Thursday, February 28, 2013

Thankful Thursday: Rare

Thank you to the Obama administration for recognition of the importance of this day... not just February 28, another day on the calendar, but one I hope you all will take note of. 
Hydranencephaly, as many of you all know, is a rare neuorological condition which affects approximately one in 10,000 births worldwide and only one in 250,000 in the US alone. Such a rare condition seems far less rare as families come together to offer support, guidance, information, and inspiration through the efforts of our foundation and involved families. 

Today our friends at EORORDIS (Rare Disease Europe) along with many other rare disease alliances across the globe recognize these rare conditions, many of which go undiagnosed and are untreatable. Research and awareness are essential in bettering the lives of those affected:

February 28, 2013 marks the sixth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 24 European countries.
On and around this day hundreds of patient organisations from more than 71 countries and regions worldwide, the biggest group of participants in all six years of the recognition, are planning awareness-raising activities converging around the slogan 

“Rare Disorders without Borders”

Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand!

Rare Disorders without Borders from the official website:

Fighting diseases which affect only a few people in each country and for which expertise is scarce and scattered requires cross-border cooperation.

Patients and their families who feel isolated because of the rareness of their diseases should know that there are more than 6000 rare diseases affecting more than 60 million people in Europe and the US alone. Most of these diseases are genetic, serious, chronic and debilitating. They affect people in similar ways. Reaching out across borders can help them find common solutions and remind them they are not alone.

Advances in rare disease research have more chances of succeeding if sought after internationally when hundreds of teams of researchers from different countries work together to understand the disease and find therapies. Financial resources for research will go further if pooled with other funding from various countries: This is the idea behind the International Rare Disease Research Consortium (IRDiRC) which has already rallied the support of 10 countries.

Policies in healthcare and social services which have proven beneficial to people living with rare diseases in one country should be standardised and replicated internationally. This is the idea behind the European Union’s call for countries to develop National Plans for Rare Diseases in all Member States by the end of 2013.This initiative is intended to improve coordination of rare disease policies at the national level – following a common road map – and then to harmonise them across Europe.

The theme for 2013 reminds us tackling rare diseases with an international perspective is particularly important, in terms of research, health policy and for the millions of patients and families throughout the world who can break out of their isolation though a vast international network of solidarity.

"There are over one hundred million people
living with a rare disease around the world.
Take down borders, for rare disorders. 
Show your solidarity today!”

Wednesday, February 27, 2013

Word-FULL Wednesday!

Check out our Facebook page to catch all of our amazing bee-isms (quotes we love oftentimes featuring our own little bees):

Tuesday, February 26, 2013

Toy-FULL Tuesday: Squooshi

Ok, well those of you who have been following us for some time know that our Toy-FULL Tuesday posts are all about toys... sometimes toys, sometimes therapy ideas, sometimes special needs equipment, always something that makes it easier for parents to provide their child with the best quality of life possible.

This week's post is no exception and I only wish I had found it sooner!! If you have typical children, these are a great find for them... if you have orally eating special needs children, this item is GOLD. Especially if your child eats a blenderized diet of homemade purees. You can even check out some great recipes by clicking HERE great that I would even eat them myself!!

Get your SQUOOSHIs, click HERE

Reusable food pouces

THE SQUOOSHI STORY, from the website

Squooshi, was started by a father-daughter team, Shannon Wren Waldis and Noel Wren, who were inspired to create a well-designed reusable food pouch that would be helpful to parents, fun for kids of all ages, and better for our environment!

“When my son was eating baby food, he loved eating out of pouches,” explains Shannon, “And I loved the playfulness and on-the-go convenience, but I felt awful giving him packaged food when I was preparing fresh nutrient dense, homemade food at home daily.   I also felt terrible about the waste and the expense of store bought pouches.”

As a noted designer and longtime foodie, Shannon began to brainstorm, and soon, she and her dad Noel, who has a background in manufacturing, were on a mission to create the best reusable food pouch on the market.

After two and a half years of research, development, testing (and more testing!) Squooshi launched in October of 2012. This three-generation company is a labor of love, and “We are very proud to see families enjoying the results,” shares Shannon. “Squooshi pouches provide a solution for today’s busy families and we are inspired everyday by our grateful customers.” 

Squooshi reusable food pouches are BPA-free, Phthalate-free, PVC-free, and Lead-free.
Squooshi reusable food pouches provide more flexible and healthy nutrition options: fill with your favorite grain, veggie, legume, dairy, and fruit combos!

Squooshi reusable food pouches reduce waste: no more throw away food pouches piling up in landfills and contributing to air pollution!

Squooshi reusable food pouches save you money on your food bills: pre-filled pouches cost between 1.50-2.25 each!

Squooshi reusable food pouches save energy: empty pouches require a lot less fuel for shipping and most pre-packaged food travels over 1,200 miles before it reaches your table!

Squooshi reusable food pouches are easy: in the car, at the park, in your kiddos's hands, less mess from broken jars, spoons, and trash!

We know you'll feel good when you see your little one having fun with Squooshi pouches, eating food you can feel good about, for your family and our world.

Shannon and Reid, founders

Here are some other GREAT designs:
Reusable food pouces

Sunday, February 24, 2013

Bee-Inspired: Incompatible? No

Just when you feel like there is no hope... remember to always "Believe in the Impossible!"

"What I find amazing to this day is how the brain can deal with something which you think should not be compatible with life," ~Dr. Max Muenke

read more:

Tiny brain no obstacle to French civil servant
Fri, Jul 20, 2012 

imageWASHINGTON (Reuters) - A man with an unusually tiny brain managed to live an entirely normal life despite his condition, caused by a fluid buildup in his skull, French researchers reported on Thursday.

Scans of the 44-year-old man's brain showed that a huge fluid-filled chamber called a ventricle took up most of the room in his skull, leaving little more than a thin sheet of actual brain tissue.

"He was a married father of two children, and worked as a civil servant," Dr. Lionel Feuillet and colleagues at the Universite de la Mediterranee in Marseille wrote in a letter to the Lancet medical journal.

The man went to a hospital after he had mild weakness in his left leg. When Feuillet's staff took his medical history, they learned he had had a shunt inserted into his head to drain away hydrocephalus -- water on the brain -- as an infant.

The shunt was removed when he was 14.

So the researchers did a computed tomography (CT) scan and another type of scan called magnetic resonance imaging (MRI). They were astonished to see "massive enlargement" of the lateral ventricles -- usually tiny chambers that hold the cerebrospinal fluid that cushions the brain.

Intelligence tests showed the man had an IQ of 75, below the average score of 100 but not considered mentally retarded or disabled, either.

"What I find amazing to this day is how the brain can deal with something which you think should not be compatible with life," commented Dr. Max Muenke, a paediatric brain defect specialist at the National Human Genome Research Institute.

"If something happens very slowly over quite some time, maybe over decades, the different parts of the brain take up functions that would normally be done by the part that is pushed to the side," added Muenke, who was not involved in the case.

Saturday, February 23, 2013

Bee-Inspired: send out your ray of sunshine

The Sunshine Song by Jason Mraz

Sometimes the sun shines on other people's houses and not mine
somedays the clouds paint the sky in a way
that takes away my summer time

somehow the sun shines upon you while i struggle to get mine
well if there's a light in everybody so send out your ray of sunshine

i wanna walk the same roads as everybody else
through the trees and past the gates
i getting high on heavenly breezes
making new friends along the way

and i wont ask much of nobody
I'm just here to sing along
and make my mistakes look gracious
and learn some lessons from my wrongs

Sometimes the sun shines on other people's houses and not mine
somedays the clouds paint the sky all grey and
it takes away my summer time

and somehow the sun shines upon you while i struggle to get mine
a little light never hurt nobody, so send out your ray of sunshine

oh if this little light of mine combined with yours today
how many watts could illuminate
how many villages could we save
well my umbrella's tired of the weather wearing me down
well look at me now

Well you sure look as good as your outlook
would you mind if i took some time
to soak up your life, your beautiful light, you got a paradise inside

I get hungry for love and thirsty for life
but much to full on the pain
when i look at the sky to help me
and sometimes it looks like rain

cause sometimes the sun shines on other people's houses and not mine
sometimes the clouds paint the sky in a way
that takes away my summer time

somehow the sun keeps shining upon you while i'm kindly standing by
if there's light in everybody, send out your ray of sunshine

you're undeniably warm, cerulean
you're perfect in desire 
Would you hang around

so the sun can shine on me
and the clouds can all roll away
and the sky can become our possibility
cause there's a light in everybody, send out your ray of sunshine

Friday, February 22, 2013

Parenting Resource: Babysitting

Our hydran-parents face many complicated tasks that most "ordinary" parents wouldn't think twice over. Hiring the neighbor girl to care for the kids for a date-night? That's out of the question. Finding a babysitter via the classifieds to help out while you run errands or get your hair done? Not likely. Even interviewing and discovering a great, trustworthy individual makes for many hours of training before you find peace of mind in leaving them alone... and we have all heard the horror stories in the news about seemingly safe places such as daycare facilities and preschools... eek!

The below article from USA Today gives a great glimpse. After the article find resources, with links, that you can check out if interested in finding quality care for your special needs child.

Special-needs children need special babysitters
By Cheryl Alkon, Special for USA TODAY 5/8/12

For Christine Quayle, finding child care for her son, Brian, was no easy task.

Diagnosed with hydrocephalus at birth, Brian had fluid around his brain. When he was 3 weeks old, a shunt was inserted to direct the fluid to his abdomen. Later, he was diagnosed with spastic quadriplegic cerebral palsy with dystonia, a brain injury that happened before he was born. Brian isn't paralyzed, but his movements are uncoordinated, with involuntary twisting.

Today, at 5, he uses a wheelchair, has frequent seizures, uses a stomach tube to ingest some food and medications, and uses a communication device operated by a head switch.

"We had a sitter for 10 months who I had to train for a few weeks," says Quayle, 37. 

"Things like how to transfer Brian into a wheelchair, or how to communicate with him. 

There are so many things you have to train somebody to do."

But when that sitter had a family emergency, she couldn't keep the job. Quayle turned to Specialized Sitters, a Colorado agency that matches families with child care professionals who have the training and experience to work with kids with special needs. Owner Joseph Ban introduced Quayle to Samantha McLeod, who had just relocated to the Denver area after working for two years in Mississippi as a teacher for children with severe cognitive and physical disabilities.

A welcome change
The difference was immediate. "Samantha just had it," says Quayle. "She was able to come in with very little training and take over. We've never had that."

Quayle, who works part-time as a registered nurse, says she feels comfortable leaving her son in McLeod's care, either during the week when she works or at night when she and her husband, Ed, want some alone time. "She could just jump in, and it was like any other kid where you show the sitter where the diapers are, and it's like, 'See you later.' We've gone on dates, and that's really nice."

A growing number of children are being diagnosed with autism, attention deficit disorder and other developmental or physical disorders, and it can be a challenge for parents to find a babysitter to watch kids whose needs are beyond the norm.

But several agencies now offer babysitters who have the appropriate expertise. Denver's joins Massachusetts-based Special and the special-needs division of national caregiving service in offering parents some options.

Specialized Sitters' Ban, 34, started the company after he and his wife, Nancy, 33, had trouble finding a qualified caregiver for their daughter, now 3½, who has sensory integration disorder, or problems with how the brain processes messages from the senses.

"My wife said, 'I wonder what families do with severe or moderate needs.' "

They reached out to special-ed teachers, paraprofessionals, and others and began the company earlier this year. Ban says they conduct extensive background checks, and he meets personally with each sitter to confirm that the person is qualified to work with special-needs children.

"Families would find people who said they had experience, and they would be vastly under-experienced," Ban says. also has roots in the special-ed field. Founder Jennifer Aldrich, 28, became a senior special-education teacher after caring for two brothers, one with cerebral palsy, the other with pervasive developmental disorder, years before.

Trust and understanding
Families would contact her seeking care, and she took to making announcements before her education classes at college to find qualified sitters. She launched the company last year and now has about 800 sitters, mainly in Massachusetts.

The smaller agencies work in the shadow of national website, which offers special-needs sitters along with care for elders, pets and children without special needs.

"Special-needs sitters have the opportunity to develop extraordinary relationships with amazing children and their families," vice president Lynette Fraga says.

"Ultimately, it is the quality of the relationships, based on shared trust and understanding, that will lead to a successful care situation.", a private company that launched in 2007, helps connect families with caregivers and is the largest and fastest-growing online service of its kind in the USA, says spokeswoman Meredith Robertson.

Based in Waltham, Mass., the site has more than 1 million care providers registered with the service and an average of 6 million people seeking care use the site each month.

Ultimately, it's the relationship that is the foundation for a great experience. Brian Quayle's sitter, McLeod, understands that. At 24, she has worked as a special-education teacher with severely disabled children for two years in Mississippi and worked at a camp for handicapped adults as a teen.

"That's where I fell in love, working with this population," she says. "These families and these kids deserve just as much love and attention as regular kids do.

"You can't do it alone. The parents need me, I need them, and the kid needs both of us."

Advice from providers of care for special-needs kids:
  • Be clear about your expectations: Know what you want, says Lynette Fraga of 
  • “Do you want your sitter to have specific training, experiences or credentials? Are you willing to train your sitter on medical or behavior needs your child has?” Experience in special ed is a plus, says Jennifer Aldrich of “This could mean the sitter works as a teacher, an aide or a nanny.” 
  • Do research. Look up a sitter’s name online to see what comes up. “You can learn a lot about character through a simple Facebook check,” Aldrich says. Get references. Contact past employers to determine exactly how the candidate worked best with children with similar needs, providers say. 
  • Ask open-ended questions. Let sitters demonstrate how they would handle a situation with your child, Aldrich says. Willingness to learn is key to finding a great sitter for a special needs child, said Aldrich. 
  • Don’t settle. “Find someone who works well with your child,” says special needs sitter Samantha McLeod.
Resources to Explore:
~You can also talk to your child's school where you may find teachers who are experienced in caring for your child's needs that offer in-home care services as well.
~Ask your child's therapists/doctors; word of mouth is a great resource
~If you have a college or university nearby that offers special education courses, use the school's bulletin board to post specific care needs.
~family members and friends 

Thursday, February 21, 2013

Thankful Thursday: Just for this Once

Our hydranencephaly community of families has been wading the dreaded season of colds, flus, and respiratory infections. For our children, who are already teetering on the edge of life here on earth simply because of their primary diagnosis, this time of year is especially difficult. Life is fragile... and sadly we all experience the fragility of it personally each time another little bee earns their angel wings. We all feel the pain of one loss, never mind the fact that they come in clusters and leave parents reeling with sadness and fear... those who are able to cuddle their child for another day find little solace as they share in the grief of another whose arms are empty. We all learn to appreciate every second of every minute of every day... we value those moments that others take for granted. What a blessed way to live... something to be thankful for when the world turns grim around us. 
I've had the following passage saved in a digital post-it note on my laptop for a long while and read it often... trying to live by it. I hope you all will try as well and be thankful for those moments that some of us can only hold as memories.

Just This Once 

This is a reminder to hold those we love close and make the time for them. Whether it's our children, parents, or spouse... the meaning is the same.

Just for this morning, I am going to step over the laundry and pick you up and take you to the park to play.

Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.

Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles.

Just for this afternoon, I will not yell once, not even a tiny grumble, when you scream and whine for the ice cream truck, and I will buy you one if he comes by.

Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.

Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.

Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.

Just for this evening, I will let you splash in the tub and not get angry.

Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.

Just for this evening, I will snuggle beside you for hours,and miss my favorite TV shows.

Just for this evening when I run my finger through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given.

I will think about the mothers And fathers who are searching for their missing children, the mothers and fathers who are visiting their children's graves instead of their bedrooms, and mothers and fathers who are in hospital rooms watching their children suffer senselessly, and screaming inside that they can't handle it anymore.

And when I kiss you good night I will hold you a little tighter, a little longer. It is then, that I will thank God for you, and ask him for nothing, except one more day...

Tuesday, February 19, 2013

Toy-FULL Tuesday: Noodling

I don't know how the weather is where you are, but here it is a little chilly to be thinking about pool items. Nonetheless, the day after Valentines day the pool supplies started hitting the store helves... the best of those supplies for kids with complex medical concerns & other special needs: 

foam pool noodles!!!

Here are just a few ideas and if you all have more, PLEASE share them with us!!

Sensory room garland (pool noodles sometimes come in different shapes and are so fun cut in to slices): 

How to make a Pool Noodle Flower Garland Make a Pool Noodle Garland
photos & ideas courtesy of

Sensory Room pool noodle OVERLOAD!!! 

Make a headboard or fun playmat, wedges, or ramps:

How to make a Pool Noodle Headboard         

photo courtesy of

Project - Pool Noodle Rooftop - Architizer
click HERE to read more on these chairs/wedges

Make a fun positional chair or standing incentive:

chair and ottoman made entirely of foam noodle-like tubes
photos & ideas courtesy of

Make paint stencils!!

Pool Noodle Painting Activity
photos and ideas courtesy of

Card holder (great for eye gaze prompts):

Positional sitting and safety:

Pool Noodle Shopping Cart SafetyCheap and Easy, Travel Bed Rail
photos courtesy of

Instead of bedrails.. Simply put pool noodles under the fitted sheet, on both sides. It creates speed bumps on the sides and a cozy little "nest" for your toddler.  Don't waste your money on fancy bedrails that you won't need for long anyway. Pool noodles are a simple, easy fix!

Water play... combining sensory, tactile, and motor skills:

sliced pool noodles and water ramp
Water Ramp with Pool Noodle Slices from CAUTION! Twins at Play!

Pool Noodle Marble Race Track by eschelinmarble run using pool noodles

Got to try this one. Looks awesome!    You will need some gelatin ( I used plain  and added kool-aid for color.  Make jello as for jigglers, then add to large tub of water.  pool noodle (cut into lilly pads), some plastic swamp creatures.
click HERE to find out how!
Homemade Linky-Doos: 
Pool noodles for countdown chain (I like it bc it's reusable vs construction paper) ((Great idea .. I think Alani and I will make a trip to Wal-Mart and pick up some noodles. This will definitely be better than the paper chain! ))

Lifesize Lincoln Logs anyone:
Life size Lincoln Logs made out of pool noodles! Yet another use for those awesome noodles!
click HERE for resource

Door stopper... great for those little ones who are are easily awoken, or to protect doors closing on tiny fingers:
Pool Noodle Door Stopper

Be sure to share your noodling creations with us via email or on our Facebook page at:

Monday, February 18, 2013

Introducing "Meet the Bees" Mondays

Our mission has always and will always be centered around the lives of those with hydranencephaly. We love to bring their stories to you each Monday through "Bee-Ographies". (The life stories of these little "bees" written by the parents/caregivers.) Because of the busy lives parents and caregivers of little Bees lead, we don't always have a bee-ography to share with you on Mondays. We still love to show the world our extraordinary "Bees", and are always looking for new submissions. While we would love to share a bee-ography written by thoe closest to the Bees every Monday, we have come up with a new way to share these cuties with you. 

We are introducing our "Meet the Bees" collages today. We are hoping to be able to show off a new Bee each week, whether it's through a "Bee-Orgaphy" or a "Meet the Bees" collage. We thought it was only fitting to start with the Bee who started it all, so without further ado...

If you'd like to submit your own hydran Bee's story for a 
"Bee-orgraphy Monday", please contact Alicia Harper at

If you'd like to submit your Bee for "Meet the Bees" please contact Katie at

Tuesday, February 5, 2013

Toy-FULL Tuesday: Junk!

That's right, my title says it... tons and tons of JUNK! You can put it all to great use to make an amazing sensory wall or curtain for your child: which in turn helps with vision, motivation for reaching and grasping, and follows my rule of giving your child:

"something to look at, something to touch, and something to listen to"

Super great sensory wall for visual impaired - Re-pinned by #PediaStaff.  Visit for all our pediatric therapy pins
This photo was taken on November 3, 2008 in Roggebaai, Cape Town, Western Cape, ZA.

So, start saving those soda bottles, lids, metal pie pans (Brayden's personal favorite), plastic thing-a-ma-jigs, and other recyclables... the shinier and nosier, the better. String them up with fishing line or thread or ribbon, pair those strings up with some rope lights... and voila! Great fun and inexpensive!

Monday, February 4, 2013

BUZZ: Happy 1st Birthday!

Due to technical malfunctions... this is a belated post, though not because we forgot or weren't thinking of how great it is to be celebrating a full year of amazing!! My sincerest apologies in the delay... but, without further adieu:

Bee-ography: The Beginning

One of our bee-aunties wrote this for a class and it gives such a great insight in to the lives of the families we represent... thanks Krista, for letting us share your experiences.

My Little Trooper

My shoes made loud squeaking noises as I paced back and forth across the hospital waiting room. My mom told me to sit down, but I simply ignored her. I was too lost in my thoughts to really care.

“It’s called Hydranencephaly. Your baby has about 15-20% of her brain and the rest is all a buildup of cerebrospinal fluid. It’s extremely rare. About one in 10,000 babies will suffer from this. The prognosis is generally very poor,” the doctor pronounced unceremoniously nearly three weeks ago.

“So what does this mean for my baby?” my brother’s girlfriend, Haley, choked out through gut-wrenchingly loud sobs.

“Honestly, I don’t expect the outcome to be good. If she’s born at all, there’s a chance she won’t make it through the night,” he grimly stated.

These words aren’t something a seventeen year old mommy and daddy-to-be want to hear, let alone the sixteen year old aunt-to-be. They’re the kind of words you don’t forget. The ones that are like a song stuck in your head. They haunt your every thought. They eat you up and consume you whole. They replay over and over again.

They’re the exact words I listened to inside my head on repeat and the ones that had me finding solace in a bathroom stall away from the tear-stricken faces of my family. As I let out tears of fear that I refused to let anyone see, I found myself uttering a prayer.

“Please, Lord, let her be alright. Let her live a happy life with her family. I love her already. Please, don’t take her away from us before we even get a chance to know her,” I finished as I wiped my eyes and wandered back to where my future awaited.

A few minutes later, Haley’s mom surged through the doors with tears streaming down her face and a smile as big as Texas stretched across her lips.

“She’s beautiful,” she whispered through her tear-soaked smile.

The room erupted in joyous declarations instantly. A chorus of “When can I see her?” is heard throughout the room. We were quite the group at that moment. Everyone was crying and wondering and thanking God. We were hugging and laughing through clouded eyes.

My mom and Haley’s grandma got to go first. I tried my best to wait patiently, but as my foot bounced uncontrollably harder with each second that ticked by, I found that to be impossible. I wanted to see her for myself. The desire to run through those doubles doors past the nurses’ station was as strong as ever. The two-at-a-time visitor rule should not be acceptable at times like these.

Finally, my mom came back into the room. The look on her face told me all I needed to know. My dad and I got to go next. I held his hand tightly in mine as we walked down the hallway past the Neonatal Intensive Care Unit, where my brother and Haley had opted out of running tests. The third door on the right appeared in my line of sight in no time at all.

There she was lying in a hospital issued baby bed that heated her skin. She was crying her little eyes out and kicking her tiny legs. Tears cascaded down my face like waterfalls. I had prepared myself for the worst, but I had not readied myself for this. A living, breathing angel was right before my eyes. The wracking sobs bubbled up to the surface and spewed out of my mouth and into the room. I wasn’t the only one, though. Nestled in to her hospital bed, Haley and my brother were wiping tears from the corners of their eyes.

My niece was born on September 23, 2009, at 11:58 am. Before that day, I never knew you could love someone so completely and unconditionally that you just met. She was and is still the absolute love of my life. I learned that day that miracles do happen and that sometimes, when it seems like the whole universe is against me, the power of prayer is astounding. 

So began our first battle of a raging war we were terrifyingly unarmed for. This set in motion an unstoppable force. Burkleigh Hazel Tribble was a trooper that day, and will go on to be the bravest soldier in the war against her disease.