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!"
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.
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.
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.
Argghh, just a simple little cold/flu, the ubiquitous second week of the school year bug in all its minor chord glory, is here to rattle my cage in my new single mom state. I have decided that Hannah ate enough, is large enough, that the fact that she threw up does not mean we need to race off to the Children's Hospital in the middle of the night, getting a blood draw, IV and having her catheterized to check all relevant levels of stuff that matters in the world of metabolic disorders.
This is one of those places where my late husband was in some ways helpful, in that he didn't get so wound up with worry and count approximate food vs. vomit ratios, and yet, I always knew that if we separated I couldn't count on him to get Hannah to the hospital should she actually need to go, and I could lose her to his lack of worry. And still I hated having to worry so hard about her since I had to worry for the both of us. The three times I have taken her in to the hospital with vomiting and illness were all times where her test results showed she was just beginning to experience a metabolic process that could indeed be serious and ultimately fatal should she not get her glucose into a normal range. I know at those times I did exactly right to take her in, and get a glucose IV that would load her up and keep her going until her appetite returned as the virus ran its course. But what about the times we just rode it out and treated her like a normal child who has a brief illness? Am I risking her life when I don't take her in? I know from the patient education we have received that she doesn't always need intervention and the best person to gauge that is her caregiver but I don't really trust myself to get it right, even though history has proven I do. And so anxiety kicks my butt, every single time her little regular virus with a high fever comes calling. Every. Single. Time.
Last night I kept her in my too large bed, felt the heat waves coming off her body, and gave her sips of flat Sprite, apple juice, and water in between hurling into my stock pot that I kept at the foot of my bed. But it always seemed that every sign showed she was not in distress beyond expected levels for vomiting and fever, and if I could get her to keep high calorie fluids down by morning we could make it through. And we did. I imagine she will not go to school tomorrow either, and hope we both get more sleep tonight, and today I have one more example to tell my PTSD addled, anxiety riddled mind that I actually am up to the job of mothering this child. And that may sound more credible tomorrow.
It was a lovely, family oriented holiday weekend, but it has taken the whole week to recover. Because I was painting a wee picture I chose not to apply sunscreen when the sun finally came out, as I preferred not to get my hands all gummed up with goo that might smear the watercolor pencil. As I result, I love my painting but my face got so burned that my eyes puffed up, one more so than the other and leaving my right cheek extending forward enough to show up in my vision in a manner akin to an extra nose. So I look wacky in the way that I feel inside! Yay, me!
The vista looked like this from our camp. I didn't include the large number of sheep who paraded back and forth through the valley multiple times a day, guided by medium sized dogs we decided must have been Not So Great Pyrenees since they looked Pyreneesey but were not great in size.
Looking down on the sheep reminded me that people who don't approve of low cost grazing on public lands sometimes call them land maggots, but I enjoyed their chorus of simple conversation. Hannah said, "I would like to go to the sheeps, please" and was disappointed that the sheeps didn't want her to examine them. It was lovely, relaxing, time out of time, but oh my goodness I AM TIRED.
There ought to be a mathematical formula for that but it escapes me. We celebrated multiple times in multiple ways, including violently colored cupcakes delivered to her day care / summer camp class, sure to wind up even the most peaceful of kiddos. There is a pile of real angst here, that for all the critical thoughts I had for Lord Honey not doing much to help me help Hannah, at least he showed up to the party on a holiday and now he doesn't do that.
For reasons that escape me entirely, I can't load pix directly from my ipad so I will have to do a bonus birthday post when I can jump that technological hurdle, but the fast facts are:
The Sophia the First talking castle - big hit
Cheap clip on earrings and amulets - huge hits
Bouncing at Jump Around Utah with the pals - another birthday party success
For me, my kids' birthdays are always a time for review, and so I looked back to Hannah's first birthday post on this blog, entitled Lucky, and indeed I know that I am. I love you, Little Bunny.
Perhaps I shouldn't try to pretend that my life is of Dickensian proportions in any aspect, but that phrase just seems to describe the place my head goes quite frequently. I think I might always look back on this as a time when my girls were so delightfully lovely, so amazingly situated between babyhood and childhood, so tasty they are very nearly edible, and yet, I will also look back on this month as a time of cleaning up urine with enough frequency that I think perhaps I was cut out to be a medical assistant, after all. And I always thought I couldn't do that job! Hannah is suddenly much more grown up now, shouting to all who will listen that she's got panties! and yet she is still so very much just a big version of a baby, being still so capable of treacherous body movements that are intended to harm the person who carries her. If she can arch her back like that she does NOT have limited trunk control. It takes skill to do that kind of twist out of a parent's arms while kicking maneuver, I think. I am behind in every single area of my life. Each and every one. It is true that I send out quite a few Christmas cards each year, and I will do so for 2011, but that doesn't mean I have taken the cards received in 2010 off the mantel. No, not kidding. My friend doesn't like that I run late all the time but how I am supposed to know that I need to build time in the schedule for someone to knock her bowl of Ramen noodles (with egg, for extra glue-ability) on the floor right when we needed to get out the door. How? And yet I am doing something right, because the current most common phrases spoken in our house between the two girls are "you my best friend!" replied to with "you my best friend too!" (let's ignore that it often devolves into a fight where each girls insists "NO! You MY best friend!!" emphasizing the my and completely ignoring the fact they are really in agreement but if they acknowledged that then they wouldn't have anything to fight about.)
Things of randomosity:
A dream I probably shouldn't tell you about, but I will . . .
Which had me galloping around a room, thinking I am riding a horse, then realizing I am only slapping my own ass as if I were slapping the ass of the horse I rode in on . . . and then eating my birthday cake without using my hands, possibly in the presence of a man with whom I was about to do the deed. Some of these events have roots in history, but that doesn't mean I can explain how it all came together.
Recently, at my house . . .
My husband spent the dinner hour hogging my laptop again, looking at videos posted to YouTube of seven year old girls operating track hoe / back hoe/ big machine-thingies. I wondered how he got there and he actually started with "truck crashes" and the internet just led him to the seven year olds driving, really.
Current trends . . .
Claire now asks that her YouTube video playlist (previously limited to Tom Petty, Nick Kershaw, Alice Cooper and the Red Hot Chili Peppers) now has expanded to more age appropriate selections such as "Mana Mana" and Claire can always get the "do do do do" just right.
Often when I am avoiding something I busy myself in reading, which has become increasingly harder as my children develop more needs that must be met. In the last four weeks I have reread all but one of the Harry Potter books and now am working through The Tales of Beedle the Bard. When I needed one to help complete the set, and the girls and I went to the library, Claire saw that I'd found another very large Harry Potter volume, and looked me squarely in the eye and said "Daddy is not going to be pleased to see you got that, Mommy." Horrors! How can she (or he) have turned into the book police while I wasn't even looking? So just exactly why am I off the blog and in the books? I think there is something I want to write about, and think about, and process, and I am self censoring. But not for much longer, I think. It might just come bursting out soon. Stay tuned.
In the meantime - Hannah has turned into someone who goes up and down some stairs without always holding onto something for support - which both delights and terrifies me. She is also now someone with whom one has conversations. Her words are still second child murky, and she doesn't have Claire's startling ability to communicate at a level years above her age, but she can be well understood - and often says things that are abstract, not related to things going on in her immediate environment, and uses words I didn't know she knew. I wish her speech were more clear, but I am so enjoying talking with her these days. She showed me a craft she'd made in preschool today - a spider made from a piece of an egg carton saying "looka mah 'pider!" "Oh, I love it Hannah" I respond and she looks at me with total delight and says "(s)pooky!"
And in other news, Claire's father told her of an idea he had for something and Claire looked at him with approval and said "that's appropriate."
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.
We've been watching these people do stuff like this:
To be fair, Lord Honey found Hannah on the climbing wall after she disappeared at the door of the day care, with two feet and her good hand on the wall, so he told her to use Righty too and she did and she stayed up. Stroke victim? I don't think so.
We've been going through a rough patch, a busy patch, a heat wave, and a period of extreme change and growth. I had dental surgery to pull a tooth, implant some bone sand (that has an irritating way of coming up from the depths when I am not expecting it, and place an implant. Claire had one of her crowns become uncomfortable necessitating a trip to the emergency dentist who prescribed antibiotics that have Claire living on the potty and jamming up the works with toilet paper (and now I know why parents count out squares of paper - and it is not about saving money as they always claimed, but preventing the need for plunger use). Hannah has become an actual chatterbox, and Claire is about to start kindergarten. I fired our hippotherapy provider and Hannah ages out of Early Intervention in about two weeks. I think she is ready, but am I?
Claire is eerily like me. She asked for her treat after dinner tonight. Daddy asked what she wanted and she told him to pick something. He presented something (a nice something) and she said "Good try, but take that back. Bring me the other one." She is still planning to rule the world.
Hannah is in love with the bus. Her group is not really in full summer camp but they get to do water play two days a week at school and they have 8 field trips spread throughout the summer where they get to join the older kids, and they ride the school's bus to get there. From the first step on the bus, Hannah has been over the moon. The morning after her first trip, her first words of the day, spoken with her face up close and set to max intensity and her eyes locked to mine, were "go bus." She has said it every day since then, innumerable times. If she is introduced to someone, she says "go bus." If I offer her the phone she says "go bus." I am pretty sure she is dreaming of the bus. "Hannah go bus. Car-car go bus. Mommy go bus. Daddy go bus." Sometimes she gets hit with a wave of glee and jumps in the air while her arms flap about as she squeals "B bus!"
The girls tackled Mars.
I am, despite my new haircut, which is indeed cute,
absolutely capable of making a fool of myself in public, such as tossing toilet paper at a basket at the day care summer picnic to try to win $100 off my tuition, I didn't win, but look at that Charmin fly! I am a natural when it comes to tossing toilet paper. The statute of limitations has long since run on all those spitball incidents in grade school. Really, I am a lawyer, I know these things.
This post made it into the drafts folder about six weeks ago and never got further out than that. See what I mean about being a blogger who doesn't blog?
Doesn't she look all fresh and dewy? And yes, she is the same color as the bathtub, I can't really deny that. OK, there is a drool driblet on her chin. There often is. My husband is in denial. I tell him it is no longer age appropriate to drool, this means something else other than baby-ish-ness. She is two years, nine months and three weeks of age, roughly. We'll talk about this later, along with the lisp she has developed when she says "s" sounds. However, I don't think there is another child in her day care class who has complete mastery of the alphabet - upper and lower case, as she has for three months. So bite me, stroke, drool, and the horse you rode in on because we are here to kick your whoseewhatsee (this is a family blog, except when I feel like saying something more colorful). Please get some popcorn and enjoy the show.
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.
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.
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.
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.
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.
Mother of two, step-mom to two more. Married. Work in the theatre of the absurd, behind the curtain, and pulling the strings. First daughter was a preemie, new Baby has MCADD, or Medium Chain Acyl-CoA Dehydrogenase Deficiency (Mighty Crappy Aggravating Disorder) and mild Cerebral Palsy, because the fun never stops around here. Foggy mind. If I wore a button it would say: Lose mind now, Ask me how! Things you might find here: bits and pieces of fluff about babies with wacky disorders, mommying, knitting very slowly, and stuff I don't say at work. If you want to send me free stuff just email me at gingerbblog at gmail.
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