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.

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.

Congratulate yourself today - you didn't give up!

Already the post title sounds trite, I know, but it is really what I want to say.

You did it! You didn't give in to the stress, the worries, the anxiety about the known and the unknown that lie ahead for you and your family, and the to-do lists, and the unending needs of those you provide for, and the fact that the long and winding road looks really long sometimes. You didn't decide that it was too much. You didn't let negative thoughts and self doubt sink your boat. You didn't feel the weight of the burdens you carry and decide to put them down. You kept going. You did your many, many jobs, and you went looking on the internet for help and inspiration and ideas from people who get it. You deserve to feel good about that. I think you should feel good about being you today.

Brought to you from a gloomy person trying to claw her way out of the abyss, who today, sees joy ahead, and hopes you do too.

Talk to me, TED

Today, after spending an unhealthy amount of time reading about the people in that religion that the guy from Grease and Saturday Night Fever and also the guy from Risky Business were in, I decided to stop looking at distressing things and instead, focus on the positive.  I went to TED.  When I didn't go to bed, because I couldn't sleep any more, at about 4:00 a.m., that is.  I love TED!  Here are the things I learned. . .

Attititude
Awareness
Authenticity

will help me feel better, from the guy who made the 1000 Awesome Things Blog.  Better still if I can pull out a wedgie when no one is looking.

Tell me your favorite TED talks and I'll tell you more of mine.  People who don't sleep well look at the Internet a lot, and I bet we can help each other on this one.

World Mental Health Day came and went

I didn't celebrate it.  I am hanging on to my mental health as best as I can, and sometimes I think there has been a bit of healing in little fits and starts, but neither grief nor wellness follows the notorious stages as described by folks in the helping professions.

Take denial, for instance, as it applies to dealing with death. I had a boatload of denial in the weeks following my husband's suicide, but then less. However, denial comes back but not in good ways-now I feel denial that he ever lived.  My kids burst out with things like "I'm starting to forget what he looked like!" followed by tears. I feel reluctance to get rid of the last bits of paper with his handwriting in case that means he gets totally erased himself. And this from someone who is not wholly grieving his passing because I am actually quite angry with him, still. I sometimes wonder if he was really real, at all.

This is where my existential angst gets me stuck - my kids didn't exist, and then they did, and even if it kicked my butt the experience of being a parent has been amazing...yet now the other parent exists no more. Wha??? I don't get it. No wonder my head hurts and my heart aches and my hands shake. All this bursting into existence and snuffing it out leaves the pile of consciousness that us "me" dizzy with the breathtaking power of it all.

So as usual, a folk song plays in my mind, from the inestimable Cheryl Wheeler.


Life is short, but the days and nights are long
Time will heal all these wounds
Some day soon
I'll be rising I'll be strong

But now I'm loosing all my battles
Now I'm down and dropping still
And this snow's blowing through
Like some ghost
With this blue I know too well

Broken hearts keep on beating just the same
So I guess I can too
Go through these moves
Facing forward, walking straight

But now my glance keeps drifting downward
Now my feet can't find their way
And this cold's creeping in
Through my bones
Whisperin it's here to stay

I'll bide my time, like there's any other way
It moves too slow, moves too fast
It's gone and past
And stopped entirely today

I know there's light on some horizon
But I can't see so far ahead
Patience and grace, blessed is love
I'm loosin my faith
In most of that stuff those wise men said

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.

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!

Eoster: behold the power of a candy filled egg accompanied by plastic tat in large quantities

It may have begun as a Pagan celebration. Bells might fly from Rome to give French kids chocolate. I will possibly go to hell for giving out Easter cards with a cartoon style drawn bunny handing Christ on the cross a decorated oeuf saying "have an egg, you'll feel better." I suspected the Peeps and Hallmark folks had a hand in blowing this whole thing out of proportion. I don't know why I fell for it for all those years before I had kids but now I know: Easter was created by occupational therapists.

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. 

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. 

Hell's bells, I don't know where the time has gone. Mo specifically asked me to write about the results of constraint therapy for Hannah, and so I will, but first I'll give my excuses for why I am so very absent. I had meant to blog from Disneyland, but I was really in a lot of pain after oral surgery to extract a tooth and begin an implant process, so every time my kids were down and I could rest I didn't feel like getting on the computer. On the night before Thanksgiving, I slipped on ice carrying Hannah, two glass bowls and the school photos, all of which needed protecting and so I torqued my body in the air to not land on Hannah and thereby tore my hamstring.  When folks picked us up and dusted us off the baby wasn't even damp. I win! I really seriously injured myself though, so now when I get my kids down in the evening I need to lie down and try to elevate my hamstring/thigh above my heart to reduce swelling (not easy). So, I beg your pardon if I normally comment on your blog, or if I normally give you something to read, and I've been letting you down.  I look forward to things getting better in six to eight weeks.  Yeah.  Good times.


Hannah did three and a half weeks of constraint casting. The half week was added because I wanted someone professional to take the cast off, because my daughter is a smart cookie and if we do this again in six months I didn't want her to remember that I could take her cast off, I wanted it to be done by a therapist. We definitely see improvement in the use of her affected hand/arm. I would absolutely recommend this therapeutic approach. Hannah was upset but less so than I expected. I was a bit wound up for a while before the cast was put on because I thought she might cry for days and we would wimp out and give in and take it off. She really was fine at the outset, but she did have difficulty sleeping, and staying asleep, largely because the cast literally weighed ten percent of her tiny body weight. Those of you with bigger kids might not have this issue. My treating therapists have a child wear the cast and simply go about their daily lives, we didn't do the six hours of special OT that make up the basis of some programs in other parts of the country, so this was probably a lot easier. Hannah's biggest challenge was with eating, she simply would not use her right hand to put food in her mouth and she seemed indignant that she would be fed like a baby, but she did let us feed her. I was flexible about letting her use her binky more than we had, since I've been trying to reduce use and encourage more speech, but she foxed me by getting her day care minions to put her binky in her mouth. After a morning therapy session I dropped her at the day care and stayed to eat lunch with her so of course I fed her.  Her little friends gathered around us to monitor the mom in their midst. I kept the binky clipped to her shirt so she'd have to use her right hand to get her binky in her mouth. When she would try to do it the movement really exposed that supination is something that we really need to work on but she developed a work around. I saw her look at her two favorite boys, and say "binky" and they both leapt in and tried to be the one to get the binky first and get it in her mouth. Minions! At age two! She has since moved to the next up aged class and now is at the bottom of the pecking order, where the toddlers take her binky out of her mouth and say "binky in your pocket, Hannah!"

Results: extraordinary. the first week after removing the cast we were in Disneyland so I couldn't observe much in the way of the results because Hannah was not often in a place where she might pick up smaller items. I did buy some toys to encourage bilateral tasks - cookies in little plastic "jars" and things of that nature and we worked on those in the car. Now that we are home, I can see more of what she is doing with her affected hand. What is most noticeable is that she uses her hand much more automatically, or when necessary, she uses her hand to hold the thing she picked up first then picks up a second item with her good hand. She is much quicker to use her right hand to balance a cup or bottle, or hold a bowl of Cheetos while she feeds herself with her good hand.
 

Go Righty, go, get that foam number. 

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.

Constraint therapy, the middle

Hannah is still winning. Mama still whining. Nobody got a black eye from being clubbed with the cast yet. Success!



We have seen Hannah do many things with her right hand that she would never have done had lefty been available to her. Obviously the real measure of the technique's success will come when we see what stays with her later, but she is racking up experiences of Righty getting out there and doing things so I am sure neuronal pathways are being laid for future experiences to further the neuronal transmission, and so on. Lord Honey tried to get me to do something the other day and I said "no, I'm rewiring" because I was holding Hannah and doing something or other getting Righty in the game.  We've been using the Lauri peg board shape sorter, and I think Hannah knows all her colors and shapes, the tricky bit is picking up a dropped shape that hits the floor, while getting one off the sofa is fairly accurate. The first few days she wouldn't try, she might just club it with her cast, and now she'll work at it, usually til she gets it. She is turning pages more in books we read, which I've been moving her hand to do for 18 months, but now I tell her to turn it and turn it she will (board books, obviously). She normally carries Ken around, but Barbies are heavy enough that you have to hug them, our better doll figures are the Playmobil people and the wooden doll family members you get at the crunchy toy stores who can be grabbed around the body or at least the feet by a hand as small as Hannah's.  Our real failure is food, she will not make an effort to self feed with Righty. At first I could get sandwich chunks in there but now she squawks to be fed like a baby bird, and it makes her angry to be fed at the day care, possibly she doesn't want to look babyish with her friends? So I told them to bribe her with chocolate milk, because I am full of awesome parenting techniques like that. Sometimes I get a broccoli floret in her fist and she'll eat that, if it is well buttered. She can't hold her bottle, and her sippy cups are all too big. We get some success with the sippies with handles and she holds it with Righty and rests the weight on her casted arm, since it is so much stronger.

If anyone gets here just about to do this, or is thinking of it, get in touch with me and I'll give some tips if I can, and maybe a care package like sweet Mo sent.  See the beads, Mo?  I wish I had more shirts with big sleeves, but baby's big sister is only slightly bigger so we struggle even to find jammies and shirts. 

Right now, I'm glad we are doing it, but when she lies about draped across furniture looking wiped out from carrying ten percent extra body weight all day, I really look forward to taking the durn thing off.  And I am glad no one has a black eye.  Knock on wood.  The girl has a wicked left hook

Constraint therapy, the beginning

Universe 1, Ginger 0, Hannah Eleventy zillion

Just when will I learn to trust my child? So my tension over constraint therapy has been building and building, while of course, she hears me discuss the concept but doesn't really know what is about to hit her, and I try to keep my conversation about it when around her all upbeat and light. She flailed and screamed while the cast was applied, had quite a good wail afterwards as she tried waving around an arm that was suddenly much heavier and bulkier than normal, then sat down to do OT with Tara, who had just applied the cast. As we left, Tara got a thank you, two hugs, kisses, and a wave bye-bye with Righty. Then we ate lunch at Shriners' cafeteria and she was doing so well, I took her to her day care so her day could be as normal as possible. What gives??

I wish they would have told me a few things of interest: have on hand shirts with bigger than average sleeves, or extra short sleeve t-shirts.  Have on hand some larger than average pajama options, gives tips on how to convince a two year old that "no clubbing" means no hitting mommy in the head with the cast while sporting a smile on her face.

So these pix are from Friday and Saturday and tonight we finally caught her in her armchair, already I need to update and show off some more as we watch Hannah pick things up with her right hand.  When she tires of using her hand, she just lies down on top of what she wants and grabs it with her mouth - whether it be a cookie, a binky, or a used Cheeto.  She is obviously fatigued though, since I think we added ten percent to her body weight and stuck it all in one place, so she has to lie down a lot, and she is eating at least ten percent more food to carry that extra ten percent in weight.

As I said, I should just trust Hannah to rise to the occasion and not be so worried. Here she is about 48 hours into constraint therapy trying to get her balloon string with Righty - there are more successful attempts that I filmed but I don't have the patience to upload longer videos to YouTube. Obviously, once again, Hannah is a raging success at everything she puts her hand to.

Ability Found, for ability lost - pulling a The David Cook for charity

The history of why I do this is found here and here.  Aunt Becky at Mommy Loves Vodka had herself quite a lot of fun tricking the Google SEO algorithm into putting her blog at the top of the list for searches for John Mayer, on account of him being douchey and all, so, having had all that fun, she challenged her readers to do something similar for charity, harnessing the power of the interwebs to promote awareness of charities that matter. 

Ability Found is local to me, but assists people far beyond Salt Lake City. 

Ability Found provides the opportunity for everyone who is disabled to receive the right equipment to become productive members of society.These disabilities include conditions such as cerebral palsy, spina bifida, multiple sclerosis, stroke, cancer, spinal cord injuries, gene abnormalities, hydrocephalus, amputations, diabetes, congenital impairments, heart disease, and lung disease. The medical and rehabilitation equipment we purchase is vital to our clients being involved in society and includes power wheelchairs, power scooters, manual wheelchairs with custom seating, handicapped vans, walkers, gait trainers, standing frames, bath equipment, continence supplies, braces hospital beds and pressure relieving mattresses.

I personally vouch for Ability Found because my daughter's favorite PT, commonly called The Angel of PT at my house, Michael J. Workman, is one of the key service providers who matches up people with equipment they need.  Michael J. Workman, a god among physical therapists, is also the inventor of the Bamboo Brace, for which I credit much of my daughter's extraordinary progress battling CP and the effects of an infantile stroke.  Michael and others like him go to a person's home or work environment, assesses the need of the individual, and looks for the right equipment to give a person greater freedom.  How sweet is that?  And they give their stuff to people for free!  Ability Found was started by a family whose son was severely injured due to a lack of oxygen at birth, and thy turned their experience with tragedy into one of hope, when they realized the needs that so many have that might be helped with medical equipment.  It all runs on donations, and Ability Found can be found right here, so you can check it out and give 'til it hurts. 

The shoes that keep on giving, the angel of PT, and why I blog anonymously

These shoes came to Utah from Virginia, courtesy of sweet Oia, who uses a right AFO and is a year older than Hannah. Don't they look cute? Hannah loves her new shoes - I think they are much lighter and more flexible than those we got with the AFO, and suddenly the size fives were just a little small. Voila! We broke out these, which were sent to us months ago by Mo, and just waiting for Hannah to fluff up and need them. I had to modify the strap on the left since at the time Oia wore these she had a left AFO too, but I started the job and stuffed the toe with cotton (Hannah stuffs it with wood chips every day at school) then where I messed up the strap I took it to Eric at Shriners' who fixed it up in three minutes with a cushiony strap on the bottom that takes up some of the extra room in the shoe, and we are off and flying. Mo, you did right by us! Maybe we can work out something where every now and then I buy you a new pair and you keep sending me your right AFO modified older sets? Now, got any snow boots? The Angel of PT says they way I keep Hannah going gangbusters in winter is to carve out snow steps and have her climb up to get to slide down.

Observe the shoes in action.



I think I've mentioned before that our most influential PT, the one who we met first when our CP journey began, who created the Bamboo Brace that I think has been enormously beneficial in Hannah's development, should properly be referred to as The Angel of PT. Not only does he work privately as a PT (how I got him), takes Early Intervention cases (he moved me to his caseload when another child aged out, saving me mucho dinero), runs the Spina Bifida clinic at the local pediatric hospital, and is a wheelchair fitting specialist, but he also works for Ability Found, a non profit organization bringing people and assistive equipment together. I mentioned to Michael that my mother was in poor health and having decided to stay in her home of 37 years, she needed two power chairs, one for each level of her house. He offered to see her and help determine what needs she had and what chair would best suit her and her environment, and that he could help her find a gently used chair at much less cost than a new piece of equipment, or if what they really wanted was not yet available he'd loan her a chair until he got he what she really wanted. Like many querulous old folk, she wanted help NOW and with him being busy (he is) and her being busy (being retired and old) he told her if she insisted that she had to see him on Thursday morning last week, he could only do so by bumping my Hannah's appointment. She didn't bat an eye and said yes, she'd take Hannah's slot. And she never called to thank me for giving up Hannah's spot so she could pursue her own needs.

You can be like Mo, who sends her daughter's shoes to a stranger from the Internet, you can be like the Angel of PT who runs himself ragged being all things to all people and making a huge difference in literally hundreds of people's lives, particularly for my family, or you can be my mom, whose needs are always the most important.

The video you see above is of Hannah, playing in the park in Oia's old shoes after our make up visit with Mike that he squeezed into his Friday schedule because he felt bad bumping Hannah for my batty old mother. He was too nice to say anything other than that he had a nice time meeting my parents. I said she was an old bat for not even feeling bad about bumping my baby's PT time. And that, my friends, is why I blog anonymously. I will be less bitter and annoyed later, but as Nanci Griffith sings "Maybe tomorrow, but not today!!"

Hippotherapy #12 - and it happened on Wordless Wednesday