Tuesday, September 20, 2011

typity type type.


it’s hard to fully encapsulate in words the feelings that are going on right now; the last few months have been a roller coaster ride full of every possible emotion. from one appointment to the next we seem to have more questions than answers. some days i feel like i’m on autopilot waiting to check the next box off the list, waiting for the next appointment, waiting waiting waiting the next the next the next. i’m having a harder time just enjoying “the now.” i need to snap out of this, i need to enjoy the now instead of waiting for the next thing to come along. snappity snap. things could always be worse and i’m oh so grateful for my life, for my babies and my darling love of my life, brendan. i want that to be said. this isn’t a woe is me post. this isn’t an oh i feel sorry for erin post. this isn’t anything of the sort. this is me. sorting out what’s going on. my feelings. my heart. on paper.

i’ve been meaning to write and put all of this into context. into an easy to understand pie chart or diagram of sorts. but that won’t happen. so typity type type. maybe by doing this it’ll untangle my own brain. but right now it’s so jumbled up in my head. one minute i want to hop skip and jump down the street happy happy, the next i want to curl up into a ball and cry myself to sleep and ask why? why? why? but that doesn't really help anything does it? also: a first for me, i bought a big calendar to stick on the fridge to write things down and a day planner for my bag. i used to store all the info i needed up in that old head of mine, but now? too much going on. so here we go. i shall bring you up to date:

ozzie’s actual condition is called:
spastic diplegia and hemiplegia NYD. as per our pediatrician.

a la wikipedia: Individuals with spastic diplegia are very tight and stiff and must work very hard to successfully resist and "push through" the extra tightness they perpetually experience. Other than this, however, these individuals are almost always normal in every significant clinical sense. When they are younger, spastic diplegic individuals typically undergo gait analysis so that their clinicians can determine the best assistive devices for them, if any are necessary, such as a walker or crutches. The main difference between spastic diplegia and a normal gait pattern is its signature "Scissor gait"[1] — a style that some able-bodied people might tend to confuse with the effects of drunkenness, multiple sclerosis, or another nerve disease. The degree of spasticity in spastic diplegia (and, for that matter, other types of spastic CP) varies widely from person to person. No two people with spastic diplegia are exactly alike. Balance problems and/or stiffness in gait can range from barely noticeable all the way to misalignments so pronounced that the person needs crutches or cane to assist in ambulation. Less often, spasticity is severe enough to compel the person to use a wheelchair; in general, however, lower-extremity spasticity in spastic diplegia is rarely so great as to totally prevent ambulation — most people with the condition can walk.
Above the hips, persons with spastic diplegia typically retain normal or near-normal muscle tone and range of motion, though some lesser spasticity may also affect the upper body, such as the trunk and arms, depending on the severity of the condition in the individual (the spasticity condition affecting the whole body equally, rather than just the legs, is spastic quadriplegia, a slightly different classification). In addition, because leg tightness often leads to instability in ambulation, extra muscle tension usually develops in the shoulders, chest, and arms due to compensatory stabilization movements, regardless of the fact that the upper body itself is not directly affected by the condition.

moving on.

we’ve continued and will continue to visit our physio and occupational therapists at least once a month. if we (parents) or they (therapists) feel the need to increase the number of appointments scheduled - we’ll go ahead and schedule more. for now? the activities and exercises he participates in during his therapy sessions are similar to what he’s doing at home. ride-on toys, squat to stand exercises, kicking balls or bowling pins, exercises to really help out his core strength and quad muscles - these types of activities that he does in physio are similar to what he does at home. same goes for occupational therapy: anything involving his two hands together - sticker fun!, lacing shapes, opening plastic easter eggs, pull toys - he needs to get his right hand to work along with his left hand. and he totally has this ability, we just need to get him to use it and practice it more. if his right hand continues to stay clasped shut (which i've noticed has been improving as of late), he may be required to wear a splint - to keep his hand splayed to improve the muscle tone as well as his grasp.

his walking has improved but he still walks with a limp. he still falls a lot. some days are better than others. while walking he does not like to hold your hand (this silently and totally crushes me). but in my opinion (since he can’t tell me) i think he does this because he needs to have his hands readily available at all times. when he does fall, which is often enough, he uses both hands to stop his fall. okay. fair enough. but it still makes me sad that he won’t hold my hand.

alright. with the physical basics covered we move on to appointments. way back in the late winter/early spring of this year we noticed ozzie (then 19mos) hadn’t met the milestone for walking. we all chalked it up to a number of excuses, “he’ll walk when he’s ready.” or “oh he’s having more fun crawling around on the floor!” or “he gets to where he needs to, faster! by crawling.” when he was 20-21mos we visited a developmental clinic being held at an early years centre in our city. from there we were referred to our lovely therapists. during our first physio appt, our pt referred us to a developmental pediatrician (in may 2011). not having heard from the developmental pedi - i took it upon myself to see our family dr. who then referred us to a regular pediatrician. we met with him in august and he was a lovely man with a british accent. don’t british accents just make a person sound more refined and knowledgeable? i think so. but cerebral palsy isn’t his area of expertise, tho he was the one who gave us the diagnosis. he thought it best to get ozzie’s brain looked at and we were booked into a local hospital for an mri. he also put in a referral (requested by our pt/ot) to see a pediatric orthopedic surgeon - to make sure his hips and legs are developing normally. in the meantime we had ozzie’s hearing checked as his speech was somewhat delayed. he’s now putting words together in small sentences and though i don’t see it as a huge concern, we are on a waiting list to see a speech language pathologist.

the mri:
last friday was our big day at the hospital and it went well. however, 5.5 hours at the hospital you’d think i’d have time to read a few magazines, no? well, no. there were questionnaires to be filled out, papers to sign, baby-child to carry, to distract, to sing to. and then the sedation. gulp. having to physically hold down your baby-child so a mean lady with a sharp needle (ok. wait, wait, wait - she was an extremely lovely lady nurse) can jab his hand so medicine can go through his veins so they could see his brain - was not my favourite part of that day. seeing him in that hospital gown almost killed me. but not from cute. from sad. you don’t ever want to see your child in a little wee hospital gown. through it all, i have to say, ozzie was a trooper. when he finally woke up - he was a feisty one, trying to rip the iv out of his arm himself. cue: playmobil catalogue. that handy book helped me out many times that day. the only time i did read my own magazine (only one article btw) was waiting for ozzie to wake up. he was wobbly and woozy the rest of that day scarfing back some donut holes, blueberries and water on the ride home. the results came back. but not good or bad. just more unanswered questions. we are now being referred to a neurologist/neurosurgeon to fill us in as the pediatrician wasn’t up to snuff with reading mri results.


appts to come:
pediatric orthopedic surgeon: wed. october 19th
neurologist/neurosurgeon: hopefully same day as pos
developmental pediatrician: april 2012 (no date booked as of yet) <--frustrating to the NTH degree. this is where in real life i swear a million swear words in foreign languages so my kids don't know what i'm saying, obviously, regarding this appt... urgh $##*%$&!_*$*@*!!!


at this point we are guessing this began even before the day he was born. when he was just a bunch of cells, in utero. or maybe during birth? it was a completely normal birth. quick. but normal. from what i remember anyways. maybe we’ll never know what actually happened. to date: this whole ordeal has been the single most awful thing i’ve had to carry and now deal with. you go through a grief process of sorts at first. you have such grand expectations and dreams for your child. and we still do. he'll be and do whatever he wants to and we'll be right there beside him encouraging him all the way. but of course you have doubts and this lingering fear, which more often than not (for me anyways), happens the closer we get to his appointment dates. i really have to learn to just let go of it all and move forward. this is our new normal now.


we are lucky, we really truly are. there is so much good going on, with the day to day stuff. he's thriving in his environment surrounded by love and horseplay. on top of it all, ozzie's a loveable, creative, sometimes snuggly, very independent little dance machine. as his parents, we are here to guide him, encourage, laugh and cry with him, teach him, and ultimately love him unconditionally. and so far, this is what we’re doing. i couldn't imagine our days any other way.

and if you made it to the end of my rambly post, thanks for listening, i really do appreciate the love.

9 comments:

  1. love. out here listening. i'm sorry you're having to bear so much heartache.

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  2. I read it all and am also listening. Never apologize for going on and on, this is your space and your story to tell.
    Parenting is so wonderful and hard all at the same time.

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  3. ^^ ditto what Jamie said. Hugs and love and peace to your family. He is a smart, beautiful and VERY loved little boy.

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  4. Always here to listen, we went through a time of uncertainty also, probably one of the most frustrating things ever is when there is no definitive answer. With all of our appointments I finally understood why what doctors do is called practice, it's one huge guessing game most of the time. There is absolutely no need to apologize for typing what's on your mind.

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  5. Oh love. If Waterdown and Edmonton were close, we'd skip down the street and we'd curl into little balls and cry. You are a strong mama, and a good mama. Ozzie (and Miles) are lucky to have you in their corner. Just remember that you have us in yours.

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  6. hugs and love and big internet wishes for brighter days. you are such a good momma to fight for ozzie so hard ... he is so loved.

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  7. What a reality to adjust to!

    It is my sincere hope that the mobility issue is a little speed bump, that he overcomes it and has no other problems at all.

    Wishing you strength, doctor appointments that don't take too long to come, and a happy resolution.

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  8. thank you to everyone. it's been an overwhelming summer full of ups and downs. i wish i could hug you all. because sometimes that's all i really need. xoxoxo thanks again for your support guys.

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  9. Oh sweetheart. I'm just now catching up on all of this and you and Ozzie are in my heart always. He will do great things, lady, I am sure of it. Great, amazing things and it will because he has such a great, amazing mother who always believed he would.

    xoxo

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