Sunday, July 28, 2013

This video was made for the Children's Miracle network Golf Tournament in Sioux City, Iowa... it just so happens that the handsome little man featured here is one of our bee-buddies, Kayden! Thanks to his mommy, Shanna, for letting us share it with everyone here!

Saturday, July 27, 2013

FORE!!!




Good winds and happy greens to all of the golfers today at the 3rd Annual Pierson DeHart Memorial Golf Scramble in Indiana. Pierson was diagnosed with hydranencephaly and grew his little angel wings in 2009, after 22 months of blessings to his family here on earth. We know his memory is being kept alive with this great event and continues to shine on in the hearts of everyone who was fortunate to know him during his little life and even after!

Thank you to his mommy, Melissa, for the honor of allowing us to sponsor one of the holes today and share a little more about our foundation and the condition that so few people know anything about. Raising awareness is an essential step in our mission to ensure every child faced with hydranencephaly is given an opportunity to live the quality of life they deserve! 

*If you would like our help to arrange in event in your community, please email me directly at President@HydranencephalyFoundation.org


Annual golf scramble scheduled

Sunday, July 21, 2013

(Photo)
Proceeds from the third Pierson DeHart Memorial Golf Scramble will go to benefit Jace DeLong (above), son of Jerod and Sarah DeLong.
The third Pierson DeHart Memorial Golf Scramble will take place Saturday, July 27, at the Forest Park Golf Course.


According to organizers, lunch will begin at noon, with tee times set for 1 p.m.

The scramble is played in memory of Pierson DeHart, who died May 7, 2009, after suffering Hydranencephaly. He was only 22 months old.

Pierson was born July 30, 2007. While in-utero, he suffered a stroke and developed Hydranencephaly, which occurs when a traumatic experience cuts off the blood supply to the developing brain and sections of the brain are replaced with Cerebral Spinal Fluid.

The golf scramble was organized by Pierson's parents, Chris and Melissa DeHart, as a way to help others in addition to memorializing Pierson.

Cost to participate is $50 per person, which includes lunch and cart fees.

The 18-hole golf scramble will feature cash prizes for the top two teams.

This year, Melissa DeHart said all money raised will go to the family of Jace DeLong, son of Jerod and Sarah DeLong.

According to Melissa, Jace was born with Spina Bifida and Hydrocephalus.

Melissa said Jace is 18 months old and has had to have several surgeries and hospital stays during his short life.

"He also sees many doctors and has to travel to Indianapolis for most of his doctor's visits," Melissa said.

Two years ago, all monies raised were given to Carter Quinn, son of Joe and Stephanie Quinn. Last year, all monies raised went to Ella Hoffman, daughter of Case and Afton Hoffman.

"We have such a great community that has reached out and supported us during Pierson's life that we want to extend that same support to a family in the community facing a similar situation," Melissa said.

"The past two years have been a great success and we hope to continue with another successful year."

Tuesday, July 23, 2013

Toy-FULL Tuesday: Splish SPLASH!!

Sizzlin' Cool Bee Baby Pool from Toys 'R' Us

I know, it's summer time and what better way is there to keep your kids (not to mention the mommies and daddies and everyone else) cool? Water, right?

So, what's your favorite?

The beach?

         The backyard pool?

                  The sprinkler in the yard?

                         The baby pool you can stick your feet in?

                                 The pool at the YMCA?

                                          The hose?

Did you know that water therapy for kids with complex medical needs is beneficial beyond belief?

While aquatic therapy is a practice taught by certified physical and occupational therapies that was once heralded for it's ease of practice since the buoyancy and added hydrostatic pressure of the water aided in relieving patients of the pain experienced on land with weight bearing and/or range of motion exercises. However, aquatic therapy has expanded to include treatment for a BROAD range of treatment for varying levels of abilities in children and adults.

From Angelfish Therapy, which is a pediatric aquatic therapy center offering lessons and camps for children who require OT/PT for sensory or neurological concerns on the east coast of the US (I encourage you to check out their website for a ton of great resources and therapy plans you can implement at home on your own):

"Children with a variety of physical, sensory, developmental, or neurological issues are prime candidates for aquatic therapy.

Among the children we at Angelfish have successfully helped over the years are those with:  Autism Spectrum Disorders; Sensory Processing Disorders; Auditory Processing Difficulties; Pervasive Developmental Disorders; Down Syndrome; Cerebral Palsy; Spastic Diplegia; Multiple Sclerosis; Muscular Dystrophy; Hypotonia; Apraxia; Developmental Dyspraxia; Rett Syndrome; Periventricular Leukomalacia; Chromosomal Abnormalities; Hydrocephalus; Hemiparesis; Hemiplegia; Hodgkins Lymphoma; Juvenile Rheumatoid Arthritis; Asperger Syndrome; seizure disorders; sensory integration dysfunction; gross motor delays; motor planning issues; lack of core strength; ADHD; learning and language disabilities; and issues associated with premature birth"

So, playing in the pool is actually more than just FUN?? ABSOLUTELY!! And it isn't just in the pool, but the bath tub works wonderfully for achieving the same benefits!

So, what are the benefits and why would I choose this option for my child?


"Here are some reasons to consider aquatic therapy for your child:

  • Working in the water allows children to perform and learn movements that would otherwise be too difficult to perform on land.  Returning to their land-based program then provides them the opportunity to practice movements which with they have become more skilled in the water.
  • The physiological benefits of an 88-92 degree pool include:  decreased pain, increased range of motion, decreased sensitivity of sensory nerve endings, and increased joint range of motion.
  • Vestibular stimulation from buoyancy and resistance improves a child’s ability to integrate sensory information.
  • The viscosity of water gives a child time to react and experiment with the consequences of movement.
  • The hydrostatic pressure created when partially or fully submerged in water improves circulation, increases the work of breathing, and gives the body 360 degrees of deep pressure."
In fact, I believe SO strongly in the benefits of aquatic therapy myself that we even made time for it at our recent Global Hydranencephaly Conference in Dallas: 

From front green and clockwise around to the front pink: Natalia, Joey, Johnny & Savannah

Those rings are one of the very first therapy tools that didn't double as some sort of torture device for Brayden, right after the hard wood corner chair, neck brace, and a few other items that involved straps and were not appeasing. I discovered the Waterway Babies system in 2010, I believe, when we lived in South Carolina. Brayden was about two years old and had limited purposeful movement and a great deal of spasticity, muscle tightness, in all of his extremities. I was in immediate touch with the product creator, Nancy Higgs, who was amazingly wonderful then and continues to be now. I got Brayden set up with the neck ring and the pool and from there it was all history! 



Almost immediately he started purposefully moving his legs, then it was his arms a little more. He never quite grasped the consistent use of his arms during his time here, but there is no doubt that he got the leg movement down to a "t". And nearly every day for the rest of his time here, he took a dip with his neck ring... most often in the bath tub with ginger and other essential oils for added benefit. (you can read more on this topic at our soon-to-be-published website article "Therapeutic Bath" which will be up when construction progresses, thanks for your patience!). 

Waterway Babies had such a great initial impact on me personally, through personal experience with my own little man, so much that I have remained in constant touch with Nancy and recommended the neck ring to every parent of a child with limited abilities... that's no exaggeration, I truly love it, that's how obvious the benefits were to me. Then when GHF came along, Nancy graciously donated a swim ring for us to promote our new Facebook page. And two years later, she moved her schedule around to actually attend our first conference... which is where we gathered up some of our little bees for a swim in the photo above. You can read more about this particular system's benefits in a previous blogpost "Going for a Swim" or at the website for Waterway Babies.

The BEST part about any aquatic therapy is that it is easy and fun for all involved...

Some assistance items include (click on caption to go to original post):

Intex Swim School Deluxe Swim Vest

Pro Pool Pool Access Chair 

Combination Head Float and Stabilizer Bar


and if you're feeling REALLY bold, you can make this:

Make a Water Scooter for child with limited abilities

So, explore your options... but ultimately, you don't need anything but a body of water and your child with you. If you're extra fortunate, as our bee-buddy Chase, and you get to swim with dolphins during your time here... then you will benefit even more!













Monday, July 22, 2013

Mondays are for the BEES!


This is for the BEES....

All our bees that have been featured in our "Bee-ography" and/or "Meet the Bees!" series here on our blog will be recapped in this post with quick link to read their stories. Not only have we featured some amazing stories, but we have many more to update on and share! So, as you're catching up we hope you'll consider submitting your own new story or continuation from a previous post for us to share. There is no better way to raise awareness of the possibilities that exist for our little ones than to share about them defying all those odds set against them by the medical community.

A "bee-ography" is the story of the life of one of our bees, written by a parent or caregiver or even another family member, which showcases their journey with hydranencephaly. If you have written one in the past, you will find the link here below, and we would love to share a continuation of their journey. If you have not written one yet, please send one to us at President@HydranencephalyFoundation.org with pictures you'd like to include. We can send you a template to follow if that helps, just email a request for one!

August 9, 2011: Mason by his mother, Sue
August 23, 2011: bee-mommy to Brayden, Ali
February 13, 2012: Marsean by  his mommy, Krystle
February 20, 2012: Peyton by her mommy, Linsey
February 27, 2012: Mellissa by her daddy, Matt
February 4, 2013: Burkleigh by Aunt Krista
March 11, 2012: Oryen by his mommy, Jerry Lynn
April 16, 2012: Carsyn by his mommy, Paula
April 20, 2012: Brianna by her mommy, Barbara
June 25, 2012: "We Believe" video by Global Hydranencephaly Foundation

Bee-ography Template: this is just a guideline and not a set line of questions to follow. Feel free to share your child's story from your heart, but we would love for you to include pictures along the way!

Bee-Ography Submission
1)      Describe your pregnancy?  Was child diagnosed in utero? Any complications with pregnancy?  Any suspensions from doctors as to what may have caused the diagnosis?  What information did you get from doctor?
2)      What type of support did you get from doctors, family, friends, social  workers, etc….
3)      After you child was born, what type of surgeries and medical interventions were needed and at what age did the surgeries occur?
4)      What impact has your child had on your life?
5)      What type of information do you wish you would’ve had after diagnosis?
6)      What activities does your child enjoy?  Do they like certain toys, eating certain foods, comfort are they comforted with certain people.
7)      Any other pertinent information you would like to include?  Include as many pictures as you would like.  

"Meet the Bees" is our series showcasing one of our little bees in a photo collage with details about them: including favorite colors, nickname, past-time, interests, and more! Submit your info to Katie Wright via Facebook!

February 18, 2013: Brayden
February 25, 2013: Ethan
March 4, 2013: Brianna
March 11, 2013: Serena
March 18, 2013: Phillip
March 25, 2013: Damian
April 1, 2013: Enzo
April 8, 2013: Christian
April 15, 2013: Natalia
April 22, 2013: Johnny
May 6, 2013: Breanna
May 13, 2013: Khloe
May 20, 2013: Sophie
July 15, 2013: Chrissy

We look forward to sharing your own little bees with the world! Thank you for all that you do to help us on our mission of reaching more families through awareness and education!

Wednesday, July 17, 2013

Wordless Wednesday: a little attitude!

We had a fun-filled Wordless Wednesday theme over on our Facebook page today... sharing some of my favorites here for you all! (keep in mind that children with hydranencephaly are "thought" to not be able to show emotion, express dislikes, or even be aware of their surroundings enough to have a displeased opinion of what is going on... wrong, yet again!)
 
     Photo: I know I'm a little late but here is one of Damien's many faces.
                                                                               
                                 Photo: Grouchy Wordless Wednesday from the DIVA! Not liking therapy one bit!
      Photo: Grouchy Wordless Wednesday!     

                               Photo: Serena giving "The Look" and rolling her eyes!!

Thursday, July 11, 2013

Thoughtful Thursday: Parenting Extraordinary Children

When you start any journey, you look into the future with expectations. Sometimes, those expectations are filled with excitement or anxiety, maybe even both. Starting the journey of parenting a child with special needs is no exception.  


So there's times you feel the grief. That sting when a parent of a typically developing child has joys from milestones your child may never achieve. Other parents may even recognize your grief, your jealous, your struggles. They see you choke back that lump in your throat and smile for their joys. They may even take the time to try to give you their version of condolences. Or perhaps, they just remind you of how "strong" you are and that they could "never do what you do." 


 And when somebody tells you they "do not know how you do it", they don't realize you have the greatest inspiration of all. And sure, it's not easy, but it's worth it. It's worth it to experience every second of unconditional love that's given. It's worth it to be inspired by an extraordinary individual. It's worth it to experience a whole new world. 


Tuesday, July 9, 2013

Toy-FULL Tuesday: A Day in the Life

This week's toy-FULL post is a tad bit different. While we  often focus on one toy, today we have a post about using a variety of toys throughout the day. Incorporating sensory play and using toys throughout the day has significantly improved my bee, Johnny's, quality of life. Here's a sneak-peak into typical day of an extraordinary little boy:

Chasing around a 20 month old toddler must be tiring. I can only imagine the type of stamina you need to keep up with the plethora of energy that is ever-flowing through those little bodies. While I have a difficult time relating to the day to day life with a typical toddler, I am busy caring for a little extraordinary 20 month old myself.   My son, Johnny, was born with a rare neurological condition called hydranencephaly. Although my days aren’t filled with cleaning up after apple juice spills and stepping on toys left in the middle of the floor, they are filled with many challenges of their own. 

The diagnosis of hydranencephaly is a package deal. The package of a different life with a “grim future”, countless limitations, a lot of doctors’ appointments, adaptive equipment, and, most importantly, a cute, smiley little boy. That little boy has a lot of different needs than a typical toddler.

Many mornings are spent with a therapist of some sort. He sees occupational, physical, and music therapists and typically has two to three appointments with them a week. On the mornings that aren't spent with a therapist, it’s our job to make sure he gets his morning “work out”. 

We have been doing therapy with him since he was just a few months old. In the beginning, doing therapy with Johnny was a chore. Johnny’s screams probably made the parents and the children in the waiting areas anxious, while our hearts broke a little more each time. Sometimes we wondered if all the trouble was worth it. If he was so miserable, should we continue?   


We slowly learned ways to distract Johnny from the discomfort of stretches and muscle strengthening. His therapist learned his favorite toys and always had them ready for us upon arrival. As Johnny continued with his daily regimen, he started hitting milestones that seemed out of reach.  Seeing these improvements and Johnny’s growth we knew we were on the right path and that the efforts were worth it. 


When Johnny was about 13 months old, he started seeing a music therapist. She taught us ways to incorporate the toys into the stretching instead of just distracting him with them during the stretches. Now, we often use drums for him to hit or kick, hand cymbals to help him learn to bring his hands to midline or clap, and Johnny especially likes his waves drum because it’s fun to look at and  it makes cool sounds.


After morning therapies, Johnny has time to play. Typically, we try to have him play on his own, in his own way. Johnny doesn’t have consistent purposeful movements of his arms and hands, so simple toys that react with touch helps encourage him to move those little arms.  These playtimes also help him learn cause and effect, which may one day be a gateway for communicating using different communication devices!


Another obstacle Johnny faces is the inability to stand. Since he lacks the coordination and muscle tone it takes to support himself, he is unable to stand without additional support. Because standing is beneficial for his health and essential for growing little boys, he uses a device to help him stand. He uses this stander everyday, and spends up to an hour in it at a time. This is typically right after naptime, when he is fresh and his stamina is high.  Toys are crucial during his time in the stander to keep the time fun and they help allow Mommy to get some housework accomplished! 



During the evenings we usually do sensory play. This involves many different toys with different textures. We try to keep each daily session focused on one texture or feeling.  Touch and feel books, fabric toys, and kooshi ball toys are all fun things for Johnny to feel.

Our far from typical days are centered on our little extraordinary guy. By learning to add appropriate toys into the right parts of the day, we usually have a playful, happy boy to watch grow and thrive. Before we learned to incorporate toys into our daily activities, we spent a lot of the time trying to cheer Johnny up, or distract him from the task. Now, he is involved in what he is doing, likes it, and I believe he even now thinks his therapies are just another playtime!