Monday, January 27, 2014

Bee-ography: Jayne Katherine

On Christmas Eve I opened my email inbox to discover the usual Google alert regarding new posts containing the word "hydranencephaly" within them and moved it to my "read later" folder.... 



Reading later was a little over a week later when things had settled down from the chaos of the holidays. What I discovered linked in that email was the following beautiful story of a little girl born in 1990 with hydranencephaly that was published in the Cross-Counties Connect from Minnesota.

As I had several times before, I contacted the author in hopes of being put in touch with the family. Although the ending to the article itself identified the author as the mother, I don't think I ever made it that far without tears welled up in my eyes; so, I was no less than thrilled to discover that the author is the mother. Thankfully she allowed for me to share her amazing words here with you all.

Sparkle of a special cut of diamond
Posted by Kris Langland On December 24, 2013 

Jayne Katherine, in her short life, shared a gift of 14-carat memories

The skillful touch of a diamond-cutter cleaves, cuts and polishes the diamond hidden within the stone.

Parents use that same type of finesse as they guide, encourage and nurture their children in order to bring out the special – and individual – attributes within each one. The end goal is for each child to be able to eventually unveil herself or himself as a well-rounded adult constructively adding to society.

Sometimes, however, parents and child – together – are not afforded the opportunity of the time it takes to achieve that result. Sometimes, a parent is only given a child to share life with on Earth for just a few fleeting moments. He or she is here – and then gone – seemingly in the blink of an eye.

Despite those few days, weeks, a child with such a short lifetime often has the ability to forever touch their parents and other family members – indeed, everyone they meet – with cherished memories and life lessons.

Such is the story – and eternal touch – of the sweet, short 15-weeks of the life of Jayne Katherine.

Face-to-face with frightening reality

JAYNE KATHERINE SHORTLY following her birth.



Jayne Katherine would have turned 23 this past November 29. She was born on a late November afternoon in 1990, entering this world with quiet, catlike cries; her delivery into life was relatively easy. Even so – even before the moment of her arrival – it was known she was going to be special. But no one knew just how special she would be; that over the three-plus months of her life she would be revealed to be a 14-carat gem providing an equal rating of memories.

Jayne was born with hydranencephaly – a congenital – and eventually terminal condition. Hydranencephaly is a physical anomaly in that the brain’s cerebral hemisphere – to varying degrees – is not there; did not develop.

Following her birth – and a number of CT scans and MRI tests – physicians determined that what they had believed earlier was indeed fact; the only developed portion of her brain was that of the brain stem, located at the base of the brain. The remainder of her cranial cavity – the space where her brain should have been – was filled with cerebrospinal fluid. Doctors told the parents this news, adding that the infant was blind, and probably deaf as well. They additionally explained to them that she did not have the portion of the brain that controlled her body temperature. They told them that the condition presented time limits on Jayne’s life.

The mother’s gynecologist and additional medical professionals were surprised that the pregnancy had not earlier ended in a miscarriage, that the mother’s health had not been compromised prompting an emergency situation, that the little girl had survived her birth delivery – or that – here she was – living life, defying the odds once again for babies with the anomaly.

As Jayne’s mother shares, remembering back to the time of her daughter’s birth, now more than two decades ago, “Once Jayne exceeded all of the physicians’ assumptions of her life expectancy, they veered away from providing us with any more predictions or certainties; they couldn’t. They could not be certain how long she would survive. But, they – and we (my husband and I) – did know that she was a strong girl – a fighter – which belied her actual health condition.”

The day following her birth, her parents took her to Sioux Valley Hospital in Sioux Falls, South Dakota (today, Sanford Health) for additional tests and care in the hospital’s Neonatal Intensive Care Unit (NICU). Those results concurred with what was previously revealed – Jayne’s condition would be terminal; her viability for for anything resembling a normal life – dark.

Since no brain had developed, the center of the nervous system necessary for coordinating and communicating body needs for life-dependent tasks, those tasks went unmet – and  could do so only for so long. Because she lacked the nervous system ability to control body temperature, a warming pad in her bassinet was a necessity so that she remained warm – not allowing her body temperature to slide.

When being held in cradling arms, she had to be swaddled tightly in blankets – the needed “hug” of warmth. Surprisingly, Jayne had the ability to suckle on the baby bottle and was able to be lulled into contentment with a full stomach along with the sense of touch and feeling of warmth.

Now that the determination of Jayne’s health condition was stamped as official, her parents were besieged with a flurry of decisions to make: how to best care for her and make her life comfortable, would that be at home or at some type of facility, what advanced health care she would need if she continued to survive and grow – and the most emotional decision of all – whether or not to place a “Do Not Resuscitate” status on their daughter which would allow the health care professionals caring for her to just allow her to pass away without undertaking any lifesaving measures if she went into cardiac arrest or other life-threatening distress. In the end, the parents decided that they did not want her to suffer; so, if it was God’s will, they would let her slip away.

Jayne’s parents took her home to care for her and to allow for a connection to grow between themselves and their daughter – as well as with their son and his sister. They went into this new family experience without knowing when the “sands of time” of her life would run out; not knowing if when they went to pick her up from her bassinet they would find her gone, or while holding her tightly in their arms, stillness would envelop her and she would pass away.

JON HOLDING HIS three-month-old sister, Jayne,
 days before seizures took over her life.


But, before making that decision, they held in-depth family conversations with their fourth-grade son, Jayne’s older brother, Jon. “He had to agree to this arrangement,” the mother of the children shared, “he had to be on board with it and we had to be there to keep him strong. Less than two years earlier, his brother, James, had been still-born, and now here was another sibling whose relationship with him would be short-lived as well. Jon admitted that he would be scared if it was he who discovered Jayne in her bassinet, her life here on earth gone. But . . . he also wanted all of us to be a family together at home – for as long as that would be.”

Cherished memories saved, life lessons learned as time slows

In somewhat of a surprise, Jayne flourished after becoming the fourth member of the family in the Mountain Lake home – thriving physically. She grew into a chunky three-month-old baby who liked to suck her thumb. She had big hands that ended in long “piano-playing” fingers; a healthy, raging appetite – and a very clear preference for cranapple juice over straight cranberry or apple juice, pinching tight her lips into a pout if the first drops she tasted through the bottle’s nipple were not that of her fanned favorite drink. She was held tight – and loved. She always wore a stocking cap on her head as an aid to help maintain her body temperature as close to normal as possible as  to hold onto her body temperature, as a large amount body heat escapes through the head.

SOUND ASLEEP IN her swing, her cap on her head,
swaddled between multiple layers of blankets – and sucking her thumb.

Over the course of those three months, Jayne celebrated her first Christmas – with Santa and Mrs. Claus making a special appearance. In addition, she was privvy first-hand to United States history, awake nights to watch CNN televise the first “shock-and-awe” of Desert Storm, as troops drove Iraqi forces out of Kuwait and back inside their own country’s borders. She witnessed Minnesota blizzards, was snuggled in blankets in her swing and celebrated love during February’s Valentine’s Day.

The day-to-day routine of life had been established as best as it could be.

Fragility of life makes its approach

That normalcy proved to be just a myth, as in late February the fragility of the little girl’s life made its approach; the “other shoe” the family had been waiting for – and dreading – did indeed drop. Jayne began suffering body-stiffening seizures; so frequently that her pediatrician’s hand was forced to keep her sedated at all times. She was fed by sending the formula from a syringe through a plastic tube inserted into her nose and eventually down to her stomach.

She was hospitalized in a Worthington hospital; it was no longer able for her to live at home and so contingency plans had to be drafted.

A guiding hand provides destiny

Those plans included moving Jayne to to the Home For Creative Living in Windom, a specialty skilled facility for physically and mentally challenged infants and children. However, the number of infants already at the facility was at the limit, and, although Jayne, as a Cottonwood County resident would take priority in having a bed – it would also mean that a non-county infant and his or her parents would have upheaval and changes in their lives.


Knowing that time was becoming short for their daughter, the parents dragged their feet in admitting her to the home, preferring to leave her in the hospital. Eventually, the insurance care provider placed limitations on that hospital stay; a date for moving to the home was set.

In an ironic twist that defies this world understanding, early on the morning of March 14, 1991 – the day that the parents were to be moving their daughter from the hospital to her new home, a nurse phoned to tell them that, “it was time.” When they arrived at the hospital, they knew it to be true; Jayne was ashen in color and breathing weakly and erratically.

For the next three hours, they took turns holding – and talking to – their daughter. As the mother remembers, “She was in my arms when . . . her life’s difficulties were over; she had moved on to a better place.”

Many lessons were learned, and memories made, over the course of several winter months in late 1990 and early 1991. The number one “chalk talk” in our education over this time is one of which most people are aware, but often skip over in the course of of their 24/7 lives – that life is fleeting.  And this is why celebrating the miracle of just being alive allows us to give a positive, long-lasting influence on our families, friends, neighbors – and strangers. That joy of the celebration is demonstrated in how we live our lives, treat and react to others and the love given to us that we share all others.

A  little more than two years later, the parents welcomed another daughter, Jill, to the family; a healthy girl, surviving intrauterine difficulties of her own.

If you have not already realized it, Mark and I are the parents of the little girl; the mother telling the story of Jayne’s birth and short life is – me.

Jayne was my daughter – and she had, indeed, the sparkle of a special cut of diamond.


JAYNE KATHERINE CELEBRATED her first – and only – Christmas
by wearing this Santa Claus-adorned jumper – and even
had a red and green and gold bow tied on her stocking cap.

Sunday, January 26, 2014

How're Things Stacking Up?



Having a child with complex medical needs is a difficult enough position to find yourself in as a parent.

Fighting to provide your child with the best quality of life possible and meeting adversity nearly every step of the way makes that difficulty feel nearly impossible. 

Complicate the circumstances even more by hindering accessibility of resources and services and creating varying levels of availability from one community to another; a challenge a little more expected when you're dealing with other countries but very much present here in the US as well. There are currently no laws mandating the availability of resources that help families when extra services are necessary for their child with complex medical needs. 

Last May, our friends at Disability Scoop shared the following details on the alarming comparisons between states here in the United States and the facts were both enlightening and alarming to me personally since our journey with Brayden took us through 4 states in 4 years:

States Get Ranked On Disability Services
By Michelle Diament

Arizona is the place to be when it comes to services for people with intellectual and developmental disabilities, according to a new national ranking.

The listing is part of a report set to be released Thursday by United Cerebral Palsy, which ranks disability services in all 50 states and the District of Columbia.

Specifically, the advocacy organization weighed each state’s track record in promoting independence and productivity, ensuring quality and safety, keeping families together and reaching people in need.

In addition to Arizona, the highest ranked states were New Hampshire, Oregon, Vermont and California.

Top performing states were largely clustered in the Northeast and on the West Coast. As in past years, the standouts represented both big and small states as well as those with high and low tax burdens. What’s more, the amount they spent to provide community supports for individuals with disabilities varied.

Mississippi was ranked last for the seventh straight year. Arkansas, Texas, Illinois and Virginia filled out the bottom five.
The report — which is produced annually — is largely based on data from 2011, the most recent available.

States are increasingly shifting to a focus on supports within the community, the analysis found. Currently, 38 states indicate that at least 80 percent of residents with developmental disabilities that they serve live in the community. These same states also devote at least 80 percent of their resources designated for this population toward community supports. That’s up from 14 states in 2007.

While some states outshined others the report authors caution that there’s work to do nationwide. Fewer than a third of those with developmental disabilities are employed competitively in the vast majority of states. And, waiting lists for residential services remain high, with 268,000 people in limbo compared to 138,000 in 2007, the report indicates.

Check out United Cerebral Palsy's interactive website "The Case for Inclusion: 2013" to find out where your state stacks up! You can even compare states if you're looking to relocate... a great option for military families or those who are frustrated with the battle to provide for their children in their current homestate. 

Other options available to visitors of the interactive website includes the ability to:

  • Compare state & national data
  • View state scorecards to determine individual state performance
  • Interact with the ranking map
  • See highlights of 2013 report
  • Advocate for areas needing improvement & promote key achievements
  • Learn more about states at the forefront of managed care and employment issues
  • Download full 2013 report and previous reports

Let us know in the comments how these results compare to what you've faced! How do you think this year's reports may look in comparison?

Thursday, January 23, 2014

Thought-Filled Thursday: ONE

I've met head-on with several nasty remarks and equally disgusting opinions on the topic of hydranencephaly over the course of the past 6 years. It's part of being an advocate... 
In case you are unable to read the details contained in the message above, here's a little background to the most recent conversation brought to my attention:

The topic is a news article on a little girl who is 6-years old living with hydranencephaly.
(she happens to be connected to GHF) Because the condition is deemed "incompatible with life" there is of course a slew of ethical debate comments. Most often these conversations turn in to personal attacks on the level of selfishness of the parents to make the children "suffer" and participants also tend to juggle around comparative links between the children and miscellaneous other species of animals, plants, and even inanimate objects. 

This particular conversation's point of note:

comment: "I don't think that to be human you have to have a working brain. And I don't think that you have to have a working brain to be able to be loved, cared for, and to contribute to society by your mere existence." 
response: "Well, you're wrong. You do. Without a brain, you're a shell. A vegetable. That's not, like, up for debate. You need a brain to be human." 

~from Straight Dope's Message Board (titled: The Implications of Being Born Without a Brain) boards.straightdope.com

Disgusted?? 

Me too.

What's worse is that this thread is one of the least disturbing I've had brought to my attention in the years since becoming a parent to a child with hydranencephaly. 

But it happens far more often than you'd like to imagine; and it's next to impossible to defend your stance in a forum run by like-minded individuals with less brain than these children with hydranencephaly. 

But, I still cannot keep quiet.

I still believe that it is more important to share our stories and speak up against the ignorance; if only the ignorance would challenge me directly instead of trolling around and creating discussion forums to mock and ridicule our families. 

I think we can all agree that as an individual we often feel powerless to make much of a difference in the world as a whole. 

So we just let it go.

This is a problem. Conforming to avoid debate or confrontation does not solve anything. Working to raise awareness and gaining greater respect for children living with these conditions, as well as their families, will always bring adversity. Along the way, it will surely stir up the trolls who like to come out and play behind their keyboards. 



Believe it or not, you alone can make a difference and I hope you will not just ignore the words that hurt you as a parent or loved one to a child with hydranencephaly; nor the things that hinder progress of our families and this foundation to change the way that the condition and our children are represented online and in every community.


Tuesday, January 21, 2014

Tried & True Tuesday: Globe-Trotting!

We've tried it all... 

sharing stories
bunking "myths"
squashing false "facts" 
threats

Ok, not threats... well, not usually ;)

But, the one effort that always snags the greatest amount of attention is a simple...

photo

It can be connected to a story, or not even one word at all, but one thing is guaranteed: 

it will ALWAYS get ATTENTION!!

So, in keeping to the tradition of using what works; we are kicking off a campaign that should have been started long ago.

That is until my own family, Brayden's family, "bee-napped" the star of the show!



This is Bennett-Buzzbee, & his frog buddy, the Globe-Trotting Awareness buddy to Molly & Milly (who travel for microcephaly) at:

Molly & Milly's Zoocephaly  (click the name to follow along on Facebook)

Our friend Heather was inspired to share her daughter's journey with microcephaly by sending Molly & Milly on journeys across the globe to connect families facing the same condition. Since 2012, Molly & Milly the Monkey Twins (for microcephaly) have been joined by Leo the Lion (for lissencephaly), Sunny the Bear (for schizencephaly), and our very own Bennett with his frog buddy (for hydranencephaly).

Bennett started his hydranencephaly awareness journey in Texas with bee-beauties Chrissy, Sophie & their family; bee-keeper, Angela, is our foundation's vice president and treasurer. 

read about his Texas adventures HERE

But since coming to the Harper household here in Washington late March of last year, we hadn't quite been able to let him go!

But now he's off for the rest of his journey to see our bee-buddies across the globe!


If you'd like to share your home with Bennett for a time, here's how:

Instructions for SIGN - UP & CARE of Globe Trotting Animals


1.) Fill out the mini-form below and put it in a message on this page via Facebook or a personal message to Heather Tuttle Sklar on Facebook.

Animal(s) of Interest: (Molly, Milly, Leo, Bennett Buzz-Bee or Soggy)

Your Name:

Your Child's FULL Name:
Brief description of child's disorder:

Address where you want us to send the animal:

2.) Heather will contact you with an estimate of the month you will be receiving the animal.

3.) She will then contact you when the animal has left the previous family's home.

4.) Once you receive the animal, you will find the animal in the box, with the following items (contact her asap if something is missing):

(a.) A journal 
(b.) a small photo album 
(c.) a bag or collection of items that the animal may have collected along the way. 

*** Sometimes you will also find a gift from the last family for your child.

5.) Let her know as soon as you get the visiting animal. She will then send you the address of the next family on the list.

6.) You are to keep Milly, Molly, Leo, Soggy or Bennett Buzz-Bee for a week (if something happens to prevent you for sending the animal on after 1 week, let her know as soon as possible!)

7.) While the animal is with you, have lots of fun!

- Take lots of pictures. 

- Put some pics in the included photo album (if the album is full, let me know if you want me to send you a new one or if you are able to donate a small one). Post some photos on this page and/or send some to Heather's personal Facebook account ~ Heather Tuttle Sklar (linked above)

- Please, use two or three pages of the journal to write about your visit with Milly, Molly, Leo, Bennett Buzz-Bee or Soggy (write as if you were that animal).

- Find something to represent the state or area in which you live to add to the animal's collection 

8.) On the 6th or 7th day of the animal's visit get her/him ready to be put in the mail. Check the list above and put them all back in the box.

9.) Send Molly, Milly, Penny, Leo, Bennett Buzz-Bee or Soggy on his/her travels!

 
I cannot WAIT to send Bennett off to continue his journey and follow along with the excitement he brings along the way. Be sure to share his journey and photos with us here at Global Hydranencephaly Foundation as well by emailing to President@HydranencephalyFoundation.org

Thursday, January 16, 2014

Thought-Filled Thursday

I HEART Maysoon Zayid!

Seriously, I do! But it's fairly likely that you don't know who she is....

so, let's fix that! 

I discovered her in my latest daytime obsession (which has just started today since I'm feeling in a funk) with having TED Talks on in the background while I'm doing miscellaneous research, writing, and what-not on the computer.

Ok, really I initially discovered her in one of my actor loves, Adam Sandler's,  movie You Don't Mess With the Zohan;  she was behind the beauty-shop counter. 



She's a comedian & writer, an actress, the co-founder of the New York Arab-American Comedy Festival

She's an absolutely bee-utiful Palestinian woman who jokes about being from New Jersey and Muslim *gasp*, high heels and fasting. She is very real and does get very serious when discussing the other factor making her part of the largest minority groups in the world; one in which, she points out, is also very under-represented in Hollywood...

she's disabled

Cerebral Palsy, the umbrella term that describes the limited muscular abilities that nearly always hovers over those with any neurological condition; hydranencephaly is no exception.

She mentions how her parents would never allow her to just "not do" something when the doctors would say she couldn't. Despite being told otherwise, her father taught her to walk by walking with her while she stood on his feet. 

Not only does she walk, but she walks in heels... even performed in dance on Broadway, was a soap opera star, and has accomplished so much in addition to being awe-inspiring. 

That's a family who lives and breathes "Believe in the Impossible!" and I'm looking forward to following Maysoon on her journey through Hollywood and in her philanthropy efforts. Here's her TED Talks video, bee-inspired:

Tuesday, January 14, 2014

Tried and True Tuesday: BRRR to the RRRR!

photo credit
Winter has been pretty brutal for a large chunk of the US and keeping ourselves warm is difficult enough without worrying over the level of warmth our children with complex medical needs are feeling. They cannot vocalize whether they are too cold or too hot and neither extreme is a place of comfort. 

So, how do you keep your child warm? 

Not to mention SAFE?

Wheelchairs, fasteners, buckles, and such.. complicates an already complicated circumstance.

Here are some ideas from our Bee-Keepers (parents of children with hydranencephaly) and others from our Facebook page:

"Bailey always had her own electric heating blanket that she used while she was up. We had a heated mattress pad to keep her warm at night." ~Kristy 

"Warm up the car, hat cover with blanket and cypriheptidine." ~Linda

"I heat a rice bag in the microwave and place over her feeding bag tubing before it goes into her body, cover with blankets keeping it somewhat close to her body. It helps warm her food/water and keeps her core warmer. Not too Hot!" ~Chris

"A waterbottle for those cold feet.... And a nice cosy blanket when at home or school!!!" ~Caroline

 "Electric blanket for bed and car. They make them that plug into the car. Lots of layers, blankets and ponchos you can easily put on and take off as your bee gets hot or cold." ~GHF volunteer

And some things that worked for myself for Brayden: 

"Brayden would love to have rice packs warmed in the microwave with a bit of  essential oil (lavender for bedtimes and eucalyptus for daytimes). For outdoor excursions, I was given the idea to put his jacket on him backwards. That way his jacket was not bulking up and making for an unsafe position in his carseat and wheelchair. The jacket could easily be slipped on and off for transfers. A warm hat was always a must and on extra cold days, fleece blanket to tuck around the lower half of his body and around his legs." ~Ali

Since then, I've discovered some other great options from other clever mommies. List with links to follow:

Wheelchair Cozy (make your own out of a child's size sleeping bag):
image from eBay




Providing adaptive clothing options to keep them warm, dry, and comfortable!





And the best resource that has been shared with me has been adaption from Sharon's Ministry:  

"Sharon is an amazing little girl who changed our lives forever. As we struggled to put words together about Sharon's life and her impact on us, there were no words powerful enough to describe our little girl. Love is the only word that came to mind. After struggling with these words, this video best showed Sharon's life and her impact on all of us.

            {see the video HERE}

While preparing this video, we were constantly reminded of the following verses from the Bible:

John 21:17 "The third time he said to him, "Simon son of John, do you love me?" Peter was hurt because Jesus asked him the third time, "Do you love me?" He said, "Lord, you know all things; you know that I love you." Jesus said, "Feed my sheep." [NIV]

Matthew 25:35-36 "For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me." [NIV]

Matthew 22:37-40 "Jesus replied: "'Love the Lord your God with all your heart and with all your soul and with all your mind.' This is the first and greatest commandment. And the second is like it: 'Love your neighbor as yourself.' [NIV]"

About Sharon's Ponchos: 

"We know Sharon had many seizures throughout her life. We could also see the devistating effects these seizures had on her already fragile brain. As she became older basic care-giving tasks became more and more difficult. One thing we were able to see immediately was her limited range of motion. Simple dressing was not only difficult for Sharon's mom, but could be painful for Sharon to stretch out her arms.


A bigger issue added to this was Sharon was always cold because she never moved. So now we have a problem. We have a child who is in physical pain when you put a coat on her and is too cold to go without.

Sharon's Grandma Sue, came up with the idea of using a poncho with a blanket across the legs. This made it easier to keep her warm and was used with a wheelchair as well.

Our goal is to provide these ponchos, free of charge, to anyone who may need them for their child."

To request a FREE poncho for your child from Sharon's Ministry, go HERE


If you have any other resources or creative ideas to keep little ones warm under complex circumstances, we would love to hear from you! 


Sunday, January 12, 2014

Bee-Worthy Share: Thought of the Month

On our Facebook page, which you can join as an audience support member by clicking HERE then clicking "like" there, we look forward to several regular occurrences:
*connecting with new families who stumbled upon the page and thought they were all "alone" facing a diagnosis of hydranencephaly

                          sharing our bees...
















and the "Thought of the Month" from our friends at You and Your Disabled Child on Facebook... 

Not only are theses thoughts easily to relate to, but they're perfect for allowing me to discuss a topic that myself, our hydran-families, and most families of an individual with special needs face. 

For January 2014: "Don't ever pity the parents of a child with disabilities - I can guarantee they are likely to be stronger than you, have a more generous heart than you, understand the real values of life more than you ever will, suffer more heartache than you could possibly imagine and take it in their stride, have patience in volumes beyond your comprehension and will undoubtedly experience unconditional love of a kind that will probably never come your way. Admire them, respect them, accept them, sympathize with them, support them - and maybe even be in awe of them - but don't EVER pity them, that is something they just don't want or need."

It has been nearly 6 years since I became a parent to a child with complex medical concerns of the biggest kind, a terminal condition; that moment Brayden was diagnosed with a brain abnormality during an ultrasound and we were encouraged to terminate the pregnancy. The worst emotion to be shared with me from well-meaning family, friends, and strangers was (and still is) pity. I know it is not intentional, simply an attempt to show empathy and understanding, but to be the subject of pity is a not so nice place to find yourself.

If you have a parent to a medically complex child in your life, there is very little you need to do to be supportive of them. 

simply "listen" and just "be"



Saturday, January 11, 2014

Community BUZZ: I Run for Matty

Global Hydranencephaly Foundation was honored to be represented at this morning's Ocean Isle Beach Bridge Run for Food. Our bee-buddy Matty had the honor of cheering on his big brother, Chase, who ran in his first half marathon.


 And we are ALL so very proud of him... Chase came in 9th overall, second in his age group running it in 1:27:58. 




Friday, January 10, 2014

Fact-BUZZ Fiday: The Sickies

Adults... if you are sick, please stay home!

If your kids are sick, please keep them at home too!

Germs are the one thing that we don't want to teach our little ones to share and we have to lead by example and not share them either!

Wash your hands... ALOT! 

Boost your immunity with heavy doses of olive leaf extract, vitamin C, zinc or find your nearest essential oils distributor for some Thieve's Oil or others for more specific concerns (or ask me, I'm a soon-to-be distributor).

Why the big deal? It's "only" the sniffles....

The sniffles can turn in to a life-threatening situation for a little one with a compromised immunity!!

And no, we aren't exaggerating... but even if we were, why question the possibility and risk a little life?

Feel free to print this image and hang it where it is visible to family, friends, and even strangers. 

And NEVER feel guilty for protecting your child's health.


Monday, January 6, 2014

Bee-ography Monday



Lily Nichole West was born at 25 weeks on October 12, 2013. Her parents are Kristin & James West. The doctors diagnosed her Hydranencephaly before she was even born. She weighed 2lbs 3oz. In addition to hydranencephaly, sweet Lily had other health issues and complications including hydrocephalus, requiring two surgeries, PDA, and lung issues.


On Sunday afternoon, December 29, 2013, her mama and daddy finally got to hold her without all the wires and tubes, and kissed her "goodbye for just a little while."

From Lily's Facebook page on her final day here on earth:
"This morning Lily was baptized just after 11:30. We had a very nice time with her in the few hours that followed. We cried, we laughed, we loved. She looked at us today while we talked to her in a way that she hasn't for such a long time. It really felt like she was saying goodbye. Close to 3 we decided we were ready, just as she was. The nurse gave her quite a bit of sedation so she wouldn't struggle as she passed. They turned off the monitors, took all the wires off and took the tape off her face holding the tube in place. They removed her tube and quickly laid her in mommas arms. I could barely hold myself together and I kept trying not to cry so hard because I was shaking. She started to aspirated and that's when I knew I had to pull myself together and sent for a nurse. They suctioned everything out and cleaned her face off while I kept holding her. I had an overwhelming feeling of calmness and just started really talking her through it. I kept telling her to do whatever her body needs to do to feel better. And I kept telling her it's time and that she can go. It was the most emotional experience I've ever been through. It was peaceful and she looked at rest. Her little face finally had no pain. We spent a few hours with her until we felt like we were at peace with her. All the love and amazing support from everyone has been so wonderful. Thank you to everyone. Thank you for out prayers, good wishes and thoughts out way. Lily is in our hearts forever and she will always be momma's baby girl. I feel so blessed to have been able to meet her and fall in love with another part of me. She has changed our lives forever and now she's gained her wings. Our baby girl is finally in no pain and at peace."

Sunday, January 5, 2014

BUZZ: Happy 9th BEE-Day!


BUZZ: Happy Heavenly Birthday!


Community Sunday: Resolution Volunteer

When Brayden was born, asi when most children with hydranencephaly are born, diagnosed, and given the long list of impossibilities; the least of your concerns is on beginning preschool in 3-4 years or kindergarten in 5 years. But for many parents in our community, that ideal milestone is met by their child with hydranencephaly; they start receiving early intervention services at birth and find themselves discussing transition to the school district by the age of 3 years old, despite the grim prognosis weighing heavy on the family's shoulders. 

The transition is difficult, most usually for the parent more than the child.

Did you make a 2014 resolution to be more active in your child's school?



Not only is it an easy way to stay close to your child without looking as if you cannot let go, but it is a way to build incredibly important way to build personal relationships with those who are filling your child's day when you aren't. The fact that your child cannot communicate the goings-on of the day, makes this even more important than instances with your typically developing children.

Think you don't have time?? WRONG!

A list of options from our friends at About.com

Seven Ways to Volunteer at Your Child's School: 
When You Have No Time to Volunteer at Your Child's School

1. Try Job-Sharing
Maybe you can't spare a morning or afternoon every week to, say, work in the library or help out in your child's classroom. But if you can arrange for the time once a month, see if you can split a volunteer job up with another parent or parents on a tight schedule. A little time helping out, seeing and being seen, is better than none.

2. Be a Class Parent
Often, this job consists mostly of making phone calls to warn of school closures or to gather donations for class parties -- things you can do at home, on your time, while still being recognized as a helpful parent. If there are responsibilities you can't fulfill, try splitting the job with another parent who can, someone who's happy to give up the phone-calling part of the job.

3. Look for Evening and Weekend Activities
Most schools have some activities outside school hours that require parental assistance -- dances to chaperone, refreshments to be served, enrichment programs to be taught. Additionally, there may be once-a-year activities like field day or field trips that you could make yourself available for. Keep your ears open.

4. Find a Long-Range Project
Does your school have a yearbook that's put together by parents? A school newsletter? A big fundraiser? An end-of-the-year celebration? Those are high-profile projects that often require evening meetings and extensive at-home work but not a lot of school-hours participation. Yearbooks are a particularly good thing to get involved in, since you can make sure your special child and classmates are well-represented.

5. Go to PTA Meetings
They're not the most fun way to spend an evening, but PTA meetings are good ways to find out what's going on in your child's school, and meet administrators in a non-adversarial context. They're also a great way to find out about volunteer possibilities in the four categories above that often don't get broadcast to the general parent population.

6. Attend Special Events
If you can't take time away from your child to volunteer in the evenings, then just attend the events with your child. Bringing your child to a school concert or play or game or math night makes both of you more a part of the school community, and can allow you some informal contact with school personnel. It's good to see and be seen.

7. Be a Benefactor
Here's an opportunity that takes none of your time, just some of your money: Ask your child's teacher if there's something needed for the classroom that you can donate. Teachers often spend their own money on classroom essentials, and you can earn some good-parent points by helping out. Other possibilities include donating equipment to the school therapists, books to the school library, or money to a scholarship fund. It's not as good as getting personally involved, but any contribution is better than none.

So, find a way to tie yourself to your child's school and find yourself feeling being much more at peace with your decision to place them in to an organized classroom; as well as working to build awareness of your child's condition and the possibilities that exist for them! You are their voice and only you can speak on their behalf when someone is trying to connect with them.

Saturday, January 4, 2014

Bee-Inspired: 10 Ingenious Inventions for People with Disabilities

Why is technological research so incredibly important? 

If nothing else, it works towards creating solutions for all of the problems faced by the individuals inventing them (or loved ones close to them). Some would say that these inventions are "impossible" but you know that we all promote more reasons to "Believe in the Impossible!" Perhaps not ideal solutions for those living with hydranencephaly, but any progress to promote independence, and ability despite inability, is reason for us to share!

...original list published on Mashable, by Matt Petronzio

  • Kenguru-car-wheelchair

    1. Kenguru Electric Car

    Wheelchair users have driven cars for a long time -- various adaptations and modifications allow for more accessibility. But there's a major disadvantage: Most people need to collapse their wheelchairs and transfer themselves into the vehicle, which can be time-consuming and difficult.

    The Kenguru -- from founder and CEO Stacy Zoern, who struggles with muscular atrophy -- is an electric car in which drivers can remain in their wheelchairs. It's considered a "community car," only reaching 25 miles per hour (the legal maximum for such a car), meant for nearby errands. According to the website, the Kenguru will be available "soon" in the UK.
    IMAGE:
     KENGURU
  • 2. SMART Belt 


    People with epilepsy experience seizures at any time, often without warning. In May 2013, senior engineering students at Rice University in Texas developed the Seizure Monitoring and Response Transducer (SMART) belt to detect signs of seizures. It can also wirelessly send messages to guardians or caretakers.

    The Smart Belt is meant for ages six and up, and is still in development at the time of this writing.

    VIDEO: YOUTUBE, RICEUNIVERSITY

    Braille-smartphone
    3. Braille Smartphone
    We've seen cellphones with braille number keys, but what about touchscreen smartphones? Sumit Dagar, a 2011 TED Fellow, is developing a phone with a screen comprised of a grid of pins. When the user receives a message, the pins form shapes and characters using "Shape Memory Alloy" technology.

    Dagar hopes to release the phone by the end of 2013, with a price of $185.

    4. Lucy 4 Keyboard
    With the Lucy 4 keyboard, people with limited or no use of their hands can operate a computer. The user mounts a battery-operated laser pointer on his glasses or headband, then selects keys on the custom stand-up keyboard.



    A woman named Janine, who has cerebral palsy, created Lucy, and she even made the website and an introductory video using her invention. The Lucy 4 keyboard allows people with disabilities to compute, while lessening fatigue.

    The executive director of assistive tech company Touch the Future recently gave a demonstration of the Lucy 4 keyboard at the Abilities Expo in Atlanta, Ga. Prices vary according to insurance policies and taxes.
    VIDEO: YOUTUBE, LUCYKEYBOARD
  • Eyeborg-neil-harbisson

    5. Eyeborg

    Neil Harbisson was born with achromatopsia -- he's more than just colorblind; he can only see in black and white.
    He created the Eyeborg, which he straps to his head, to identify colors through audible tones sent through bone conduction. The device can pick up 360 hues.
    Learn more here.
  • Dynavox-eyemax

    6. DynaVox EyeMax

    DynaVox's EyeMax uses eye-tracking technology for computing, watching television, reading books and speaking for people with limited mobility.

    The EyeMax's camera tracks the user's eye movements, allowing him or her to use the device simply by blinking or gazing.
    Dynavox offers a wide variety of tools and apps for people who need help communicating. Check out the company's website for more.
    IMAGE: DYNAVOX
  • Braille-edge-40-2

    7. Braille EDGE 40 Display

    The Braille EDGE 40 is a powerful refreshable display, meaning it reads content on a computer screen and converts it to braille characters.
    This particular model is interesting for its seven built-in apps (including Notepad, Scheduler and Stopwatch) and conveniently located navigation and function keys.
    The EDGE runs for $2,995.

    Ibot-wheelchair

    8. iBot Stair-Climbing Wheelchair
    DEKA Research & Development, founded by Dean Kamen, created the iBot with wheelchair users in mind. Standard wheelchairs, manual or motorized, often cannot handle rough terrains.

    The iBot not only navigates any terrain, it can go up and down staircases with its self-balancing technology, and even "stand" (elevate at eye level).
    IMAGE: DEKA RESEARCH
  • Irobot-scooba

    9. iRobot Home Robots

    While the Roomba personal vaccuum wasn't necessarily made for people living with disabilities, iRobot's series of home robots are very helpful for people who cannot easily clean their homes with traditional equipment.

    The Roomba isn't typically considered a technological triumph, but it's vastly underrated. These robots use localized navigation to clean their environments thoroughly. This is the same navigation algorithm as iRobot's other line of autonomous vehicles: military-grade bomb disposal units.
    IMAGE: FLICKR, EGAN SNOW
  • Deka-bionic-arm-thumb

    10. DEKA Bionic Arm

    The DEKA Arm, often called "Luke" (after Luke Skywalker), is a DARPA-sponsored project for people who received upper extremity amputations. The developing device essentially revolutionizes prosthetics, giving the user more control.

    The DEKA arm has been a topic of conversation for a while, but according to a recent Popular Mechanics article, DARPA is still pushing boundaries with the technology.
    IMAGE: FLICKR, MILITARYHEALTH
  • Google-glass-yellow

    BONUS: Google Glass

    Google Glass is often seen as a gadget for tech-savvy geeks who want to be connected at all times. But 18-year-old Catalin Voss is working to create face-tracking software for the augmented reality glasses, and it's a natural tool for users with autism and related disorders.

    Through his startup, Sension, the face-tracking engine helps people better recognize and understand others' facial expressions and, in turn, their emotions.