor 8. Likelihood of general improvement next week: seems high, knock on wood.

Monday, June 7, 2010

And by the way, I never thought of CP for six hours

Six hours and a kick in the ass later. . .

I’m on my way to Hannah’s regular six month metabolic clinic appointment to check her status with MCADD and feeling all my general PTSD feelings on the way. The route I drive to get to Primary Children’s Medical Center is the same route I would drive to see Claire in the hospital, right next to PCMC when she was born, and again to see Hannah when she was born, and each time I have driven one of the girls up in a panic that they were ill and fading fast, such as when Claire got RSV at five months of age, or the two times Hannah’s vomiting has caused me concern enough to take her in for a blood work up in the middle of the night. I felt the tears come up but the Xanax kept them at bay. We went in to clinic and were seen only about thirty minutes behind schedule which is not bad, considering their track record. I had to report that Hannah had a fever this morning, and that I didn’t know why, but that she was 102 so I had given her Ibuprofen and brought her in anyway although this was a regular check and not a sick child visit. Dr. You-know-who was concerned and started amping me up immediately, because Hannah has once had an unexplained UTI. The regular pediatrician had wanted me to get a test called VCUG which is an ultrasound to check for abnormalities that allow reflux back up the urethra or some such thing. I explained I’d been reluctant to spend any time at PCMC during the really sick kid season, since the UTI could have been a flukey thing and I didn’t want her exposed to any bonus bugs that the hospital is full of. While we were there, the doc checked her temp and found it had spiked to 103.5 even with Ibu on board so he sort of panicked and wanted her to have an intramuscular shot of high dose antibiotics while we waited for a test to show whether she did indeed have another UTI or that this fever was just from a regular ol’ virus, but still one that could cause a metabolic crisis. After much ballyhoo, we went at the doc’s direction to the outpatient pharmacy to get a dose of antibiotics which we were to bring back to the clinic to have a nurse administer. Now, the genetics docs are mostly theoretical folk, and although they see their patients when they are sick, they lack some basic skills about regular kinds of testing and treatment, and just the way things are done generally. So down at the pharmacy, they didn’t want to even fill the thing because I would need home health nurse to administer it. I explained that I don’t have a home health kind of child, that Hannah doesn’t see a nurse at home in that fashion. Back to the drawing board. Eventually I got it filled (about one extra hour) had my poor infant catheterized in the ER because the lab doesn’t catheterize, and finally headed back to clinic. By now metabolics is done seeing patients, my doctor is gone, and everyone wants me to know my doc has been wandering around with a sheaf of papers looking for me so he could give me my referrals and see that we’d had our shot. I kindly offer up the vials only to be told no nurse on duty in this clinic can reconstitute the drugs, and that must be done by inpatient pharmacy. So we wait. We are not inpatient. We are not a priority. An hour passes. For someone to mix two vials, warm it up, fill a syringe, and bring it back. Meanwhile our doc comes back, gives me his personal number, tells me Hannah is making ketones so we know she is not eating enough to handle this high a fever, and sends me out with strict instructions about ibu / acetaminophen dosages and how to call him directly if she seems lethargic. She is of course passed out in my arms, having been poked, prodded, had a tube up her hoo-ha and a generally shitty day. He tells me if he can find my drugs he will give us the shot himself. I feel some concern that he may not be good at it. And we wait. Eventually a nice nurse returns, who is possibly the official doctor you-know-who wrangler and she takes us in an empty room and gives Hannah the shot. Hannah screams bloody fucking murder at the indignity of it all but passed right back out on me as this whole episode had now occurred thought the timing of normal naps. So then, because I was unsure I could get her in the house and back down for a nap, I went home, but left her sleeping in the nice cool car, and went in. Got my laptop, wrote in the still idling car in my driveway (environment be damned, I have a baby to make rest) and then went for another drive so I at least know she has had one hour of uninterrupted sleep in the relative peace and quiet of her Cheerio encrusted car seat. Soon I will take her in and dose her for fevers and try to tempt her with any food known to Hannah kind, including Natural Cheetos, and everything the nutritionists oppose, because I just want her eating. And not going to PCMC in the middle of the night. Call me selfish, call me irresponsible, but a mom’s gotta do what a mom’s gotta do.

Fuck you universe. I’ll get you back, you asswipe.

Friday, June 4, 2010

Haiku Friday - glad to the the back side of you, week

A longish short week
especially for my friend
whose husband just died.

Memorial Day
just changed for her forever.
For her I feel sad.

This week at my job
I did not kill, beat, or maim
those who thwarted me.

So I will call it
a success in some key ways,
a fail in others.

Tuesday, June 1, 2010

I know you do but what am I?

This was the reply from my friend when I had texted to her "sux" in reply when she texted me that she couldn't join us on our trip to the local farm park. Since I happened to be by a rooster at the time, I sent that picture back in response to her question, and said she should be glad I wasn't by the pigs or cows.

Obviously my friend and I can slip into pre-teen behavior at the drop of a hat. I've been thinking a lot about development lately, as I wonder whether Hannah needs speech therapy to get going, and also as I watch both she and her sister changing nearly by the day. I had asked Claire to ride the pony at the farm for me, to show Hannah that pony ride was in fact a good thing, and Claire answered that she would, because she had "big sister powers." She changed her mind though, and would not ride to inspire Hannah because she found the pony's pen too stinky. Big sister powers indeed. Claire is so verbally skilled that she picks up things said near her just one time, including song lyrics. Lately you'll hear her singing "shyness is nice, and shyness can stop you, from doing all the things in life you'd like to" after my recent Smiths festival. When she wore a shirt and sandals with rhinestones we played Rhinestone Cowboy a few times, and now you'll hear her tonelessly singing "I'm gonna be where the lights are shining on me!" So tonight, when Jason was running through a series of things on Pandora, I told him not to mention the name Cherry Poppin' Daddies under pain of death, but I was perfectly comfortable dancing naked to the Violent Femmes' Blister in the Sun this morning, go figure.

Hannah's physical development just sent her flying by leaps and bounds with her new found mobility and she walks around the house just to walk, and climbs into the Flintstone style cars at the day care in the big room and howls if made to leave. She only accidentally said "pig" when she saw a balloon over the meat counter at the store and will not under any circumstances repeat this word. She loves to have me read to her and makes me name any picture or image she points to. Shorter board books, or those she has memorized are her forte, and although she'll choose "Little Fur Family" it is too long for her and she loses interest when the fur child gets to the fish and she wants to skip to the parents holding the fur child's paw and singing to him in bed. In bigger news, her "ooh ooh" sound made every time she shes a monkey of any sort will now come out as "ooh ooh, aah, aah" so I presume she is making headway with speech. Her "un-uh" to tell me no can be delivered with wide ranging inflection. And every now and then, just every once in a while, she will forget that it pisses her off and she'll turn the page of a board book with her right hand just because I usually make her do it. Baby steps for righty!

I am thinking we are in for a period of adjustment coming up as Claire goes to summer camp and will have outings four days a week, including two days of swimming lessons, and with truncated naps most days. Hannah will need to adjust her feelings about a pony and a helmet for hippotherapy. As a child I saw summer as almost a period of stagnation, not development. My memories are mostly post reading so I remember summers by what books I devoured but it seems to me now that by having routines change so dramatically we will be in a period of rapid growth, as Claire goes out every day, and Hannah's wee class prepares to join the "teddy bears" which will require her to be able to walk in the wood chip playground. I say, prepare for Armageddon, I am tired already.