Yesterday was our first trip to the Occupational and Physical Therapy department at Children's Mercy. Grandma Ellen went with us. Judy is our new PT and Wendy is our new OT. We'll be seeing them once a month to evaluate Toby's progress and make sure he is getting every opportunity available to him. This is what I've been waiting for since our first visit to Children's Mercy.
Toby has been in early intervention therapy since he was 6 months old. I have no complaints about either of his therapists through this program and we will continue to see them. Dr. Facchini, Toby's neurologist, suggested that we also see the PT/OT department at Children's to make sure Toby stays on an aggressive path of therapy.
Judy offered up suggestions that I hadn't heard before and encouraged me to get Toby to start putting more weight on his legs. This will encourage proper bone development and when he is ready to walk his muscles will be too. We also got two new splints called "pedi-wraps" to go over his knees while he is practicing standing.
She also folded him up like a frog so he would bear weight on his arms. He was giggling the whole time, especially when she started bouncing his butt up and down.
He was definitely done with therapy by the time it was the OT's turn. Wendy observed him a little bit and suggested some mild constraint therapy in his high chair. She said to choose the messiest thing we can think of (pudding, whipped cream, etc) to encourage him to explore it with his right hand.
People may think that I'm crazy for driving up to Kansas City once a month just to supplement therapy he is already getting at home. I even sensed that from one of the therapists. But if it means that Toby will form a new neural pathway or learn a new skill that he might not have if we just stayed in Springfield, then call me crazy. I don't really care.
Our next appointment is December 8th and I hope that we will have some exciting things to share with the therapist!
Originally written 11/8/11
Saturday, November 19, 2011
Monday, October 24, 2011
Eating an Elephant
"In-utero stroke...hemiparesis of the right side of the body...cerebral palsy...brain damage....MRI..."
The discussion was a blur but these were definite terms that stood out during Toby's first trip to the neurologist. And they were scary. In fact, they still are. Shocking, in fact. We knew for a long time that something was 'wrong' with Toby. As he grew and learned to play, he wasn't using his right hand - it's like it didn't exist to him. At 6 months, he wasn't sitting unsupported. He seemed to be just fine cognitively and socially but physically? He needed help.
After that first appointment, the questions started. And they were all over the place.
Did I do something to cause the stroke? How much of his brain is affected? Is he going to need a wheelchair? Will it affect his learning? Will he go to a regular school? Will he be able to go to college? What did I do wrong? Am I going to be able to handle this?
Suddenly, I became obsessed with something I knew very little about. I started googling into all hours of the night and I ended up a complete wreck. I don't know why people do this to themselves when faced with medical issues. I guess it's our desperation to know something immediately - to soothe some of the worry. In hindsight, I had no idea what I was doing. I'm a librarian and my love of information is also my downfall.
After that, things began to get easier.
I started researching
.
Not just googling - the real deal. I learned that "cerebral palsy" is an umbrella term for all kinds of neurological issues and abilities and Toby's abilities can differ greatly from other kids along the spectrum. Kids with hemiplegic cerebral palsy typically aren't wheelchair bound. They generally have normal intelligence. And with enough physical therapy, they go on to live pretty 'normal' lives - whatever that means anyways.
I started looking for support.
There is a Facebook group called Hemikids and Pediatric Stroke Survivors. I never dreamed I would find so much love and support there but every day it has something to offer. There is a branch of that group specifically for kids in Toby's age range as well. There are all kinds of people out there going through just the same thing.
I learned there is hope.
I learned that "cerebral palsy" is an umbrella term for all kinds of neurological issues and abilities and Toby's abilities can differ greatly from other kids along the spectrum. His symptoms seem to be minimal and for that I am so incredibly thankful. Kids with hemiplegic cerebral palsy typically aren't wheelchair bound. They generally have normal intelligence. And with enough physical therapy, they go on to live pretty 'normal' lives - whatever that means anyways. Toby will always have his struggles but there is a silver lining.
So now we start our new adventure. More trips to Kansas City, more aggressive physical therapy, and more questions. But every little glimpse of progress and every sweet little boy smile are what keeps us going through all of it.
Like my mom always says, "How do you eat an elephant? One bite at a time."
The discussion was a blur but these were definite terms that stood out during Toby's first trip to the neurologist. And they were scary. In fact, they still are. Shocking, in fact. We knew for a long time that something was 'wrong' with Toby. As he grew and learned to play, he wasn't using his right hand - it's like it didn't exist to him. At 6 months, he wasn't sitting unsupported. He seemed to be just fine cognitively and socially but physically? He needed help.
After that first appointment, the questions started. And they were all over the place.
Did I do something to cause the stroke? How much of his brain is affected? Is he going to need a wheelchair? Will it affect his learning? Will he go to a regular school? Will he be able to go to college? What did I do wrong? Am I going to be able to handle this?
Suddenly, I became obsessed with something I knew very little about. I started googling into all hours of the night and I ended up a complete wreck. I don't know why people do this to themselves when faced with medical issues. I guess it's our desperation to know something immediately - to soothe some of the worry. In hindsight, I had no idea what I was doing. I'm a librarian and my love of information is also my downfall.
"BREATHE" I finally told myself, "Just stop and breathe for a minute!"
After that, things began to get easier.
I started researching
.
Not just googling - the real deal. I learned that "cerebral palsy" is an umbrella term for all kinds of neurological issues and abilities and Toby's abilities can differ greatly from other kids along the spectrum. Kids with hemiplegic cerebral palsy typically aren't wheelchair bound. They generally have normal intelligence. And with enough physical therapy, they go on to live pretty 'normal' lives - whatever that means anyways.
I started looking for support.
There is a Facebook group called Hemikids and Pediatric Stroke Survivors. I never dreamed I would find so much love and support there but every day it has something to offer. There is a branch of that group specifically for kids in Toby's age range as well. There are all kinds of people out there going through just the same thing.
I learned there is hope.
I learned that "cerebral palsy" is an umbrella term for all kinds of neurological issues and abilities and Toby's abilities can differ greatly from other kids along the spectrum. His symptoms seem to be minimal and for that I am so incredibly thankful. Kids with hemiplegic cerebral palsy typically aren't wheelchair bound. They generally have normal intelligence. And with enough physical therapy, they go on to live pretty 'normal' lives - whatever that means anyways. Toby will always have his struggles but there is a silver lining.
So now we start our new adventure. More trips to Kansas City, more aggressive physical therapy, and more questions. But every little glimpse of progress and every sweet little boy smile are what keeps us going through all of it.
Like my mom always says, "How do you eat an elephant? One bite at a time."
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