So much to do, so little time!

Anxiety on the receding level means action on the mommy level. Grief is still there, depression is lurking behind (in a shadow, obviously) and anxiety still has me grinding teeth and thinking stupid thoughts while missing other thoughts of greater value, but the energy to do the things of family living is returning to our family life. Luckily, I still don't have a job, though it seems possible in the future. I keep telling friends I cannot fathom how I ever had a full-time, high-intensity job AND cared for kids and home and did all that therapy for Hannah, lived with a depressed and slow moving husband (in secret he may have been speedy, I am still not sure) and...!!!...then started on therapy for me, then spousal suicide and then more therapy for Claire, then me...then arrgghhh...then I remember that I was propped up with oxycodone from November 2010 to March 2013. And then propelled by PTSD, grief, sobriety and the need to eventually get better, then ... .... .... PRESTO! I now operate at roughly 65% and climbing of who I used to be before I married a depressed! lying! manipulative! wrongly made! sort of beautiful in a flawed but beautiful manly and deeply fucked up manly way kind of man and had children with him and eventually had all my own previous flaws and insecurities meet up with special needs! Depression of self plus spouse! Life threatened babies! Death of a parent (and beloved dog)! Life in a CAPITAL L Sense, plus regular life and fell the fuck apart. Boom. Did I mention BOOM!? So now, I figure 65% operational skills is not bad, considering. People say you need a year for grief, you need a year to get equilibrium in recovery, and obviously you need a year plus for PTSD due to its earth shattering and ass kicking nature. So sixteen months since spousal death, this is not bad, not bad at all. Except ALL. Kinda bad still, honestly, but not AS bad as before. A win!

We live to fight the good fight, and smile a little today. Knowing there are more smiles tomorrow and beyond.

In the last two weeks I have spent 40 hours or so pulling weeds, been social repeatedly on as many as four days in a row, volunteered at church, co-parented other peoples' kids as well as my own, gone to continued therapy, sorted the detritus of about the last two plus years in my homey mess and recycled or tossed quite a lot of it, and been validated for how I have cared for my daughter with a metabolic disorder and CP by people in the know who say I have done well by reducing PT and just living. I have read books to my kids and encouraged them. I have loved myself, if not fully, at least I have tried, and told myself it is OK to gain weight while I am in triple recovery, and I bought clothes for me in this size, to reconfirm my affirmation. Firm is a word that partly fits, except for when I jiggle a lot. I have prayed and meditated, though not always with feelings of peace. I have felt optimism, pessimism but less so, hope, despair (natch) but then, hope some more, belief I can truly make my journals of turmoil into a book that might help others recover from trauma and despair, doubt, and, ultimately, belief, again. We have been to the zoo, swimming lessons, the lawn mower repair shop, book club, the store (too many times to count reliably) and I almost set up the computer again to receive pix so I can catch up on holiday and event posts.

Crap, I am pooped. But also, I am having some extra coffee so I can keep going.

A few ways CP changes my parenting style

I have two kids, one with CP, and one without. After the first few years of seemingly endless PT and OT, therapy generally now comes through living for Hannah. That means my affected child copies her sister and therefore I shamelessly use my older child to help the younger one, just by hoping two handed activities look good.  Lately I have hosted a lot of play dates for both kids, and I have realized that not only do I use my kids to help each other but I am using other families' kids to encourage mine, and it works. It seems like other kids who come over think my house is the "no rules" house.  I have an indoor scooter, and kids can ride it through the house, and I kept the Flintstones style car past the normal age based time frame, and people climb on top and push each other around in creative ways. What I have been enjoying is how physical kids can get in group play and how that inspires Hannah in particular, but also keeps Claire from sitting and watching TV. Hannah got the scooter when she was three or so, as an idea from a PT, with the hope that she would use it and increase balance and strength in her affected leg. We got the three wheeled style with a wider platform. Honestly she still doesn't push off with her affected leg but she will get on it and scoot through the house at least once each time some other child takes it for a spin and leaves it lying about. A tall child who is visiting today was able to get the cereal boxes off the fridge, which us something my kids would just call to me to do for them, so even self sufficiency skills get boosted by playing with other kids. Seeing kids whose parents must be telling the kids to get it themselves (unlike me, as I seem to find it terrifying to let my kids life and pour a gallon of milk and spill it) Hannah now gets inspired to carry a stool around so she can get things. All in all, my house is a complete disaster now that people get their own things of interest but I figure it is only to Hannah's benefit to keep stretching for things above her literal and figurative reach. I am trying to work on not doing for my kids when they could do for themselves, but right now, just working on that is all I can do. It really is helpful though, when a mom of a fellow almost eight year old who is coming to sleepover texts me to say her child gets clumsy when she hits her exhaustion limit, and to know that is not really a factor of CP or small stature but one of run of the mill childhood experience.  So today, I am grateful for the village people who sometimes send their kids to me.  But also I am tired of picking up M&Ms.

Good news for clumsy people everywhere

Where have I been, and where is my brain? Firstly, celebrating the great good news that the 5 second rule for eating food off the floor is indeed valid. H is clumsy, given her lack of right sided motor skills, but then again, C and I drop our fair share of food on the floor. When both kids were still at Kids Kampus, I agreed with the 5 second rule wholeheartedly since my blessed daycare seemed to mop the floors once an hour or so. Since I was often there I was in the know about their cleaning efforts, as I came at random times to either meet an Early Intervention caseworker or to pickup and return my child. My house, though, has rarely been cleaned as frequently. OK, never. Whatever. And now, thanks to PTSD (thank you MCADD and Lord Honey, not) my house is never clean enough that I would think eating off my floors a great idea. So news reports this week of a study testing the five second rule and finding it valid were welcome here. Check NPR or Google it, the news is in, picking up food quickly really does make it safer.  Hooray for us! H has absolutely no fear of eating food she drops, and since we became dog free a couple years ago when Sophie went to Dog  Heaven, I stopped being quite so worried about what the floor might harbor that could sicken or kill a person who might eat the odd unwrapped chocolate or piece of cheese that dropped. Let's skip right over the deer poo in my yard, literally and figuratively, OK? Like in the Lego movie, Everything is Awesome! We can retrieve each Samoa and jelly bean and stuff it in, provided we are quick about it. Is it wrong to feel so happy about being slovenly and clumsy? I say no. In my never ending quest for affirming optimism, I say ... Yay!

Secondly, I have been internet sleuthing literacy and Common Core and related stuff, not because my kids are failing, but because the homework they get just makes me ... wonder.

Thirdly, the time just gets away from me. When I ask aloud where the time goes, C generally says that an old man takes it and almost never gives it back. I think this goes back to me telling her something random about Father Time, and maybe her seeing weirdly drawn cartoons of the new year as a baby and such. Lawyers sometimes file a Motion to Enlarge Time, which I have always wanted to file but I could never figure out on whom I might serve the motion. Maybe later this week . . .

Back to bracing basics

Hannah must have just stretched or something and her wrist is kinking up a bit. We braced for so very long, and when, over the last year, and after the last brace had such fatigued fabric that it couldn't hold the stay in the palm of her hand anymore, we stopped bracing. Her OT said when her wrist didn't flex and drop her hand, as was not happening much last summer, she would do just as well without it so it wouldn't impair her volitional movements.  Happily, we stopped bracing. Suddenly Hannah recently noticed she couldn't hold a paper down with her affected hand while writing with lefty and she wanted to spend more time at OT.  We went in this week to get new ideas and I had thoughts of a new brace, and came home with two, one to help hold her hand down during school work and the other to provide a better grip on swings and playground equipment and the like. Now of course she doesn't want to wear either one, so we are back to that nasty place of trying to create a commitment to therapy after taking a break. This is not my favorite place, as it brings up all my issues of wanting to encourage her to build skills and strength and confidence and lay down neural pathways for the future, all conflicting with my desire not to ever communicate to her that she is anything other than wonderful, perfect, not broken, and not in need of fixing. This is something I will never feel I really have down.

However, in other Hannah news, communication skills are really on an upswing.  Han has fully embraced and adopted the family practice of making old songs new again, changing the lyrics to songs of interest and renown to fit the topic in one's mind.  Now "I just wanna see you ... I just wanna see you-oo, see you be brave" becomes "I just wanna see you, I just wanna see you-oo, see you be ... FART!"

Bracing.

Take that, CP, pediatric stroke...my daughter can take you!

So we had our clinic visit at Shriner's Hospital yesterday, and the verdict is in...Hannah rocks. I sort of knew this but it is great to be told. I really struggle with accepting acknowledgment for doing well as a parent, because I am so full of self defeating thoughts about my abilities to take care of kids with better than expected needs, but the truth is, I have done well by her. Dr. Mike said so! In fact his words were "best job ever!" But enough of me and my issues, she is rocking it all, so much that we continue to not brace her during the day so she is not inhibited in her voluntary movements. We will continue the night stretching brace and knee brace to make the AFO effective when she might otherwise bend her leg during sleep. I was given the advice that ... Are you ready? ... We need not go to PT but once a year to have an eval and get ideas for activities but life is the PT Hannah needs right now, so I should encourage her to be as active as possible, continue taking walks in our hilly neighborhood, continue going to the bounce facility regularly, continue with dance and any sport or activity that she enjoys, continue to have a big variety of footwear (especially cowboy boots) and so on. We will continue with OT visits and activities, as her hand and arm still need more development but my treating team doesn't think surgeries or bracing will be needed for her gait and mobility. Ahem. Yep, she rocks. Of course we could have increased spasticity with a growth spurt but really the leg spasticity is still dynamic spasticity only.  Basically, no need to borrow trouble and look for negative outcomes. And PT in life rather than at the clinic.

Oh, happy day. Thanks be to God, Early Intervention, the Angel of PT, and an awesome kid. My heart is full.

Your child was diagnosed with MCADD but will live a full life, with care

When we got the confirmation of my daughter's MCADD diagnosis, we had an answer for the crisis she had gone through, but I was terrified of being able to keep her alive. Five years out, she is indeed alive, and MCADD was not a death sentence. A butt-kicking experience, but doable.

Most children will be diagnosed through the expanded newborn screening, done shortly after birth through the heel stick blood tests. The nurses who have practiced for years often refer to the test as the PKU test, since for years that was the main illness diagnosed by newborn screening. Now, most states have expanded their newborn screening for metabolic disorders, and MCADD is about as common as PKU, and the second most common genetic metabolic disorder.  Loads of kids are diagnosed years after their births, when a younger sibling comes up positive on the newborn screening and then all other kids in the family get tested, and the family learns they have been successfully living with MCADD for years.  Regardless of how you learn about it, being told your child may die from a regular average every day cold, is indeed terrifying. The scariest day is when the parent goes to the internet to learn about the new presence in their lives, and they find websites describing the tragic stories of children dying when the condition was unknown. Armed with the knowledge that as long as your child never goes into a serious low blood sugar state, she will live, you pick up the pieces and move on, fear in your heart.

My daughter's stroke and cerebral palsy were caused by the MCADD factor, but are certainly not a common outcome for MCADD.  Hannah was not a gifted nurser, and her blood sugar went down slowly after her birth, so that 2 1/2 days after her delivery she experienced a metabolic crisis.  If we had a normal delivery she would probably have died and people might have called it SIDS, but since she was born by Cesarean section, we were still in the hospital.  Nurses charted her low temperature and took her from my room, her blood glucose was measured, they tried to feed her, and measured her blood glucose again, and again, and eventually charted "glucose IV stat" but it was not given for another 20+ minutes.  She became fully hypotonic, with absolutely no muscle tone, and experienced a metabolic crisis.  Doctors were baffled by her condition, gave antibiotics and monitored her closely, and about six days after she was born, we were given the MCADD results. At the time, no one expected there to be lasting complications, and the stroke was not diagnosed.  I had enough to worry about, being told that a few hours delay in feeding could kill her and that fever and vomiting might be cause for a hospital admission to avoid a hasty death. We came home without her, brought her home a couple weeks later, and I pumped breast milk for the next 18 months, since she never was an adept nurser.  I was terrified, I wondered if I should quit my job to stay home with her or try to get a nanny rather that putting her in day care, and I wondered how I could keep her alive if a world class medical facility nearly couldn't.  Three times I have taken her to the pediatric ER for testing and a glucose IV and three times she started keeping food down while there, recovered, and has never had to be admitted to a hospital for her MCADD condition.  Now that she is bigger, fasting is less risky, provided she doesn't fast for long or have other illness of a significant nature.  Day care was fine, in fact, given her CP, it was a huge part of her successful development to date.

If I could tell parents of kids with MCADD anything, it would be - you are good enough to do this. You really, really are, so don't waste any energy with fear and self doubt - just be mindful and do your best.  If you get here because you are in a similar situation, please email me for support. If you struggle with your fears of being adequate, get help.  If you are trying to be supermom, don't hurt yourself to do it.

I don't want to blame my meltdown on my daughter, but instead on how I reacted to her condition - but having a daily fear like this contributed in a big way to self medicating myself into a pain pill addiction that could have robbed my daughter of her mother altogether. Not cool! Not good parenting! I hope that other parents are smarter than I was, and don't let self defeating beliefs, the depression and anxiety that can come with family illnesses be part of why you sink under the weight of what is on your plate.  I wish I could go back and tell myself that indeed I was good enough to care for this child, that I was up to the task. History has proved that I was, so far, yet I didn't invest appropriately in my own health and well being and I very nearly blew it.  Having other family issues come along means I can no longer cushion the blows with pain meds and anxiety drugs, so now I must do it all sober, which is both harder and easier, and now I need not engage in further beating myself up for daily acts that affirm my negative beliefs. But I wish I had forgiven myself sooner and in a less gut wrenching fashion.  So my message to other parents who have similar burdens to carry, take care of you, so you can take care of the kids.  You deserve to be proud of what you do to serve your kids of every flavor, and to be good to yourself.

C freakin' P

For World Cerebral Palsy Awareness Day I figured I would add to the interwebs' collective store of knowledge about CP but it turned out I learned far more reading other people's posts. How is it possible that I didn't know that no one does CP research? Go figure.

We are lucky, because CP doesn't really hold Hannah back that much. She is in a regular class, doesn't have identifiable barriers to learning that the school can assist with (they adapt when she uses scissors, etc., as needed), and as far as I know she has no cognitive impact (she does think farts are super funny but somehow I think that has nothing to do with CP). She is clever and smart and beautiful and sometimes quite winsome and sweet, and sometimes hisses at me like a feral cat (probably more related to being five, having her father commit suicide and about 90 days later mom went off to do forty five days in rehab, again not so much CP related behavior). Mostly she navigates her world incognito, and maybe is perceived as young in her peer group, which is actually true.  However, despite her success, when we were at a park playground near our home and ran into a family with a child in her kindergarten class who is very active and able bodied, that child asked me why Hannah needed help to navigate a tricky monkey bar feature and proceeded to show far more interest in Hannah's big sister.  Every now and then she drools a little when she concentrates. We still end up at Shriners all the time for OT and PT, use stretching braces at night and continue to get conflicting advice about the benefits of using AFOs (proof there oughtta be more research right there, since the conflict comes from two parts of the same hospital so what is a mother to do??)  I don't, at this time, teach Hannah that she has special needs and the word disabled is never used here. I think she would tell you her Righty doesn't work all the time, or that it gets tired, I don't even know that she knows she has CP although she might be able to say she had a stroke, I dunno, I'd have to ask her.  It is not ruining our lives but it is a drag.

I wish I could be a little more grateful, as some moms sound when they tell how they love their child and CP is part of who that child is. I guess I still don't have that level of acceptance. If I could wave a magic wand and take CP away from Hannah, I would do it quick like a bunny and never look back, because I hate that she can still be a doctor but perhaps not a surgeon who needs two strong steady hands to operate, or when and if she has kids her not quite as able hand won't be as handy to hold her baby or a million other things that will be harder for her than they would be without CP.  She is indeed the child I wanted and she doesn't disappoint me but I do wish I could smooth her path down to the regular rocky path of life from birth to adulthood.  I do wish she didn't have to spend time at a clinic where the Cozy Coupe cars weren't specially built with IV stands and stickers that say "cancer fears me" but yet I am grateful to have such a facility available to my family so she gets the necessary help to be able to do the most she is capable to do.

Bouncing to beat CP

What do you think, did intervention work on this stroke survivor? Do you see hemiplegia or a little girl having fun? Yeah, I thought so too.  (heart swelling)

I've been meaning to write about this for ages but got far too busy with whining about my head.  However, after suggesting it to someone I figured it was time to share. We started going to this bounce place more than two years ago with the Angel of PT,  Michael Workman, creator of the Bamboo Brace, and our PT spirit guide. Actually it terrified me back when Hannah was a new walker and quite unsteady, but I was assured she needed a place where she could safely fall down, and he was right. Not only did it give her a safe fall, but it gave her a whole lot more, especially one more place where she could do what all the other kids were doing, and just have fun.

When we stopped going with our PT, after aging out of Early Intervention, we just kept going for fun. Especially during the day, during open bounce, when bigger kids were in school, Hannah could bounce on the trampoline floor, and crawl on the floor, and climb the ladder of the inflatable slide using her affected arm to assist her in climbing up, and mostly she just had a great time without knowledge that I considered it therapeutic intervention.

Between divine intervention, Early Intervention, and me taking a lot of time to do stuff like this with Hannah on a regular basis, she just is not all that impaired.  Sure her leg and arm are still smaller in mass and less effective than her unaffected side, but she can do way, way, way more than she can't, and she is mainstreamed at school.  We are hitting occupational therapy the hardest now, and I don't know what we'll be doing to get those gains, but flailing her arms while she jumps seems to have strengthened her shoulder and upper arm enough that she doesn't flex her wrist and currently doesn't need that brace anymore.  I'd like to see her not favor that hand but she does a lot of two handed play, because her upper body is strong enough to move the arm naturally, so that weaker hand is not relegated to waiting all the time.

The Bamboo Brace was the beginning of this, but the bouncing kept it going, we think. We bounce at Jump Around Utah in Salt Lake City.  The owner sometimes laughs when we come in for half an hour before closing, just to get a little gross/fine motor skills work in on the fly, but every time we drop in we are glad we did.  Somehow, we have arrived at a time and place where I can come in with the kids I have with me and just sit down and look at the internet while they play independently. Yep, my child with CP plays independently and successfully in a rough play environment.  Did I picture myself saying that three years ago?  No.

Bouncing is for everybody.  My family and kids' friends can go for a playdate/babysitting event and work up a sweat while getting the ya-yas out.  A friend whose twin boy was eight months behind his sister in learning to walk made huge advancements when his big sister started bouncing with him on their trampoline, so I feel bouncing is indeed universally beneficial to build strength and balance but especially for those of us whose kids are otherwise limited in activities they would naturally do, I can't think of anything better. When my PT explained it to me, he described these benefits: fast movement on a soft surface builds muscle strength, challenges and therefore builds balance, develops the vestibular system which is important for our kiddos with impaired sensation so they better learn where their bodies are in space and relative to other stuff, and learning how to fall.  And, as you saw in Hannah's video, how to bounce back up.

This is not a sponsored post.  I would do a sponsored post, for the right people, but this is just a shout out to some very real folks and places that made our battle with stroke and cerebral palsy a battle we could fight.

Hello from the land of running in place, borrowing from Peter to pay Paul, and sucking at life

I must have 5 posts in the works, ready to go when I manage to upload photos of videos from the new iPad but someone how the "git 'er done!" phase just never comes to pass.  Why is that?  Is it the old folks in the nursing home?  Is it answering Claire's questions like why doesn't Grandma turn her head  (because she stopped doing it and now she can't)?  Is it getting too distracted with delight and laughter when Hannah says things like "that is stinky, indeed!"  I thought February would bring a modicum of peace and at least a less frenzied pace and I was wrong, on all accounts.  My husband thinks I am nuts to put Hannah (and Claire, obviously) in swimming lessons if it means he has to get up on Saturday, no matter how many times I tell him that the use of her hand starts in the strength of her shoulder and getting her to a full stroke in swimming would be huge in PT and OT ways.  And I still have to combat the badness of my cute idea as a baby to let her play with receipts from all my shopping because she would crunch them in both hands and stuff them in the bag and tear them and so on - only to find out all that register paper is loaded with BPA.  After carefully putting my breastmilk in BPA free bottles she will still get breasts at age 8 because I gave her receipts to use to stimulate her hand.  Best OT tip of the week - buy half price Valentines for next year, and to play with this year so you can more half price sets to get the child tearing things apart at the perforations, and hanging window clings.  (but don't say crap to me if they were all made from melamine eating child slaves in China)

One last thing to say before bed, besides that I don't know anything about the Oscars because I only saw 5 kids movies all year and Puss in Boots and Harry Potter were snubbed, so I skipped an Oscars party to stay home, read to the girls and bedgthem to wear clothes, and work a pile of files from work . . .  are you ready . . . . are you sure . . . .Girl Scout cookies are in on Monday! 

My life is out of order, so why not my blog?

I should have posted Halloween's gory, sugar-laden glory, but I haven't.  I should have memorialized the changes in the household as we swing into fall and settle into the "school year" which for all obvious reasons ought to be when we celebrate the New Year - but I haven't.  And three posts of "significance" are in the drafts folder, moldering in their significance. 

So let's just focus on this weekend past, and the development of a toddler in diapers and her metamorphosis into Undie Girl! Who wears panties!  And sometimes pees through them right into her shoes but still - panties they are and panties they shall remain, regardless of how urine soaked they may be!

I know I am lucky that my child with CP is training in a normal age range, and some of my bloggy friends will read this post with envy in their hearts and I do not blame them one tiny little bit, but I think those who don't live with CP or see Hannah tip, slip and shuffle every day and the ways in which she compensates to keep herself oriented will know how her condition makes this type of skill building more challenging than it is for typically developing kids.  My sister told me that she thought potty training was easy (yeah, I know) and she just waited until her kids were developmentally capable of doing each step on their own and then she just told them they were potty trained and it was done in a day.  My response was something like "oh dear, I've swallowed a bug . . . 'scuse me while I cough 'til I vomit so you can't tell whether I am laughing or crying" and then I explained that I'd hoped that Hannah would potty train before the point at which her size and balance would allow her onto a grownup potty without a very real possibility of doom and bloody head injuries.  So we waited a bit to push it, until her preschool teacher said she was ready to move forward.  So of course she wants to do it herself, now that she knows the joys of peeing in the toilet, and so we now have worked out that she should step onto the step stool, pivot slowly and carefully and safely to face away from the toilet, pull down the panties and pants while standing on the stool, and then sit down.  I particularly enjoy the stand up wipe maneuver she has created while standing on the step with her pants around her knees, and the shrieks of "Hannah do it!  Hannah do it!" should I try to help her get her pants up before she tumbles to the floor with an arm that doesn't do a lot to break a fall and her knees tied together.  It is nerve wracking, rather, but I haven't got another plan.  Because I want her to speak to me as an adult, I show you only the photos of the approach and the about to sit down position . . .  I'd just like to say it is a good place to have your sense of calm tested.  And I recommend not wearing the tutu.  Just sayin'.

You may not know this but I suck at mind reading, in Hannah's eyes, anyway.  Invariably I am supposed to help her, or not, and I get it wrong.  She manages to get her pants back up on her own with only a 15% angle droop on her affected right side.  I was complimented by our OT when I described how I've been coaching Hannah on getting her pants up and down by hooking the thumb and then sliding it around to the side.  But by the end of the weekend she had scratched her right leg a fair bit with the awkwardly oriented thumb sliding up and down the leg, but she did mostly handle the pants herself and I believe ultimately this will challenge and improve her right hand strength and dexterity and particularly her thumb strength in an important way - but my heart may give out before we get there if I have to watch her pull up her pants standing on that stool too many more times with her heavy little noggin (weighing more than her tiny ass, I am quite sure) just dangling out over those unforgiving tiles.  I am sure there is a mathematical equation to describe the fulcrum and whatnot of head hanging forward while butt dangle backward and tug the pants with unequal force between the sides and not apply too much force that puts the whole thing in a downgoing motion.  From my recollection of higher math and physics and how they become one in the end, I have gleaned that the equation looks something like   O(h) x WTF + zOMG    where h is Hannah and F is floor and OMG is that unreliable thumb with a curl and the directions say solve for fuckity fuck.  I think I told you I don't have a math degree, right?

I like it better when she drives.  

Someone is very, very, very close to reading. 

The confusion and excitement and whirlwind of the last couple of months can best be demonstrated by my Fall centerpiece - consisting of three miniature ornamental ears of corn, some autumn leaves collected by the girls on our many leaf walks, and a piece of rubber dog poo, to keep things in perspective.  Wanna come over for dinner?

Please stand by . . . or, walk this way

Folks, you've been mighty patient with me, and I thank you for that.  I never finished boasting about Hannah's birthday.  I haven't yet told you of the process of closing out our case with Early Intervention and the bittersweet farewell to the occupational therapist we had for more than two years, and the sixth bureaucratic caseworker in the same span of time.  And of course, having the relationship change between our family and Michael Workman, the Angel of PT, without whose Bamboo Brace we would not be where we are today.  And then I didn't get to tell you about our preparations for kindergarten for Claire, or the choice to keep Hannah in the group of the people on the younger end of her day care class - the ones who are "not quite ready" to be a Busy Bee and so will be Big Ladybugs, at least for the time being.  And how this decision concerns me as it makes me wonder of the wisdom of keeping Hannah, with her late summer birthday, in the cohort that would be her regularly assigned class or might I, instead, hold her back a year so the physical disparities are not so great between her and her classmates and yet leaving her less intellectually challenged.  In her preschool class, no one else knows all their letters (and has done so for eight months) and yet many others can speak more clearly about the letters they do in fact know.  I haven't told you how I worry that the decision I make for this year will not bind us to a certain result in kindergarten - but the choice I make in our kindergarten year will indeed bind us for the rest of her school career.  How will I get that one right?

I also haven't told you how delightful the two girls are to be around.  Fart jokes aside, they have lovely manners and they are wonderfully loving to each other (excepting the odd and oddly lethal sounding disputes over the toy of the moment).  I think they truly miss being in the same school even though they didn't play together on a daily basis there.  Hannah was given a chance to select a sucker from a large jar as bribery for allowing a medical assistant to weigh and measure her, and she took two - so she could give one to her sister - and then wouldn't even open hers until she saw big sis later on and could present it herself.  I haven't told you how joyful Claire really is - even in the roughest moments.  Case in point - the new kindergarten schedule has us waking so, so, so early  (compared to last month, that is) and when I went to wake her she threw her arm around my neck and said "Mommy!  Mommy! Woo-woo-woo!!" (the traditional family way to praise someone about virtually anything).   At 7:40 a.m.!  I think she likes kindergarten.

I haven't told you how discombobulated I am to not have to consider the dog when I want to slip out the back door unnoticed, or I start to pour water in her bowl until I realize her bowl is no longer needed.  We failed to adequately recognize the extraordinary effort she put into cleaning the floor, and have had to increase the mopping schedule considerably and we still are not up to Sophie's standard of cleanliness.

And finally, I haven't told of Hannah's extraordinary progress in gross motor skills generally and in foot function specifically that led her treating physician to decide that she didn't need to wear an AFO, and we'll re-evaluate in six months but it looks quite as if this is a child who might not spend her childhood in braces.

And so we say goodbye to footwear like this:

And hello to cheap footwear from Target - every girl's dream.

Walk this way, please!

They say it's your birthday . . . you're gonna have a good time!

My baby left babyhood.  Those of you who find me sentimental, well, overly sentimental, should perhaps skip this post.  I am going to wax sentimental, and I won't likely wane.  May I introduce my daughter, Hannah Rose?  We've been working on saying "pleased to make your acquaintance" and formally shaking hands (mostly because it is a nice OT type maneuver to get that hand to turn thumb up) but also because it is fun.  I remember when Claire had just been born and I asked Lord Honey if he had been practicing saying "and have you met my daughter, Claire?" in his mind, in anticipation of introducing her to someone.  He was baffled that I might practice such a thing, but I was excited.  I wanted to say "my daughter" far and wide and frequently.  I liked that daughter so much I wanted a second child and hoped mightily to get another daughter.  And fortune smiled on me, and I got this daughter.

 

Have you met my daughter, Hannah? Born on the eighth day of the eighth month of the eighth year, and under a lucky star.  As much as we could say we were unlucky that she had this annoying metabolic disorder, and more unlucky still to have had a metabolic crisis and a stroke in her first two days of life, we were lucky that Claire's lucky and unlucky c-section birth set in motion a need to have another c-section, and that having had Hannah delivered by c-section meant she was still at the hospital when her temperature dropped and her blood sugar tested low and after feeding didn't work she was eventually given a glucose IV (coulda been faster, like oh, say, STAT, the way it was written in her chart, but still) and that administration of glucose put an end to more damage occurring then and there.  So the luck and the unluck combine, the yin and the yang, the peanut butter and the jelly, and you still get a lovely girl, a lucky one, my daughter.

Some say she is lucky to have me, but I think I am luckier still to have her.  Go back and look at that first picture here.  Go on, I'll wait.  She is airborne.  She is brave and bold and funny and strong and beautiful and wicked smart.  And best of all, she is mine.  She says "I got you, Mommy! I got you!"  I got her.

She worships her sister, and who wouldn't.  Claire is so sparkly she competes with the sun.  Really, she does.

Look at that muscle tone!

Admire the hand placement.

Even at a birthday party where three-year-olds get amped up on Costco cake and become increasingly irrational, who wouldn't smile with a daughter like this one? Costs of renting a bounce house facility for a private party - more than some say is appropriate for a toddler.  Seeing her airborne?  Priceless.

Hello my lovelies!

I owe you guys, big time.  I have been a bad, bad blogger.  A good blogger may be many things, but most importantly - she blogs.  At least she shows up and posts appealing pictures.  A few of you have kindly, as requested, sent me the post that got away (it was very big, very juicy, really outstanding in every way - just like the fish that got away . . . except I didn't see it skipping off into the sunset waving the finger) and the nice thing to do would have been to say thank you by actually putting the post back up.  But since the last time I posted I have attended many weddings (three), had work keep me in the office until after 10:30 one night last week, I have taken the girls out for fun and wholesome activities involving fresh air, live music, and food from many cultures of the world  (we had one meal with food from the cuisine of El Salvador, Thailand, Vietnam, and Sudan) and we became so unfortunately full that we had to skip the churros (Basque churros, not Mexican churros) and the baklava of Bosnia (that really and truly was unfortunate as Bosnians really do know something very special about pastry).  So I have excuses, and they are many and varied.  But you didn't come here for excuses.   Let's give give you a look at what you really came here for.

I taught her to splash in puddles, in the name of physical therapy, of course

I've been reflecting a lot on where we are two years out from the CP diagnosis. CP awareness Day was "celebrated" a few weeks ago.  I meant to post, I intended to post, hell I even drafted a partial post.  Right now I am absolutely stunned by where we are today.  Two years ago, we had just had the diagnosis confirmed.  We started working on getting Hannah to sit up on her own and to roll over, and we started using the Bamboo Brace.

One year ago, just before Easter, Hannah started to crawl, and then crawled her way through a wet and chilly Easter Egg hunt, because "ooh, shiny!" is hard wired into any girl brain, damaged or not.  See for yourself:

A few weeks later she was walking. 

And the baby that looked like this, once:

Turned into this child:

Most importantly, her joy knows no bounds.

Hannah had her Early Intervention biannual testing last week, and managed to now score within in the average range of all areas tested, and in the above average range for . . . are you ready? . . . fine motor skills.  Take that stroke, you asshat!  Really what these results mean is that the testing instrument is not particularly well suited to make assessments about smarts kids with hemiplegia, and that testing of two year olds generally is not incredibly accurate.  Obviously my daughter is indeed smart and well suited to live in Lake Woebegone, where everyone is above average. 

A-B-C, easy as 1-2-3, simple as do-re-mi, baby you and me

Note how she tries to take the camera with Righy? That's my girl. When you have a beverage in your hand, just get what you want with the other. I's no big deal, when you are Hannah the Bold.

Only six months to get back up on that horse again

Six months after Hannah got this hobby horse for her birthday she was finally willing to take a little ride in the basement.   Right after she tried to stick some keys in an outlet.  Age two is evertyhing we could have hoped for. 

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.

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. 

Occupational therapy - constraint casting at three weeks

Tulip, Welcome to Holland. Holland, meet Tulip.

We'd had some trouble getting Rocky to hold still once we changed dates/handlers. Our OT had us working more on developing protective movements such as getting one's arms out in front or to the side as necessary, and that was beneficial work, but since Rocky stopped stopping consistently, we weren't getting as much work done with grasping objects. So, we switched to Tulip, and lo and behold, yet another cute young man showed up to volunteer as the side walker. See the results for yourself.

Boys! Tasty! He is all mine.

She knows all her colors!

I can move objects with my mind! Er, um, right hand.



The walk of triumph.



Look out Holland, we have some tromping through your flowers to do.  Heh.