Friday, March 30, 2012

Flashback Friday: 5 days late


I missed it, after waiting all month for Cerebral Palsy Awareness DAY this  month on the 25th. Since I missed it, I'm still going to share this video from last year:
...full of information and statistics regarding the need for increased government funding and research for Cerebral Palsy: (click stop on my music player above so you can hear the music)



Remember that CP affects most individuals with neurological conditions in some variation or another... even without a formal diagnosis, and in a broad spectrum of ways. 


Here is a fact sheet from the United Cerebral Palsy (UCP), be sure to visit their WEBSITE for more information: 

Cerebral Palsy is: 
• A number of disorders of the developing brain affecting body movement, posture and muscle coordination. 
• Caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during or shortly after birth; during infancy; or during early 
childhood. 
• Not a disease, not progressive, nor communicable. 

U.S. Statistics: 
• It is estimated that 764,000 children and adults in the U.S. manifest one or more of the symptoms of cerebral palsy. 
• According to the Centers for Disease Control and Prevention (CDC), each year about 10,000 babies born in the United States will develop cerebral palsy
• 1,200 - 1,500 preschool age children are also recognized to have cerebral palsy each year. 
• A 2009 CDC study found that the average prevalence of CP in 2004 was 3.3 per 1,000. 

The prevalence was significantly higher in boys than in girls overall (male/female ratio, 1.4:1)

Types of Cerebral Palsy: 
• Spastic Cerebral Palsy: characterized by muscle stiffness and permanent contractions 
• Athetoid or Dyskinetic Cerebral Palsy: characterized by uncontrolled, slow, writhing movements 
• Ataxic Cerebral Palsy: characterized by poor coordination and balance 

Is Cerebral Palsy Curable? 
At this time, there is no cure for the developmental brain damage that causes cerebral palsy. 

Training and therapy, however, can help improve muscle function and coordination. Studies have found that children who receive early intervention services such as physical and 
occupational therapy and other support services are more likely to lead a more typical and improved quality of life. 

Parents, families, professionals and caregivers of children ages zero to five, newly diagnosed with a disability or developmental delay, can visit My Child Without 
Limits (www.MyChildWithoutLimits.org) for an online resource and community.  
                                                 
Although there is no cure, recent advancements in neurological studies have vastly expanded knowledge of brain development and allow researchers to explore new treatments focused on the protection and care of children with cerebral palsy and other developmental brain disorders that occur early in life.  

Life Expectancy:  
Past medical studies on cerebral palsy do not indicate any life expectancy trends, but research strongly suggests that life expectancy is correlated to severity of disabilities. Patients who have severe forms of cerebral palsy – particularly lack of mobility, lack of availability to feed oneself, or severe respiratory impairment –  are expected to have a shortened lifespan, while those who are fully ambulatory and capable of self-feeding have normal life expectancies.  

Risk Factors: 
• premature birth 
• low birth weight 
• inability of the placenta to provide the developing fetus with oxygen and nutrients 
• bacterial infection of the mother, fetus or infant that directly or indirectly attack the infant’s central nervous system 
• lack of growth factors during intra-uterine life 
• prolonged loss of oxygen during the birthing process 
• RH blood type incompatibility between mother and infant 
• severe jaundice shortly after birth 
• infection of the mother with German measles or other viral diseases in early pregnancy 

Effects: 
A person with cerebral palsy may exhibit one or more of the following effects: 
• muscle tightness or spasticity 
• disturbance in gait or mobility 
• involuntary movement 
• difficulty in swallowing and problems with speech 

A person with cerebral palsy may also 
exhibit: 
• difficulty in feeding 
• impairment of sight, hearing or speech 
• abnormal sensation and perception 
• seizures 
• difficulty with bladder and bowel control 
• intellectual disability 
• learning disabilities 
• problems with breathing due to postural difficulties 
• skin disorders due to pressure sores

Online Informational Resources: 
• American Association for Cerebral Palsy and 
Developmental Medicine (AACPDM) 
• Centers for Disease Control & Prevention (CDC) 
• Cerebral Palsy International Research Foundation 
• Life Expectancy 
• My Child Without Limits:   
• National Center for Health Statistics 
• National Institute of Neurological Disorders and Stroke (National Institutes of Health) 
• United Cerebral Palsy (UCP) 


Wednesday, March 28, 2012

Almost Wordless Wednesday: Bee Aware

New awareness merchandise available on our website: http://www.hydranencephalyfoundation.org/merchandise.html

Tuesday, March 27, 2012

Toy-FULL Tuesday


 


The wonderful light box, basically exactly what it sounds like: a box, with a light in it, that is used for vision therapies and general play at our house... since Brayden's older sisters like it too! Since it is a therapy tool, with the label of "special  needs" on it, it carries a hefty price tag as well. We were fortunate enough to have one given to us that was old and out of use in a local school district. It works great for us here at home... our great friend Heidi, Junior's mom, actually made one and you can see more about that at her Adaptions 4 Kidz blog (be sure to browse around for some other pretty incredible adaptions for your little ones as well... especially crafty ideas!) Here is Junior's light box and the blog post has many more pics as well!


 


Here are some ideas for utilizing your light box, once you've managed to get your hands on one or created one yourself...


Mini Light Box:Fred's Head (APH)
 


50 WAYS TO USE A LIGHT BOX 
By Michelle Clyne, M.S. Ed.
Project Coordinator
Project Reach: Illinois Deaf-Blind Services



Use a Light Box as a Table for Eating:
• Pour juice in a clear cup or bottle which will glow and encourage reaching 
• Scatter M&M’s on the surface 
• Scatter Cheerios on the surface 
• Scatter small or large crackers on the surface 
• Set a table by having the student match plate, cup and spoon with a transparent outline of these objects on the light box 
• Set a plate with bread and put a container of light colored jelly on a light box (suggest apricot), help the student shift gaze from jelly jar to bread as he or you take the jelly to 
spread on the bread 
• Place Jello in clear container (it will glow) 
• Help the student mix colored soft drink mix into a clear glass of water and watch the color develop


Only $29 from The Find!


Use a Light Box for Arts & Crafts (cover in clear plastic): 
• Finger paint on parchment paper with foam paint 
• Paint with dark colored pudding 
• Paint with whipped topping on red or blue transparency 
• Use watercolors on parchment paper 
• Sprinkle powdered tempera paint on parchment paper; help student spray on water and watch color spread and swirl 
• Roll clay into strings and lay out in interesting shapes on light box 
• Use Wikki Sticks to make raised outlines 
• Use “smelly” markers on tissue paper 
• Make a necklace using beads and string



Use a Light Box to Encourage Reaching: 
• Place APH spinner on light box which will motivate student to reach to start and stop spinner 
• Attach on end of a Slinky to the handle and hang over lighted surface; wrap other end onto student’s wrist to encourage arm movement 
• Stack up blocks so that simple arm or leg movement knocks them down 
• Leave a Koosh ball on the light box 
• On large light box, put a capability switch attached to an adapted plush toy. Position the student so that slight pressure on the switch makes the plush toy move. Help the student 
shift gaze between the switch, the toy and the light box. 


Use a Light Box with Students who have Movement difficulties: 
• Adult helps student with any of the activities suggested here if the student signals for the adult to continue 
• Have student use a capability switch to turn on the light box 
• Small infants can be positioned prone on the light box for tummy time 
• In supported 90 degree sitting, a small child can crinkle mylar paper under their foot or feet while they rest on a light box 
• Have the student eye point to choose one of two items lined up on a light box 


Use a Light Box during Class: 
• Make transparencies of circle/calendar time pictures and show them on the light box 
• Make transparent digital pictures of classmates and familiar adults, show them using the light box, asking the student to identify “so and so” 
• Have the student construct a daily schedule on the light box using pictures made into transparencies 
• Count manipulatives lined up on a light box 
• Use a bold marker to write letters on lightweight paper and tape it to the light box. Have student trace the letters. 
• “Sense of Science” (APH) overlays can encourage gaze shift, recognition, etc. 
• Do sorting activities on the light box 
• Have the student choose rhythm instruments by the outline they make on the light box 
• Use the light box to highlight dark lines that need to be cut for scissor projects



Use the Light Box for Daily Living Routines:
• When getting dressed, put the sock and shoe on the light box and have the child eye point to the next item needed 
• Put wash cloth and tooth brush on the light box and ask the child to choose which they want to do first. Choose with eye pointing, finger pointing, naming…
• Before going to the store, doctor, etc., show the child transparencies of those activities on the light box 


Use the Light Box for Make Believe Play:
• Put dress up items on light box. Have child identify items and choose how they want to dress up: e.g. baseball cap vs. construction hat 
• Put play hammer or similar object next to play area so that the child can choose to play house or play construction 
• Trace outlines of make believe characters/action figures to make pictures of them, then use picture to write a story 
• Tell stories with pictures by using real objects on light box to create a “shadow puppet” type of performance. E.g. twigs make trees and a Barbie type doll becomes Goldilocks 


Others Ways to Use a Light Box:
• Look at a “Discovery Light Book” on the light box 
• Play “Break the Ice” on a large light box 
• Play hands only “Twister” with a transparent color circle overlay on a large light box 
• Play table top hockey using quarters and fingers on large light box 
• Make a woven pot holder putting the loom and loops on a light box 
• Thumb wrestle with a friend on the light box 
• ASK THE CHILD WHAT THEY WANT TO DO 


Enabling Devices ■ 50 Broadway Hawthorne NY 10532 ■ 800-832-8697
www.enablingdevices.com

THIS is awesome!! From GUS Modern 
 




Here are some more pretty great ideas which I stumbled upon on the web site for American Printing House for the Blind, Inc:




  • Reflective tissue boxes with a different color Mylar® sheet stuffed inside
  • Foil metallic or Mylar® pompoms or party blowers Mylar® cat balls
  • Wide silver mixing bowl with rubber ball - swirl the ball inside the bowl creating a reflective motion
  • Food dye and hair gel in a double zip lock plastic bag placed on a light table or light box
  • Roll cat bell toys on light table or light box
  • Plastic needlepoint screens on a light table or light box
  • Mesh place mats and coasters on a light table or light box
  • Bathroom appliqu├ęs on a light table or light box
  • Roll a plastic egg on a light table or light box. When applicable, place something inside the egg for noise
  • Arm band bicycle light attached to bottle
  • Identifier disks - attachable by band or adjustable slit for helping to identify items such as spoon, toothbrush, etc. Disks may be reflective to start.
  • White box with silver CDs strategically placed on it so the child can see him/herself- can also double as a lap desk
  • Dog toy-rolling, flashing light bone CAUTION FOR SEIZURES
  • Rope Lights
  • Iridescent light chaser
  • Lead light wand
  • Silver dryer duct tube
  • Artificial or real flowers, e.g., sunflowers, daisies, orchids, etc.
  • Multi-sensory object(s) with individual controls for sensory stimulators
  • Solid color or two color ball with sound
  • Wind-up penguin, first flaps wings and then walks
  • Cat toy-plastic rat that moves upon being lightly tapped-rat says "na na na na na," available from cat catalogs and discount stores
  • Lift-off spinning toy-stays in the air for a while
  • Neon tubing strung with cat bell toys
  • Bubble blowers
  • Spinning top that changes light color as it spins
  • Vibrating pen made of translucent colored plastic
  • Slow moving wind-up toys
  • Florescent bingo daubers
  • Giant florescent puff balls
  • Florescent foam sun visor
  • Three plastic plates (2 one color-1 another color-use child's favorite color or florescent) on a contrasting color tablecloth
  • Bright, one color Slinky® (on light table in the beginning, then without light)
  • Sheet over mom and baby with red light
  • White noise machines w/tapes and/or headphones
  • Books and materials with simple faces
  • Photo book equipped with recording device, available at Radio Shack
  • Books with emphasis on internal details-same character in different poses but with a certain distinguishing characteristics such as a hair bow or baseball cap
  • Books that are age appropriate
  • Books about body language
  • Books that build from one item pictures with add-ons as you go
  • Book with tactile clues that fade out as book progresses
  • Round vinyl tablecloths in yellow, red, or black to provide an uncluttered background creating visual contrast
  • Black tri-fold display board to provide an uncluttered background creating visual contrast
  • Floam - good for some tactually defensive children
  • Toys featuring soft noises for preemies
  • Various color combinations can be achieved with the Lauri® Fit-a-Shape Puzzles, starting with one color and building to four colors. One side is textured and the other side is smooth.



Prism Blocks by Alex® work especially well when dimming the light box a bit. I usually offer several of the same color and then add one of a different color and watch to see if the child reaches for or looks at the 'different' one. It usually works best at a light table where I am able to position the child in an upright supported position with arms on the table, it seems to get that head upright for the four children I have worked with using these. I have also used them on the small light box with a child in side-lying position with good response. —Terri Connolly, Visually Impaired Preschool Services, Louisville, KY


Many metallic, neon, and brightly colored items can be purchased commercially. Most mail order or online companies require a "unit" purchase in assorted colors. A unit can be any amount from ½ dozen to six dozen. Getting six or twelve different colors of pom poms, glitter plastic twist spinners, or glass mirror ball ornaments may be a great way to check for color preferences. 


 


Check out the following link and type in search words such as "glitter" or "metallic" and see what you can find: www.orientaltrading.com Any dollar store is a treasure trove of great ideas as well!!


If you're on Facebook, find our friends at Thinking Outside the Lightbox for more great ideas to aid with vision therapy... and, of course, be sure to like our foundation page for Global Hydranencephaly Foundation.





Friday, March 23, 2012

Flashback Friday



A Moment of Typical
By Ali Harper, Small Portion of a Life's Journey
March 24, 2010


My own son, living with hydranencephaly... missing most or even all of his cerebral cortex... displayed a very public (not to mention LOUD) moment of "typical". While grocery shopping, he became a bit fussy... normal after our morning physical therapy session, but this day he took it to a whole new level. This came after overhearing a woman and her daughter in the waiting room at therapy discussing a boy who defied medical odds and was now living a relatively "normal" life as an adult... they seemed in awe to this fact, even as their own daughter/sister were there for therapy for some level of developmental delays as an older teen or young adult. They chalked the incredible feat of the man they were reading about in the article as a misdiagnosis, when in fact it was likely nothing shy of a medical miracle. I wish everyone acknowledged small miracles when they witness them... just as I have come to...


Back to Brayden and his "moment of typical". While in the check-out line, he proceeded to throw a fit like I have never seen before. Mind you, I have two older girls whom are both healthy, "typical" children... yet I have still personally never experienced a fit like this from one of my children. Sure, everyone has seen that kid at the store that makes you thankful you're not their parent... kicking and screaming while their parent looks unbelievably embarrassed to be their parent in that moment. I've never been that parent... and even after this fit, I'm still not that parent!!


Not only was he screaming at the top of his lungs, but he was kicking his legs until both of this shoes flew off. When I tried to console him, he would yank his arms away from me and pull his body away too... he didn't want to be consoled, he wanted to throw a fit. And, throw a fit he did!! As I mentioned, I wasn't embarrassed... not even a little bit. Odd, right... I'll get back to that in a moment.


The cashier, and two other smiling lady employees attempted to also console him.... strangers with smiles weren't working for him either. Another mother in line behind us, also leaned over to talk to him about how adorable he was in his glasses. Instead of this calming him at all, he screamed louder... I even began to worry that something was hurting him! But, just as quickly as the fit began, it stopped the second we walked through the door and outside of the grocery store.


About that mention of not being embarrassed... I found myself instead incredibly proud that my son was actually able to throw such an obvious fit as he did. I feel the same when he does the opposite of what we want him to do in obvious rebellion during therapies... or when he acts like he can't do something when we want him to, although everyone knows he can do it!! He possesses his own defiant personality, his own streak of stubbornness... characteristics many parents would find frustrating or less than positive. I, however, LOVE it in him...


I've also blogged here before about how I feel when strangers ask about Brayden. Now it is even more so worrisome since he is nearing two and it is becoming increasingly more obvious that he is developmentally delayed. I'm never really sure what to say to questions asked, but I generally answer honestly and have fortunately found that I appreciate the questions... it's the stares and the whispers that still trip a trigger with me. Brayden has a way of charming everyone who sees him... he definitely gets all the attention everywhere we go... and I just hope that he gleams of hope to them as he does to me.


After my experience yesterday, the following story really got me this morning. I'm always curious if people think again of Brayden after they've met and learned more about him, if he has blessed them with an enlightening moment or assured their curiousness as to the existence of miracles... or better yet, renewed their own sense of hope for a tragic obstacle they may be facing. It's funny how each time there is something weighing heavy on my heart, that I myself encounter another's touching words that seem to ease my own mind. Enjoy:




Unexpected Blessing

Written By:
Julie J. Hunter

His name was Aaron, and I will never forget him. I was 16 years old and trying to hold down two jobs and finish my high school education. I babysat after school and on the weekends. My new job was an unbelievable opportunity. I was going to be the Easter Bunny at my local mall. Yes, you just read the words; I was the Easter Bunny. This opportunity was one of the most interesting jobs that I have ever had in my life. I mean, think about it I was being paid to "bounce"around the mall in a 7-foot fur covered rabbit suit, bringing smiles and giggles to children and adults of every age. Little did I realize that this job, this moment in my youth, would be one of the most rewarding of my life.

At first glance, the suit seemed bigger than life. It was everything you imagined the Easter Bunny would look like in the mind of a child. The suit was soft and smooth to the touch. The animated eyes and inviting smile tinted upon the rabbit's face were visions of my childhood past. The large blue eyes danced with a childlike mischief, and the smile; the smile opened the door to the majesty of colorful bespeckeled eggs hidden in tall wheat grass and decadent milk chocolate bunnies placed gently in the chubby hand of a cherubic three-year old tasting the sweet milk of childhood for the first time. The giggles that emanated from passerby both young and old made me laugh aloud. It was a chance to escape the harsh reality of the world in which I lived. In that moment in time, all was magical, sweet, and innocent. Fun, fun is what I remember feeling, and gratefulness.
It was my third day "in the suit". I was the lone female rabbit and shared this coveted duty with Ron. We worked opposite shifts and the mall employees learned to distinguish us by my perfume. I hope that I smelled better than Ron did. One afternoon, I was sitting on my very distinguished looking throne taking a water break when I saw a woman approaching me very timidly. The photographer working with me asked the woman if we could help her and if she was here to see the Easter Bunny. The woman quietly asked to speak only to with the person working inside the bunny suit. My photographer asked me if I would speak with the woman and I said of course.
She walked up to me in halting steps and her eyes were brimming over with tears. I remember being taken aback because I could not see what had upset her so. She leaned in to me and asked in a still soft voice if I minded if she brought her son over to have his picture taken with me. I of course answered, "Sure. No problem." However, she just stood there staring at me through the small holes that had been veiled to allow me to see my surroundings better. Large giant tears spilled over onto her cheeks and she thanked me profoundly. Still confused I told her that I did not understand why she asked my permission to have a picture taken. I mean, after all, that is what I was hired to do. Then I saw him. Aaron, blonde headed, beautiful blue eyed Aaron.
Until the birth of my youngest son, I had never seen clearer and more beautiful blue eyes. They were comparable to a full moon spilling its loveliness onto a clear lake of peace and serenity. Aaron was not what society would call your "average" little boy. Aaron, all three years of him, sat propped upright in his wheelchair. This wheelchair was his lifeblood when he was away from his home. Its functions were varied and multifaceted. Not only did it seat his frail slight body, but it also carried the ventilator and the suction machine that Aaron needed to stay alive if he traveled outside the safe cocoon of his home.
I sat there, quietly mesmerized by the beauty of this little boy. His mother rolled him up to me and I placed my fur-covered hand on top of his. With his fragile left hand, he reached for my paw and patted it ever so gently. I sat there and silently sobbed, cloaked in the sanctity of my costume. Giant tears of gratefulness washed down my cheeks. I was blessed to be the one chosen to be in the suit that day. I was the one that Aaron would change forever. I then realized that if it was at all possible, I would hold this child upon my lap and hopefully give him and his mother a memory that would last them all the days of their lives; the memory of Aaron being proudly held by the Easter Bunny.
And so, it was with great care to be as gentle as possible that this beautiful mother lifted this blessed angel from the shackles of what he had come to know as his normal, his wheelchair, and sat him sweetly upon my lap. The tubes were strategically hidden and on that day, memories were solidified forever on a piece of paper that would transform itself into a form of gold to Aaron's mother. This was after all his first picture with the Easter Bunny.
Once the picture taking was finished Aaron's mother reached for him to place Aaron back into his wheelchair. I held up my hand to halt her progress. I just wanted to hold him and wish away all of his pain and his fears. Aaron had this beautiful head of light blonde hair. It glistened in the glow of his surroundings. It seemed to bathe him in a gleaming light of innocence and protection. In reality, it could have been a halo. I do indeed believe that I was in the presence of one of God's precious angels. 

As I held him, I sobbed for him and for all the tomorrows, I thought he would miss. I cried for his life that in moments was overwhelmed and held captive by pain and the unknown reality of his tomorrows. I cried for myself, for Aaron touched me so deeply that his face is forever burned upon my memory.
Aaron, my beautiful little guardian angel, peace be with you and thank you for blessing my life. My prayer for you has always been that your tomorrows are full of merriment and vibrant dreams that become your actuality. Thank you for changing my life and making me more aware, more patient, kinder and more grateful for everything that God has blessed me with; may love and kindness follow you all the days of your life. My love goes out to you, wherever you are Aaron. Please know that you made this world a better place to live in.

So now, instead of wondering what people think of my son after an encounter and discussion... I hope they think of him often and remember that there is hope in this world and there is never a reason to not believe in miracles. Even if an obstacle leads to tragedy in the end, ultimately that tragedy has created some good...

Thursday, March 22, 2012

Thankful Thursday: Bee-Worthy Share


hope believe dream 


Losing Dreams, Finding Hope
by Lilly Lane - Kids without Diagnosis 
Saturday, 17 March 2012 at 23:06 


From the moment you feel those little bubbly tummy wiggles
And feel the life inside you grow
You dream of what will be
You dream of baby giggles,
smiles, and laughter

As a mother to be, these are things you just know

And when you see those eyes for the first time
And you fall in love
There is nothing in the world at that moment
that can break that dream

Until you realize there is no cry
And you don't know why
She seems happy to just lay there
and not feed
She moves, but in a strange way
Her head is shaped funny, you don't care you tell yourself

I am her mummy
And I love her whatever

As time goes on it seems ok
You tell yourself it's not that bad
Those dreams still remain
Until there is no first smile
No first roll
No first word
No first step

The bleachy smell of the hospital walls and floors become your second home
As the medical world scratch their heads
And tell you they really don't know

You know, inside deep inside
Those dreams have shattered and been stolen away
In the end it doesn't matter what they say
You realize you have lost your baby in a way

Not in breath but in dreams of the future
Dreams of forever
Dreams that will be never

As you spiral down in to the unknown
An internal battle rages on
Information overload

Do I grieve or do I cowl
Do I dare to dream again?

The answer is yes but not as before
Dream with the hope that you find in your love and in her soul
Between your heart and your head there will always be war

But as long as there is hope, new dreams can be formed
There is hope in her eyes, and dreams of making you happy
Of feeling your love, and seeing you smile
She doesn't understand why you cry
Or why you constantly ask why

So hold her close when you feel that burst
Of hopelessness outside you lurch
And dream of the day that you will be happy
To accept the new dreams and hope that she shows you
In her eyes and in her unconditional love


Written by C.J Lane Founder of Lilly Lane - Kids without Diagnosis on Facebook.


**I wrote this for myself and for my daughter Lilly, this is the journey which I am now travelling and wanted to share it with others in the hope that they dont feel so alone. I am still facing a daily battle between lost dreams and finding hope, but when I look at her big wide beautiful eyes I see she needs me to be at peace so I can love her in her entirety.

Wednesday, March 21, 2012

Busy Bees

 

We have been a bunch of busy, busy bees... so, my apologies in the lack of posts recently. Stay tuned for regular posts beginning again tomorrow & remember that we welcome ANY and ALL submissions from the families of our little bees (those little loves with a diagnosis of hydranencephaly). 

"The bee is more honored than other animals, not because she labors, but because she labors for others."

~ Saint John Chrysostom


Thursday, March 15, 2012

Flashback Friday: CP Awareness Month Continues...


Flashing back & bringing further mention to the fact that March is all about:
 
What is CP?
by Ali Harper, Small Portion of a Life's Journey, March 2011




...or more importantly, what is it NOT? 


CP, which is short for cerebral palsy, is a term not always officially diagnosed with neurological conditions however almost always a part of those conditions. Since cerebral means having to do with the brain, and palsy means the weakness of or inability to efficiently use muscles... that makes it a sure tie-in to most any brain associated condition. There are a great many types and varying degrees of CP, depending upon the extent of and area of which the damage to the brain has occurred. 


Now that I've given a rundown, let me share with you an amazing article from a Twitter/Blogger-friend, Erin, living with CP. She's amazing, not only in the respect that she is an adult living with CP, but in the fact that she is also a pre-med student. I told you, pretty amazing :) and here's her article:

Cerebral Palsy: What It Isn’t
JULY 25, 2010
by Erin

All too often, as a college and pre-medical student with cerebral palsy, I’m asked what cerebral palsy is, but no one ever seems too concerned with what it isn’t, and to me, that’s the most important part.

Too many assumptions and stereotypes plague the world of chronic health than do the positives, the abilities of patients, and the strength of their families.

I’ll do you a favor. Let’s explore a few things that cerebral palsy isn’t, and I think that by doing that, you’ll find that you’ll know exactly what the diagnosis means!


Cerebral palsy isn’t a sickness
I’m not contagious, and neither is anyone else who has the diagnosis. Nor am I (some with cerebral palsy have underlying conditions that do cause this) chronically sick. I have a pretty weak immune system, but I think getting through my entire first year and a month of college without dorm-induced illness is a feat for anyone. Especially me, who spent half of her pre-kindergarten year at home with the flu. But yes, this means that you can approach me or anyone else with cerebral palsy to say hello. Though some may not be able to answer you with their mouths, let me just say that technology is an amazing feat of the modern day, and you may be surprised at the response you receive! Though I may be in pain on some days, the pain is usually induced by the pressure on my knees that is caused from walking with a “crooked” gait for fifteen years as of November 5, 2010. Thankfully, after an NSAID, I’m usually okay, and there’s no sickness involved!

Cerebral palsy isn’t synonymous for stupid
All too often it is assumed that because a person’s executive functions are impaired, it must mean that they are “stupid”, and honestly, this is the most far off assumption I’ve ever heard. Many times, though an individual may not have the ability to have a conversation with you doesn’t mean that he or she doesn’t understand what you’re saying. This brings me to another point. Avoid using the “parentese” tone with anyone with a disability. “Parentese.”(Think: A mother encouraging her 15 month old child to walk. Yep,that voice. From my side of the table, just because “I walk funny” doesn’t mean I can’t balance a chemical equation or solve a complex calculus problem. There’s been some serious re-wiring, otherwise known as plasticity, that has occurred in that trusty ol’ brain of mine. I can run like Forrest, and thank goodness I’ve got legs. Because Lieutenant Dan sure doesn’t have any!

Cerebral palsy doesn’t mean that someone can’t be an independent thinker. 
For some of us, thinking is our only independent escape. Fortunately, I was able to move to school and gain that element of independence; however, I’m not driving. There are often people in our lives who have been caring for us our entire lives, and they think they know best. The truth of the matter is that parents are simply a voice. Discouraging independent thought is a sign of disrespect to all, but imagine. if thinking was the only way you could express yourself, how would you feel if someone intentionally robbed you of the ability?

Cerebral palsy doesn’t mean that someone can’t have a productive, healthy social life. 
As for me, I love going out with my friends to enjoy a nice dinner, a cup of coffee, some ice cream, or whatnot. Surely, it will take me longer to walk to a restaurant near our school, but does that mean that my social life is limited? Most definitely not. The same is true for many people with varying degrees of severity of the diagnosis. Just because you think a wheelchair or other piece of equipment is complicated doesn’t mean that the person using the equipment can’t enjoy socialization. In fact, the equipment that they use is often the one thing that enables them to have the ability to socialize. Think of wheels as figurative feet. In my situation, most of the time, one of the reasons that I may not be available to socialize is due to fatigue. Fatigue in a 20 year old? Yes, it’s very much a part of my life that I would give up in a heartbeat, but when you expend the same amount of energy at 9am as the average person does by 9pm, it makes it difficult to justify not getting adequate rest. If you’re worried that someone might be fatigued and feel guilty for asking them to tag along for dinner or coffee or the like, just ask. Typically, with the many things that cerebral palsy requires of us lucky ones, we’ve mustered up the whole “saying no is okay” thing.

Cerebral palsy doesn’t mean we should be treated any differently
Whether you’re in school, in the workplace, at home, or in public in general, we all have a reason to be where we are. In the case of the workforce, all people applied, interviewed, and have the qualities necessary for the job. The same goes for school. Regardless of the challenges we face, we’re all qualified to be in our own place, in our own stage at any given time. Equality, as with honesty, is always the best policy.

The bottom line is that people, regardless of their diagnosis, challenges, or whatever else life has thrown their way, are just that. They’re people, which means that they have emotion, that they have a voice, and that they have an opinion. It’s an absolute honor to have challenges, and I wouldn’t trade mine for the world.

That being said, the same goes for any diagnosis...hydranencephaly included. If I was told to pick the one concept I have learned by being a part of the "special needs community" it would be this: do not categorize everyone based upon the diagnosis and assumptions surrounding the diagnosis. 

Disagree? Brayden, as well as many others, is living with a condition deemed "incompatible with life"... he's missing a large majority of his brain! Most of the population, who don't know a child living with hydran, would assume that life is completely impossible without any portion of your brain. If you are part of that population, read about Brayden on his journey at his CaringBridge page. (better yet, search for some pretty amazing stories in our bee-ography series here on the blog)

So, if it's a condition... is it curable? 

Not exactly, but it can be maintained and improved upon. Here's another article from Erin, and her perspective on the idea of a cure for CP:

Cure?
AUGUST 10, 2010
by Erin

The most common question, aside from meriting an explanation of the diagnosis, that I receive is, “If you could change it, would you?” The answer is absolutely not. Do you think there should be a cure? Absolutely not.

My challenges have made me who I am. Every day, I learn a more efficient way of executing a task that may be mundane for some of you. Just today, I figured out that I could plug both my iPad and MacBook into the same outlet of the extension cord to make it easier to access! That’s no big deal to you, I know. To me, everything is a milestone, and the little things mean more than I could ever adequately describe. As a doctor, I’ll have a relational aspect with my patients that is fairly uncommon, and for that, I’m truly grateful. As a pediatrician, parents need a source of comfort that is not often easy for doctors to provide in the exam room. I couldn’t be more excited to share my knowledge and experiences with the ones who need it most.

Life is meant to be lived. If you continually think about the things you are unable to do and focused on the “why” of life, you can’t enjoy it and relish in what it might have to offer. In my opinion, a “cure” would be the “red dye” to the naturalistic qualities of life. To take such a crucial aspect of a person is selfish, to take his uniqueness is contributing to his self-deprecation, and why change something that is meant to be? The fact that you might be in pain at times is unfortunate, but just think. There are people who would do most anything for a plate of food. Blessings define the condition I have.

Science says it would be tough. Cerebral palsy isn’t genetic. It’s a congenital brain injury sustained before, during, or just after birth, so while a cure is virtually unpredictable, prevention may be possible. Pre-natal diagnostics are difficult as well, simply due to the fact that we’ve not yet determine if there are “triggers” to cause the brain injury such as certain habits that the mother may adopt during pregnancy or the size of the baby or anything like that. Most all babies with cerebral palsy or similar brain injuries and birth complications are premature. So, where do we start?

Kids are still kids; people are still people. Though many people with cerebral palsy have learning difficulties, speech difficulties, mobility impairments, and the like, they are still people. They still deserve the chance to learn, to grow, to live, to laugh, and to love and be loved.

If you’re a parent with a child with cerebral palsy or other special need, you’re probably thinking, “If my child were cured, life would be so much easier.” While that may be true, I can assure you that your child wouldn’t be who he or she is today without it, and it has shaped his or her self confidence, self image, and self esteem more than is describable. You will have your hard days as a parent, but everyone will! Find joy in the fact that your child, just as any other, is a miracle. He’s a miracle of life, he’s a miracle of spirit, and he’s a miracle of heart. One day, he’ll grow up to be someone’s greatest mentor or teacher, often without saying a word.

If you’re a medical professional who treats individuals with cerebral palsy or other special needs, you may say that if children didn’t have these diagnoses, your job would be so much easier. It’s true. It would, but would you learn as much? Would you have the opportunity to look into the eyes of a child to say that they’ll be okay, that they have a chance at life, or that they’re a beacon of light and courage. Are they the reason that you do what you do?

Though there are some negatives associated with the diagnosis of cerebral palsy, I wouldn’t trade it for all the world. Would you?


Thanks so much, Erin, for your enlightenment & reminder to embrace the life that is given to you...

Thoughtful Thursday


I've read this many times & love it every time...


 


By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.

You are my "sisters." Yes, you and I, my friend, are sisters in sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediaty, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute evrything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the divsity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs. "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State(Province) to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have laboured to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and avalution commensurated with heir diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that manyof our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words "trick or treat." We have accepted that our childrenwith sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys ina concert hall. We are amazed at the grace of their pirouettes. We never, stop believing in all they will accomplish at they pass through this world.

But in the meantime, my sisters, the most important things we do, is to hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Wednesday, March 14, 2012

Wordless Wednesday

Wordless Wednesday generally brings a photo that says so much, without saying anything at all. This describes our kids with hydranencephaly, our little miracles without a voice. They cannot speak a word in many cases, but they say so much with their silence... more than some overly vocal, well-versed individuals can communicate in a long lifetime.

@Ashley Johnson (Jaidyn) I can't talk; but I still have lots to say
I found this on Pinterest. Are you a pinner? We are, follow us HERE.

From your child with special needs: “Now I lay me down to sleep, I pray the Lord my soul to keep. That should my talking voice never find its way, tell my parents it will be ok. Let them know I feel their love and give them hope when times get rough.” HOPELights♥ on Facebook.

Tuesday, March 13, 2012

Bee-ography Monday

It's Monday... and we're happy to share another bee-ography from hydran-angel, Oryen's, mommy Jerry Lynn. **If you'd like to submit your story of how a diagnosis of hydranencephaly has touched your life, email me at: President@HydranencephalyFoundation.org.
From Ry's mommy: I went for an annual papsmear. The NP decided to do a pregnancy test just because my menstrual cycle wasn't normal yet (6 months post partum from our first). The test came up positive (whoops!). I went home and Josh asked how my apt went. Told him they made me do a pregnancy test. He TOLD me it was negative. After I told him it was positive all he had to say was "Uh Oh" (hence why we call little man Uh Oh). He then proceeded to water our tiny little lawn... for two hours!

At 16 weeks I was at an ultrasound apt (high risk) and they told me I was having a GIRL!! I was upset because I wanted my little boy back. Along with the gender we also found out that our little one had a cleft lip. We opted for the amnio. A few days later the results came back to say I was having a boy. After arguing with the tech about the results and review of my previous ultrasound we found out that our "girl" was actually a BOY with gender anomolies. Somewhere before 22 weeks there were issues with my placenta producing enough HcG for him to produce enough testosterone,

Since we had the amnio results we decided to run chromosomes on Ry, Dad and I. Come to find out Ry had chromosomal abnormalities of #3 (missing a piece) #12 (duplicated itself to #13) and #13 (which was also missing a piece along with having a transduplication). Dad carried the abnormality of #3.

A few days later I realised I was leaking amniotic fluid. After confirmation they told me since I was only 16 weeks and some days that there was nothing they could do and that I would miscarry and lose the baby. After being stuck on strict bedrest at home my water resealed at 17 weeks. They took me off bed rest.

As we progressed with the pregnancy we learned that there was a heart condition, gender anomalies, cleft lip and that I had IUGR. At 32 he failed his BPP and NST and they decided to keep me for prolonged monitoring. After a few consitent contractions and another failed BPP they decided to run a contraction stress test. They administered the pitocin and next thing we know they had put me in full blown labor. I made it to 3.5 cm dilated when they realized. They took me off pitocin and immediately put me on magnesium sulfate for 72 hours to stop labor. That successfully stopped labor and I was thereforth hospitalized for 11 days total. I was sent home on strict bed rest once again after I hit 34 weeks.

A week later at 35 weeks and 1 day I went in for an apt and little man failed his NST again! I recieved a BPP which he failed. The blood flow to the placenta was diminished and it was causing issues. Dr looked at me and said "well you're having a baby today." We prepped for induction and within two contractions his heart rate was dropping drastically low. Time for an emergency c-section. So emergent Josh almost didnt make it and he was on hospital property.

Oryen Michael Scott Davis was born 10/24/2011 at 13:33 at 4 lbs 13 oz. I cried as I heard him squeak.


They took him to NICU where he was ventilated and stabalized. It was learned he had cysts on his brain along with an adrenal hemorrage. Neither which they were to concerned with. The next morning they took him off the vent and I was able to hold him for the very first time. Born with no hair on the top of his head he looked like a miniture old man. He was the cutest thing I have ever seen. 
It was a bumpy ride from the beginning. Because of the genital anomalies we were advised to do a sex change. So we mentally prepared for that by dressing him in pink. After about 3 weeks of being dressed in flowers and butterflies new hormone results came back surprisingly normal for male and he went back to being a boy. He sure did look cute in pink though!
After multiple attempts with multiple bottles and nipples and swallow study it was determined that it was in our sons best interest to have a G tube placed for feedings due the severity of the cleft lip and palate. So November 23, 2011, the day before Thanksgiving, our tiny little baby underwent 4 procedures in one. He had a bronchoscopy done to check for a cleft trachea which there wasn't, a correction of a malrotated small bowel, appendectomy, and a G tube with a nissen. Surgery went well and was accomplished in only a few hours. Recovery on the other hand was difficult. He had a lung collapse, contracted pneumonia, aquired severe pulmonary edema, and was experiencing severe bradys and desaturation. Along with those he needed a blood transfusion, which he contracted an infection from so he was also given a lumbar puncture to test for meningitis which thankfully came back negative.
He started finally coming around after weaning off his pain medication he was more alert and getting back to his old crazy self himself. We get a phone call the next morning at 5 am saying that he decided to pull his vent tube out on his own account. This would not be the last time. He extubated himself 3 times total. Thats when the Drs learned that no matter what he was going to do things his way. After the third time they decided to attempt high flow oxygen instead. To our relief it worked wonders.
After living in the NICU for a month and a half. We got to take our little man home on December 14, 2011. We were home for 37 hours before returning to the NICU for preventative antibitics due to the fact that he was having trouble breathing. After another 72 hour stay we were able to go home again.
We got to spend our very first christmas together as a family. New years was a wonderful experience also. In the time that we were home Ry rolled himself over at two months and was doing all the things normal babies do at that age.
On January 5, 2012 we went for a routine cardiology apt to have his heart looked at and discuss possible surgery. While at the apt Ry quit breathing. He went into full blown cardiac and respiratory arrest. He had to receive manual CPR and was transported by ambulance right across the street to the hospital. There he was once again, with tubes down his throat being sedated. While in the PICU, he crashed 2 more times and we finally came to the decision that it was best for him to be transferred to Denver Childrens Hospital for a possible trach.

While in Denver he crashed once more and the Drs decided there was an underlying cause to these episodes he was having. They thought back to those cysts on his brain from when he was born and decided to look at them again. This time they were not two little tiny cysts. They were all over his entire brain. He was taken for an MRI. From the MRI we learned that 2/3 of his brain was covered in fluid and he had a smaller than average brain stem. He was diagnosed with hydranencephaly malacia.
They said my son would never walk talk suck swallow or even survive. We were advised to for lack of a better term, pull the plug on him. We had countless arguments with Drs about quality of life and that what accomplishments he had made were not primitive like they kept telling us. We refused to give up on someone who fought so hard just to be in this world. We would not give up until he did. We pleaded with God. We pleaded with Ry. We were willing to plead with anyone we could just to make the right decision. And we did. We didn't give up on him. He astounded Drs and nurses.
Then on Feb 9 2012 Him and God were done talking and he decided it was time to go home. He pulled out his vent tube on his own. Drs say they don't know how he did it and I said that because he did what we asked. He didnt make us make the decision, he made sure we were with him, and he did it when he was ready. Our little baby knew more than we did and he knew it was time. We hold no regrets because we never gave up on him. He earned his wings breath by breath.

Oryen Michael Scott Davis 10/24/2011 at 13:33 - 02/09/2012 at 16:32. Our miracle has earned his wings!