Thursday, June 30, 2011

Bee Buzz

New things are continuing to happen at the Brayden Alexander Global Foundation for Hydranencephaly!

First of all we want to wish our adorable Brayden Alexander a super Happy 3rd Birthday!!! Hope you have a super happy day with all your friends and family!!!

We want to remind everyone of our silicone bracelets we have for sale. They are only two dollars each and that includes shipping! They can be purchased here. Also we now have a handy shopping cart/checkout right on the site for those. Any of Sonya's merchandise will still need to be purchased from her Etsy store.

The foundation  now has a YouTube channel! It is called HydranencephalyKidz. Please check it out. We would love to have videos of your kids to add to it. Picture videos or home movie clips of your kids would be great. We are especially looking for videos of the kids playing, interacting with family, laughing, enjoying activities, smiling, eating, or doing therapies. See a video posted about the foundation and some of our sources that is on the YouTube channel posted just below this.


Be Sure to click "pause" on the music player at the bottom of the blog to hear the music with the video... Enjoy!

Wednesday, June 29, 2011

Lost in a Cause: Hydranencephaly Awareness

Just a quote, short & sweet:

"A man who has never lost himself in a cause bigger than himself has missed one of life's mountaintop experiences. Only in losing himself does he find himself. Only then does he discover all the latent strengths he never knew he had and which otherwise would have remained dormant."

~Richard M. Nixon

Monday, June 27, 2011

"Bee"-ography Monday

Ethan was born to his birth mother via C-section. They found he possibly had hydran at an ultrasound right before his birth. His apgars were very poor and they did not expect him to make it.Attempts to intibate him failed but he finally showed them what a fighter he was and came around! He was life-flighted to the nearest children's hospital where he stayed in the NICU.

I got a phone call one afternoon asking if I would be willing to adopt a child with hydrocephalus. I immediately said YES! I didn't even know if it was a boy or girl when I hung up. They called back to ask if I wanted to meet HIM in two days. I could not wait! I was not sure what to expect since they said his hydrocephalus was quite severe. I did know I would love him no matter what! When I went in to meet him, he stole my heart immediately.  I got to hold him and feed him. As they told me the questionable condition of his brain and how he would likely be blind and possibly non-responsive, I was not really hearing them. He was staring at the stripes on my shirt and  holding each of his fingers up to me individually for me to stroke them. So much for blind and non-responsive.

I hated to leave him, but had to as they had not made a decision as I later found out someone else had originally wanted to adopt him! I had to wait several days to see him again before they finally called to say he was mine. I went up every day to the NICU to see him. At the first visit I took a list of about ten names with me to see which one fit. The ONLY one that fit him was "Ethan". The nurses asked what I was going to call him and even though I told them it was not his legal name, they couldn't write it on his crib card or clothing fast enough.

They weren't sure if they were going to do a shunt or not. At the time I did not know how important shunts are to relieve pressure and pain when they are needed. I was hoping he would not need surgery - mostly out of not knowing the facts. I was surprised one day to go up and discover he had gotten a shunt that morning! I was kind of upset I hadn't gotten to be there for him! It was the only surgery he would do without Mommy! Only a couple of days later they cleared him to go home with us!

The day I took him home I was basically begged not to take him home. They seemed surprised that I wanted him. He did not have a definite hydran diagnosis yet, but they felt he would definitely be completely dependent on a caregiver for life. They said he would be blind, deaf, non-responsive, never do anything purposeful, and not know his family.

His first four months were very stressful. He was adorable and we all loved him to pieces, but he screamed almost non-stop and hardly slept. He started having really bad seizures and had a bout with RSV. He was in the hospital several times. Once we got him on seizure meds and meds for reflux, he seemed to settle down and be a lot happier.

We started using Early Intervention as soon as he came home. We had an amazing team who were with us until he turned three. They helped us learn baby massage, how to position him, how to work with him, how to do therapies, how to feed him, and helped us get equipment we needed.

By the time Ethan was a year old he was much happier and cried almost never He got a g-tube at 8 months old as he was no longer able to suck his bottles. He ate some small amounts of food by mouth until he was four when we began to notice him aspirating. At that time we felt it was safer not to feed him by mouth anymore. We finalized his adoption when he was 10 months old.

Ethan started preschool when he was almost three. His teacher has been AMAZING. She includes him in everything they do. He is graduating at the end of July and I am super sad to see him leave! I know he will miss them too. I am known at the preschool as "Ethan's mom" If we are walking down the hall all the teachers and students have to stop and talk to him.

These days Ethan is quite happy and active. He likes to go out and about and gets very vocal. He loves to visit family and friends. Everyone just loves him. His smile can light up a room. Ethan has this overwhelming sweetness about him that everyone is drawn to.

Ethan enjoys watching movies on his DVD player, going for walks, playing with toys, looking in the mirror, listening to music, going out just about anywhere, and especially going to school. He can roll over a good bit and operate switch toys.

We tried several meds for his seizures over his first two years with little success. At one point he was having 20+ very long seizures a day. We started the ketogenic diet and it has really worked for him! Generally a few days a week he might have one or two brief staring seizures. Occasionally  a few bigger ones if he is sick. He has been on it three years now and I recently refused to entertain the idea of weaning him off of it.

While Ethan does have some cortical vision and hearing impairment, he does see and hear. He does know his family, he DOES do purposeful things and he is living a happy life. I remember once hearing how some of the other hydran kids had favorite toys they were attached to and hoping some day Ethan would too. Ethan does have a favorite toy named "puppy" he is very very attached to and I do so adore that.  Not a day goes by I don't thank God for sending me this precious boy. He teaches everyone so much. Everything he does, every little sliver of progress he makes, is a true miracle.

Sunday, June 26, 2011

Flashback Weekend

Another post from the Small Portion of a Life's Journey blog, the thought development of what led me to finding some of the most amazing people on the planet, other families faced with a diagnosis of hydranencephaly for their littlest love, to share a vision with in creating the Brayden Alexander Global Foundation for Hydranencephaly... Looking back, I see the determination that existed from the very beginning, and it continues to fuel the effort now. Be sure to visit our foundation's web site to follow our amazing progress:  We are now an official foundation, awaiting our 501c3 tax exempt status, and things are changing quickly! 

‎"Without inspiration the best powers of the mind remain dormant. There is a fuel in us which needs to be ignited with sparks." 
 ~Johann Gottfried Von Herder

Ramblings from a Mommy on a Mission 
Originally Posted June 20, 2009...

I'm not sure if many others experience this, or will understand what I'm even portraying with my thoughts through words...and I hope that anyone reading this doesn't take this post in the wrong context. But it's somethings I've pondered over for quite some time, and what better way to think it through than to share with you.

I like to think I have a wonderful support group, but it's not the support group I lived my entire life building. It's not family nor friends that understand the best... it's a new support group, full of new "family" who know just all too well the journey we are on. 

I received a little criticism in the beginning of this journey, during my pregnancy, for making so much of the details available to as many people as I could. It was a "private family" ordeal, after all, so it should be kept that way. We no longer live in the olden days when news didn't spread like wildfire. I felt that it was better for me to put all the information I had out in the open, to clarify any misconceptions and to make sure everyone that wanted to know the story knew it correctly. Not to mention the important fact that I felt great amounts of comfort in knowing that more and more people were saying a little prayer when they heard of our story. 

Instead of my true intentions, my sharing of this journey was misconstrued as a sad attempt to gain attention. Rest assured that attention, in a selfish way, is the last thing that I crave. Let it be known, that I normally like to keep to myself and am perfectly happy in my own little world with my family and the ones I love.

I will say, that although attention isn't what I IS what I want. I want more than anything to share our journey with as many people as I can, not selfishly, but to help others who are not as fortunate as we have been. I, personally, have been blessed with the optimism to keep going with a positive attitude (for the most part) on what could be, and is, viewed by most as a very dismal situation. 

I haven't exactly pinpointed where my outlook grew from, my husband (I LOVE HIM more than words can say) has always been quite positive in times of gloom and doom, so maybe that has a little to do with it. I also greatly related to an interview on some daytime talk show with Michael J. Fox discussing his book (that I've been dying to read) Always Looking Up: The Adventures of an Incurable Optimist. He too lives with great optimism under such great obstacles, and I heard there that it's been proven that optimism exists in your genes and isn't always something that's obtained. Regardless of where it came from, sadly not everyone is blessed with that ability, nor surrounded with supportive people. I say surrounded by, however, that isn't truly the case for us all the time.

My life took a very different path upon starting this journey. A journey that not I, nor any other soul on the planet, would have ever expected to make. No one person, close to me anyways, has ever voiced they're feelings on being part of this journey with us... I feel that many do it out of some sort of obligation, since that many are family and all. I have, however, in more ways than one, felt the feelings that people truly have. Actions really do speak on a much higher decibel than words could ever. Family, these days, aren't as close, nor are friends. Very few have become much closer, but most have drifted off to some far off place where the world is fair and innocent babies aren't teetering on the edge of life here on Earth. It must be hard, to know what to say or how to act, and I know first hand that in those moments it's easier to just hide from it. I don't resent anyone for feeling that way, I've been there, but I wish that those people knew that I would never expect them to know how to handle themselves under the circumstances. The wrong thing said can be overcome with a simple apology or the shear confession to how they feel. The great distance that grows out of this fear becomes a forever decision... once the separation is there, it becomes quite difficult to close the gap. It can take years, or I should say that it can be years wasted, ending when it's much too late and the reason for the journey has left.

I just wonder, how others living similar life experiences, have dealt with bringing the people who WANT to support the journey, comfortably closer? I like to think that most want to be, but are uncomfortable in doing so.... there must be a way for it to be easier.

My son, miraculously, is nearing his first birthday. I am so filled with joy in reaching this big day, in just 9 more days exactly...I never dreamed we would be so close. It saddens me, that many won't be celebrating with us. Not physically, I don't expect anyone to travel for a birthday and most would have to go far, but mentally I don't believe the happy thoughts will be with us, nor will we be top of mind to most at any given time on this momentous event. Again, no one knows what to say or what to buy or whether they should be happy, after all he is obviously not "typical" regardless of the obstacles he has overcome. He can't crawl, nor can he sit without a little help and he won't be digging in to his birthday cake with that great eagerness that most babies display on their first big day... he has, in my eyes, overcome so much and achieved greatness that many never do in a long lifetime and I wish that everyone could see it through my eyes.

Because of what this past year has meant to me, it has become my everything. "It" meaning, this diagnosis of hydranencephaly. It is my life, or it is a greater portion of my life. I want more than anything for everyone facing the same diagnosis, to know what it means. Not by textbook definition ending with death and ending soon, but truly what that seemingly scary word can wonderfully do in your life. Every day, nearly, I meet someone new who has been touched with a similar experience... personally. Sometimes, the fate isn't as great as we've been fortunate enough to witness. Knowledge is so very lacking when it comes to this, among many other conditions not well-known. More times than not, the same advice as we were given in the beginning is carried out til the end...weeks, maybe on a lucky occasion months later. That's how fast the end comes for too many. Babies with hydranencephaly are often not given the chance that every human deserves at life. It's sad, and it's true...and I believe that it will never change until more information is shared and babies are helped to thrive instead of sent home to die. 

So many people have been down this road before us, completely unbeknownst to me, and if I'd not found some of those people our road would have been a very short one just the same as too many before me. 

This is so true, in fact, that regardless where our journey now leads us...I know that it will lead me, personally, to reach out to as many people as I can. To find those people from the very beginning and share my knowledge and experience before it's too late, before they commit their babies to hospice, or medicate them on to their next home in heaven right after they have been forced to give up on any chance of being able to do anything else. Before these parents are stripped of any belief that there's hope...all by medical professionals who are gauging the value of these lives by a prognosis typed into a medical textbook. 

And hopefully while I'm on my journey, and while I'm putting it so out in the open, others will begin to understand that it doesn't always matter that you say the right things or know how to act. Understand that love and support doesn't always come from offering material objects as gifts, but that emotional support and the spread of awareness by sharing information and knowledge to help others can be the greatest gift of all...or if nothing else and better yet, a little prayer sent up on a regular occasion for those that are on the journey too. The journey is more vastly traveled than most can imagine...and that prayer alone will help millions, if not billions.

Friday, June 24, 2011

Certain Proof

Every single second, from the moment of diagnosis with hydranencephaly, is a struggle. The list of can'ts and won'ts is exceedingly longer in comparison to the cans and wills... fortunately, our little bees don't follow the rules assigned to them. One huge feat that many achieve is attending school, a feat that is a far cry from the "incompatible with life" prognosis at birth. This becomes a huge obstacle to the parents, to fight for the care their child deserves in the school system... to ensure their safety and that they are receiving the services they require in order to excel, not only on paper but in the every day school environment as well.

Certain Proof: A Question of Worth shares the lives of Colin, Kay, and Josh as they maneuver the education system... a system that claims to follow the belief of "No Child Left Behind" and "every child has a right to education." Both mentalities have a limit to who they apply to, children with severely limited abilities are very easily overlooked... Remember that children living with hydranencephaly are also living with cerebral palsy, this story could easily have been made about any of our children:

Film Summary
Certain Proof: A Question of Worth reveals the stories of three young American children who face segregation daily, and particularly as their families seek to formally educate them. Diagnosed as infants with cerebral palsy – an umbrella term for disorders to the motor control centers of the brain – communication for Josh, Kayla and Colin is often challenging and physically exhausting. No matter your cognitive ability or potential to learn, when you cannot speak or control your body in typical ways, it is nearly impossible to prove your intelligence or potential. For these students and their families, the seemingly insurmountable obstacle of proving their worth within the public schools is fraught with heartache, but also hope.

Josh, age 6, is confined to a wheelchair without speech and limited use of his hands. He uses non-verbal cues to hint at what he is thinking. Even though she has no proof, Dawn holds to the belief that her little boy is trying to communicate with a world that does not want to listen. She tirelessly advocates for Joshʼs education, but his public school is unclear what Josh understands or if he is capable of learning at all. The continual doubt renders his education little more than babysitting. Torn between fighting those that doubt her son and her own lingering questions of whether or not, 'he's really in there', Dawn seeks the proof she needs to help her son get the education he deserves.

An opportunity arises when a team of multi-disciplinary specialists invites Josh for a comprehensive assessment in order to determine his communicative potential. For Dawn, the thought of finally knowing if her son has real cognitive abilities is a mixed blessing. Either sheʼll be overjoyed or her biggest fears will be realized. Josh doesnʼt disappoint. Impressing each therapist with his skills, his mother finally gets the validation sheʼs longed for and the okay to keep her dream alive of someday hearing Josh communicate, “I love you, Mom.”

Imagine depending on a computer to say every idea youʼd like to communicate. Now imagine you canʼt use your hands to type and each word has to be entered using a stick strapped to the center of your forehead. Meet Colin, a 10-year old boy with enough charm to make any girl smile with just a twinkle of his eye.

His communication device enabled him to progress through the first two years of school, but the faster pace of third grade challenges Colinʼs ability to keep up. Solving problems and answering questions takes an enormous amount of energy as he tries to control muscles that are fighting against him. His mother, Debra, desires to have her son taught alongside typical children, but that dream gradually slips away as he begins to spend more and more time out of the regular classroom and into one-on-one special instruction.

Since his physical disabilities arenʼt allowing Colin to prove his knowledge and
comprehension in traditional ways, Deby feels the schoolʼs doubts are only setting Colin up to fail. Though the idea of inclusion is one that teachers and schools aspire to, the reality of teaching a child with severe disabilities in a typical classroom is beyond what most schools are prepared to handle. Both want whatʼs best for Colin, but have different views on how to achieve it.

Though she is able to speak, only those who know her well can understand. Cerebral palsy limits her mobility and communication skills, but not her spirit. A born leader, Kayla, along with her mother, Sandy, take on stereotypes at every corner they turn.The next corner happens to be middle school. When Kaylaʼs wheelchair rolls up to the doors of her new school, the teachers donʼt exactly meet her with open arms. Two of her teachers discuss their hesitation of having her in class and what affect it would have on the other students. How will Kayla be able to use a calculator or create a science project? Her classmates discuss their first assumptions upon meeting her and the unfortunate teasing that happens in middle school. Sandy readies herself for a long year of advocating for her child. Kayla readies herself for the same battle sheʼs always had to fight… to prove herself.

We hear from Kayla directly as she discusses the challenges and judgments she faces at school. Luckily, she maintains a sense of humor. “Whenever I start a new school, they look like a bomb hit them!”, she explains.

What the school soon finds is Kaylaʼs smart. The students start to realize that she grades higher on tests than they do. We meet Jessica, Kaylaʼs best friend, who sees behind her disability. From horseback riding to leading her science team, Kayla tackles each new challenge undaunted. 

 2 ½ years later
Although the assessment from the team of specialists years earlier showed Joshʼs ability to learn, Dawn shares that the school continues to have their doubts. They still have him doing shapes, colors and numbers. Things she knows he knows. For them the proof isnʼt there. Joshʼs work with a speech therapist outside the school system has yielded great results, though. He clearly has a “yes” and “no”. In an interview with both Dawn and Josh, we see and hear Josh answer poignant and revealing questions about his feelings towards his mother and himself.

Colinʼs struggles have worsened. Overwhelmed by the workload, his move to middle school has left him depressed and frustrated. The school says legally they cannot adapt his work from grade level standards, so they place him on a separate education track without any chance of earning a high school diploma, a path Deby desperately fights against. For her this isnʼt how inclusion is supposed to work. At the young age of ten, Colinʼs future hangs in the balance.

Kayla has now moved into her first year of high school. There is an unending deluge of homework every night. Sandy tells the story of a horrible night of schoolwork that left Kayla in tears. Even though her mom tells her not to do another problem, Kayla wouldnʼt stop. For her, there is no rest in proving her worth to the world.

How much proof is enough? Karen Erickson, Director of The Center for Literacy and Disability Studies at the University of North Carolina says unfortunately children with disabilities are being held to a different standard than typical kids. “When we can figure out how to teach these children, weʼve figured very important things to teach all children who struggle. Every child has the ability to learn in some way and our job is to figure out what that way is.”

The stories of these three children challenge us to rethink how we relate to and teach those living with disabilities.

Simply a prime example of one of the obstacles our foundation hopes to make efforts in overcoming... helping families receive the educational services their child, despite their diagnosis of hydranencephaly, deserves. Visit: for more information on the aforementioned film.

Thursday, June 23, 2011

Bee Buzz

There are a lot of new and exciting things going on here at the Brayden Alexander Global Foundation for Hydranencephaly!

Sylvia has added a necklace to her line of hydranencephaly awareness jewelry!

This lovely necklace can be purchased here.

We are now selling blue silicone awareness bracelets. To order please visit the merchandise page on our website.

We are having a raffle for a Scentsy Warmer of the Month Raffle. All you have to do is "like" the foundation Facebook page, if you haven't already. Then you need to recruit four people to do the same. More details can be found on the event info for the raffle on the Facebook page.

Don't forget about the prize drawing once the Facebook page reaches 1000 members! We will be randomly choosing someone to win one blue, inflatable aquatherapy neck ring from (a $35 value) in size Large (which will accommodate a child 20-40lbs/18kg)

The foundation is now a registered nonprofit! We are registered but awaiting final status from the IRS, which should follow shortly!

Monday, June 20, 2011

"Bee"-ography Monday

This weeks "Bee"-ography is told to you by our little Bee, Damien (with a little help from mommy, Jessica.)

Damien Zuchowski's Story

Hi my name is Damien Xavier Zuchowski.  My mom is Jessica, my dad is Dusty and I have 2 sisters Kayla (6) and Rylee (4).  I was brought into this world in Great Falls, Montana (Malmstrom AFB) on January 13, 2009 at 10:38am, weighing in at 6lbs. 14oz. and 19.75 in. long. 


  I was a handsome lil man.  I was a good baby for the first month or two, but I slowly became a very fussy and irritable baby. 

In March of 2009 my dad left for his very first deployment. He was to be training stateside for a month and then he was headed to Afghanistan for the next 6 months.  Seeing him off was very difficult and sad, we all cried a lot.  Shortly after my dad left I was beginning to be so fussy and crying all the time, and my soft spot on the top of my head began to feel firm to my moms touch.  My mom took me to the ER numerous times and each time she took me they blamed the fussiness and crying on colic or constipation. They even said that my soft spot was fine it was firm because I was crying so much. 

After about the 4th or 5th  time to the ER my mom took me to my pediatrician on April 21st, 2009 and told her that she wanted some kind of test done on my head to make sure there was nothing wrong with my soft spot feeling firm.   

They sent me for a CT scan and later that day my mom was told I had Hydranencephaly.  If that wasn't bad enough for my mom, they had read the diagnosis out of a book, my dad who is in the Air Force was deployed and in Afghanistan. My mom was taking care of me and my 2 sisters, Kayla and Rylee all by herself in a state where she only knew one person and the rest of our family were thousands of miles away in Pennsylvania.  The Air Force immediately asked my mom what children's hospital she wanted to go to since they couldn't help me in Montana.  They even told my mom that it would be days before an MRI could be done.  She explained to them that she wanted to go to Children's Hospital in Pittsburgh, PA since her family and my dad’s entire family only lived 2 hours north of there. They arrange a flight for 3 days later for my mom and I to be on but thanks to the crazy weather in Montana we didn't get to leave until the 26th.When we left Montana on April 26th there was 2 ½ feet of snow on the ground.  My sisters were able to travel with us after a lot of pushing on my moms part.  

 In the meantime the Red Cross contacted my dad in Afghanistan and arranged to bring him back to the states to see me.  Traveling from Montana to Pennsylvania with 3 small kids was not an easy task for my mom to take on all by herself but thank to some wonderful people on our flights it made the trip a lot easier on her.  When we all arrived in the airport in Pittsburgh my dad was there to pick us up. What an emotional time that was.  We came to find out that the Air Force only told my dad that I had taken a turn for the worst and no other details. My mom had to explain it all to him when we got to the hotel.  I had an appointment with the Neurosurgeon on May 1st.  They explained to us in more detail exactly what Hydranencephaly was and that I also had Hydrocephalus and that a shunt was needed to stop the pressure and swelling in my head.  They explained that they is no treatment or cure for Hydranencephaly and that most infants don’t live to see their 1st birthday.  They explained that the shunt would make me more comfortable and may prolong my life.  After speaking with a doctor that wasn’t reading to us from a text book we were feeling  a little better about the whole situation and were given the  weekend to make our decision. 
 We decided that I would have a shunt placed and on Monday they called and set up the surgery  with the doctor for May 6th, 2009.  The surgery went well, I had a little trouble waking up from the anesthesia so that gave my parents and the doctors a bit of a scare but I just must have been tired.  After I woke and they took me to my room I began to my bottles like a champ and the next day I got to go home.  My dad was able to stay stateside until I had my first check-up appointment, but after that he had to return to Afghanistan and finish out his deployment.  

 My sisters, my mom and I stayed in Pennsylvania with our family while my dad was gone. We never returned to Montana, it was pretty rough considering all are things were there, clothes, beds and toys.  Our friends and family were amazing and helped us out so much.  My life in PA was going good, I was eating and gaining weight, my mom made me work everyday on head control and strengthening all my muscles.  In August of 2009 I began having seizure, although at the time my mom and family members were unsure what they were.  I would cry so very hard and scream at the top of my lungs all while I stiffened my arms and legs and turned my head to the side and stuck out my tongue.  My mom did everything she could to calm me down but nothing worked, I would only stop when the episode was over.  After seeing the Neurosurgeon for one of my shunt check ups they scheduled me to see a Neurologist.  While we waited for the appointment on September 28th, 2009 I began Physical, Occupational and Vision Therapy with the Early Intervention Program.  On September 20th, 2009 I began running a very high fever my mom took me to the ER in the town we lived in near where we were living and as soon as my mom told them about my shunt and my diagnosis of Hydranencephaly they immediately called the Children’s Hospital in Pittsburgh to discuss what should be done.  They decided that I needed to get to Pittsburgh as soon as possible so my mom and I got to ride in a helicopter to get to the hospital.  After a very long stay in the ER in Pittsburgh they finally admitted me to run some test and to check on my shunt.  After all the test and a day and a half later we found out that my shunt was fine I just had a virus.  My Grandma came to Pittsburgh and picked up my mom and I and took us home.  I went to see a neurologist who was very nice, he put me on Keppra to try and control my seizures, after changing dosing with no real noticeable results he also added the medication Sabril (vigabatrin) within a week the seizures seemed to disappear  My dad was scheduled to come back to the states in October but since all our stuff was still in Montana when he got back from deployment that is where he went.  He stayed in Montana until November when he got orders to move to McGuire AFB in New Jersey.  We finally got to see him on November 18th, 2009 although he couldn’t stay in PA with us  for very long. He had to go to McGuire AFB to start work and wait for a house for us.  We spent Christmas in Pennsylvania with all our friends and family but shortly after Christmas we all moved into our new house in New Jersey. 

  After moving to New Jersey it was time to find and meet all new doctors.  It was also time to contact Early Intervention and get my therapy sessions back.  My mom spent a lot of time on the phone when we first got here.  We were living in a two story house on McGuire AFB.  My sister Kayla started school on January 4th, 2010.  Shortly after moving to New Jersey I started to have some small seizures.  Nothing like they were before but I now just jerked my head to the left for a split second and then returned to midline and seemed fine.  I didn’t cry or scream but my mom new instantly that it was a seizure. 

In October of 2010 an amazing group of people from the town my mom grew up in decided to hold a Haunted House Benefit in my behalf.  We returned to Pennsylvania to attend the 2 day event.  The Haunted House was amazing.  My sisters were so scared.  The Montemorenci Fire Hall and the Crew of the Haunted House were wonderful and did an awesome job. The turn out for the Haunted House was spectacular and my mom and I did our best to thank everyone involved.   After seeing my new Neurologist we made some adjustments in the dosage of my current medication but after months of playing with the dosage and no results we decided that it was time to add a new medication.  He added the medication Topamax.  In March of 2011 we moved into a single level housing unit on Fort Dix.  I’m still having seizures some days are a lot worse than others but we are scheduled to go and see the Neurologist next month.  Thanks to our newly found Hydran-families we have lots to discuss with the doctor.  Now that you know what my life has been like through the medical side I’d like to tell you a little bit about what my days are like just being me.  I enjoy getting my mom up very early in the morning usually around 6am after having her up half the night with me.  Its not an every night occurrence but it does happen.  I enjoy being a little stinker for her and refusing to eat my breakfast and take my medicine until about 8am.  I love playing with my mom and my big sister Rylee.  Rylee lays on the floor with me and talks to me and shows me toys. 

On Mondays I have therapy with Lisa she comes to play with me and help me learn to be more interactive with everyone around me.  Tuesdays its Nicole and Occupational therapy.  Wednesday is out-patient Physical therapy we get to take a ride in the car to go and see Nancy.  Rylee likes it there more than I do, all she does is play with all the toys while I gotta work.  Thursdays its Physical therapy again at the house with Maureen. Fridays I usually have that day free. Saturdays and Sundays change all the time but no therapy on the weekend.   I eat my lunch anywhere between noon and 1 after a good lunch with my mom and sister it is time to take my nap.  I usually take about a 2 to 3 hour nap depending on my mood that day.  I have my good days and my bad days just like anyone else.  After my nap its time to get my big sister Kayla off the bus from school.  Then its time to sit with mom while she helps her do her homework. 

After that the 3 of us love to listen to music.  My sisters like the girlie stuff but my favorite band is Nickleback.  My mom plays them for me when I’m having a really bad day and it helps to calm me down.  Pretty soon my dad comes home and its time for Daddy son time.  I get to hang out with my dad while my mom cooks dinner.  After we have all eaten dinner we hang out watching tv, talking about how our day went then its bath time for me and showers for the girls.  I enjoys my baths for the most part but some days I want nothing to do with them.  Then the girls go to bed and I get to hang out for a little longer till its time to take my medication and head to bed myself. 

One of  my favorite places to sleep is in my oversized bean bag chair. It curls around me and makes me feel like I’m being held by mommy all night long. That’s my story as of June 10, 2011, its kinda short I know but hey I’m only 2 I’ll try to update it as often as I can but for now that’s all folks.

Sunday, June 19, 2011

Flashback Weekend

On Optimism
original posting from May 15, 2009

"A pessimist is one who makes difficulties of his opportunities; an optimist is one who makes opportunities of his difficulties."
 ~Reginald B. Mansell

I don't have the foggiest clue who this Reginald guy is, but this quote really hit home with me upon finding it a few weeks ago. If it doesn't make sense the first time you read it, read it's my law of life these days!

I've been oftentimes accused of many things that are far from true, lately it's been that I'm living in a state of denial. I couldn't be further from the state of denial, than I am right now. I've educated myself in all aspects of hydranencephaly, what I'm facing by caring for my son, and I know the inevitable will one day come... there's no denying that for any person. No matter the life we live, death is the end. But I also know that to give up hope and not pursue on in giving Brayden the best quality of life possible, is just a ludacris idea as a mother. That is something that just isn't going to happen. I have my moments when I question what I'm fighting for when the fight gets to be neverendingly brutal, then my 'lil man and my girlies bring me back to reality to remind me I'm in control of their destiny...I'm setting the tone for the rest of their lives, regardless of how little or long it is! And I'm sure to provide them with everything they need to lead a wonderful matter the fight involved!

The question of "quality of life" comes up quite often, sometimes in personal conversations but more often in conversations behind my back in the form of whispers or worse, "I feel so sorry for....". The idea that I'm being selfish by sustaining my son's life with a "terminal" condition is the hot topic. His life isn't being "sustained" but is being LIVED, and that is just unfathomable to some. My son is living with a hydranencephaly diagnosis, he's not just the condition, he's a baby...he breathes, eats, plays, observes, loves, and ultimately he LIVES. He wasn't supposed to make it in to this world, he wasn't supposed to leave the hospital, he wasn't supposed to survive his shunt surgery...he's been surrounded by pessimism his entire little life. Some have distanced themselves from us and our story because they see things from the outside, but don't know what's really going on although I put everything out there to prevent any confusion and to educate everyone on the everyday obstacles he's endured and overcome. We take each day at a time and have been very blessed to have seen the improvements thus far, despite the odds, and although his "quality of life" may be less than great to some...although he may never have independence...he'll always be surrounded by optimism from the people he loves and that love him.

As much as I'd like to say that all the talk doesn't bother me, I'd be lying if I did. I often think that I should print up a small business-type card and hand it to people to direct them into educating themselves in regards to my son. Maybe one day I'll do just that. To hand to the people who stare, to the people who whisper, to the people who make snide remarks...the world is a different place to me now. I've been witness to some of the most appalling behavior from adults, it would be unbelievable to most. Ignorance is bliss, so they say, and many people live by that motto. How sad is that to say? The saddest thing is that oftentimes those people are caregivers of medically fragile children themselves, that are no more than just that...caregivers.

On the other hand, I've been networked to some of the strongest, caring, unselfish people I've ever met that have transformed my life and my views on the world. Other people full of optimism under the gloomiest of conditions, who stand up as if they're invincible in the face of undying pessimism. Those are the people that have ultimately inspired me to "make opportunities of my difficulties", to reach out and try to connect with more people on more share my story and be one of those people to others, and inspiration and source of strength and endurance. That's my opportunity so I'm taking it...

Monday, June 13, 2011

Un-Bee-lievable Tuesday

Eight year old Kira has had plenty of ups and downs with her therapies. In recent years mom, Michelle has tried many things to help. Oral baclofen was added to her medications to try and help relax her muscles. Relaxing muscles helps reduce pain and increases flexibility. This also helps prevent problems like joint dislocations.

Finding the right level of comfort is key. While high tone can be painful and cause some problems, having some tone is the way many kids are able to have more movement and do things like sit up or hold their head up. If a child becomes too floppy, these movements become very difficult.

In an effort to help find the right balance Michelle has been working with her doctors and therapists to slowly lower Kira's medication to find the right dose.

It seems they are on the right track!

Kira has recently been able to reach a sitting position.

 She was also able to get up on all fours with assistance. These positions were impossible for her just a few months ago. She had not been able to do them for a long time.

And with the assistance of a new TLSO to support her trunk/allow for better breathing - she has been able to work up to standing in her stander for up to 18 minutes! Previously the brand new stander sat idle for many months.

We look forward to hearing more about the wonderful things Kira is up to with her therapies as things progress. We are so proud of you Kira! Finding a therapist willing to assess and work with each child as an individual is the key. Kira's therapists recognizes that there are times that she can be pushed, and others that she must be allowed to take a break. This flexibility has allowed Kira to basically blow the socks off of her therapist's expectations of where she would be at this point.

Sunday, June 12, 2011

"Bee"-ography Monday

This weeks "Bee"-ography is about Bee ^Joshua^. It was written by his mom, ^Diane^. There is a special addition about ^Diane^ written by Bee Chrissy's mom, Angela.

 January 22, 1999-March 2, 2005

Joshua came to live with us at 18 days old. I received a phone call from Social Services asking if I would take a baby that was with emergency foster parents. They told me he had severe neurological problems and that his life expectancy was only 3 months. I was told we could go and see him at his foster parents' home. When we saw him it was just love at first sight. I wanted to take him home with me straight way. Joshua finally came to us on the 9th February 1999. 

Joshua has had several problems since he came to us. The first being in March 99. He started continually crying and didn't sleep for three days and nights. I rang the hospital to see his consultant who in turn referred us to another hospital. Once there it was determined that his head size had increased rapidly. The surgeon came to see us and said they would take him to theatre to fit a shunt to help drain his CSF. This to me was like someone speaking a foreign language. All I knew was he was going to have an operation. So it was frantic trying to find out all about shunts, and CSF. Then the surgeon came back and said he was not going to operate but aspirate the fluid from  his head. Which they did with good result. Since then Joshua's head has grown in proportion to his body and me monitor the growth very closely. 

At this time Joshua stopped sucking so would not take his feeds, so he had his first NG tube which he tolerated pretty well. Alfie was also diagnosed with Diabetes Insipidus at this time and given DDAVP. On the 14th of August 99 Joshua woke up quite happy for Joshua. We noticed at lunch time that he had cut his top front tooth. Then around 4 o'clock that afternoon he started having seizures, one after the other. We took him to the hospital where they tried four different medications before the seizures stopped. By this time it was after midnight. The nurse on duty told us to go home and have a rest and collect our things as Joshua would probably sleep right through the night. We had only been home a couple of hours when we received a call saying the seizures had restarted and the drug they had given him (Phenytoin) could cause cardiac arrest so not to be alarmed when we got back to the ward as he was on a heart monitor. We set off straight back to the hospital and were told on arrival Joshua did not respond to the Phenytoin and was in PICU. When we arrived at PICU he had wires and drips coming out from all over and had been given Phenobarbitone. (Thankfully the seizures were now under control.) We were then transferred back on to the ward but Joshua restarted having seizures again. Back to PICU. After 3 days we were back on the ward and allowed to come home after 3 weeks. We had another stay in hospital in September with seizures. They changed his medication and since then we have not had any real problem with seizures.  Joshua had his Gastrostomy in November 99. The surgeon came to see us and told us to expect Joshua to go to PICU after his operation. Owing to his condition he may take longer to come round and would start having seizures. We would be in hospital at least a week to 10 days. Joshua went to theartre at 9:30 am on Friday 12 November. He was back on the ward by 10:15 am with no problems. We came home on Monday 15th November as he had done so well. We have only had one slight infection around his gastrostomy site.

Joshua sleeps very little and whines quite a lot. He has completely changed our lives but we absolutely adore him. He is the light of our lives and everyone else that comes into contact with him just loves him. Joshua loves music and lets you know if he doesn't like a song. He responds well to different voices and knows when it's a strange voice. He certainly knows our voices and reacts differently to us. Different people say Joshua is so lucky to have us to love and care for him, but we are the lucky ones to have been given Joshua to love and care for. We are very lucky in the fact Joshua has a great medical team that truly care about him. Also he has great therapist's that work well with him. Joshua now goes to respite care which he really enjoys. Some times it is just for a 5 hour stay, other times it is overnight. The respite care house Joshua goes to only ever has 4 kids in at any one time. The kids all have different disabilities but are well cared for by qualified nursing staff.

[This story was originally written in 2000]

Joshua died on March 2, 2005 after a long illness. He was surrounded by the love of his family. 

After reading Josh’s story in Diane’s own words, it is easy to see how much she loved her little boy! She and Mike were great parents and advocates for him. It is with a sad heart that I let those of you who are not aware, know that dear Diane passed away last year. She had a minor surgery, with the goal of improving her health, and due to complications, she unfortunately lost her life instead.
I met Diane in 2003, at the very first Hydran Family Get-Together in Orlando, Florida. She and Mandy came all the way from England to see us all! It was such a pleasure to meet her and Josh! Diane was a warm, funny, and caring individual. Her heart was always in the right place, and she was a joy to be around. She was funny and outgoing and fiercely protective of her family and her friends. I remember laughing with her and crying with her, and I miss her friendship so much! She was truly a great lady!
Though we will all miss Diane, we can rejoice in the knowledge that she has been reunited with her ^Josh^, and we know they are playing and running and laughing together in Heaven. Our prayers are with Mike, as he mourns the loss of both ^Josh^ and ^Diane^. May he take solace in the fact that Diane’s Hydran Family will never, ever forget her!! Fly high ^Diane^ and ^Josh^…..until we meet again.

Saturday, June 11, 2011

Flashback Weekend

"The Good Fight" is an old blog post, yet again, from Ali's first blog (Small Portion of a Life's Journey) which is currently being picked apart, re-positioned between here and the foundation Web sites, and eventually deleted from existence. This post seems very fitting to the morning, one which seems as if a deja-vu to this very day on June 16, 2009... nearly 2 years ago to the date that it was first written. How wonderful that my own post was the dose of optimism I needed on this morning and the reminder of why our foundation is such a great necessity:

This morning was just one of "those" mornings. 

Mornings are often very hard for me... I used to think that it was a matter of not getting much undisturbed sleep, lack of sleep definitely does horrible things to your body and emotions naturally run high, but even when I do it's hard to wake up on the optimistic side. 

I always jump out of bed to check on Brayden, when he's ok I feel relief... if I stir a bit in the night, my first thoughts are about Brayden. If he's been quiet and soundly sleeping, immediately I feel that something must be wrong. I almost love it when he wakes me up throughout the night, I don't wake in the morning with that panic feeling. I will not ever go to sleep without checking his breathing. 

Lately, I find it harder and harder to just wake up and be grateful that my son is doing so well. I find myself, instead, dwelling on what could go wrong... or thinking that things have been too good for too long, and expecting the blessings to become fewer and fewer. 

As my day progresses, the optimism builds. It could be due to my lack of time to dwell on such absurdities, being a stay-at-home mommy to three busy children leaves little time for personal, inner thoughts. 

Sometimes, however, optimism finds me, due to a small reminder of what I'm fighting for. Those reminders come in many shapes and sizes. Something just as small as a grin from my 'lil miracle man, or a wonderful chat with my daughters about angels during a thunderstorm, or even just little fingers clinging a bit tighter to me than usual. 

Other times it's a message from someone I've touched, just as was the case this morning. 

This is the message I received that did it for me today:

"what an amazing person you are. I wished that my sons ex-girlfriend would have been like you and my grand-daughter might still be alive. I thank God that he has given you the courage to fight the good fight for your son. keep it up God will bless you always. I ask that God greatly blesses you and your family."

I hope she doesn't mind my posting this, I'm not sure how she found me... though I put myself out there to be found and am so grateful that I've touched her by doing something that seems nothing less than "normal" for me these days. As truly happy as this message made me to read, it saddened me as well, to be reminded that others have a harder time finding the right places, the places of great hope & faith, that I have found. 

I now have a clear motive with this blog, to reach out to as many people as I can... to give them greater knowledge about my son's condition, to inspire them to have endless hope regardless of the obstacles ahead, to help others who are at a place that I once was... a place of helplessness when it comes to helping a loved one, or worse, your own child. I only wish that I could more easily find others to help. I, too, started my journey with a new baby and an unknown diagnosis, as a single mommy with nearly 3 children.

A completely different person, a much more motivated and strong person, emerged during my pregnancy as this journey began.

Everyone says that life experiences are what make you the person you become, and I am now happy with who I am... but I needed help in becoming who I wanted to be. I don't even know where to begin, but I want to reach more people, help more people, guide them to where I find myself now. To the place where it's second-nature to fight, regardless of what obstacle is placed in their way. To the place where everything is a blessing, and very little is ever overlooked as just that. To the place where happiness is what you make of what you have, not what you are given in life.

Monday, June 6, 2011

Un-Bee-lievable Tuesday

This weeks Un-Bee-lieveable Tuesday story is an amazing story of a loving family who never gave up hope and a simple diet change literally saving a young man's life.

Chase came into our lives on 7/03/1996. Who knew that this little bundle was about to change our lives so enormously. We found out that Chase had hydranencephaly when he was 6 months old. The news that I received over the phone (Chase's mom and dad went to the doctor and MRI) was devastating. Just like everyone else the news was so disheartening. I couldn't accept what I heard and treated Chase as if he were normal.

Fast forward to 2004. Chase had a couple bouts of aspiration pneumonia and I was told a g-tube needed to be put in. I was shown how to change it and how to feed him and was given cases of pediasure for his food. I was told Chase would never eat by mouth again except to taste certain foods.(up until this point he was able to eat soft foods). As the months progressed, instead of Chase getting better, he had one pneumonia episode after another,vomiting and he now had asthma. I had to to get a suction machine, nebulizer and learn new things all over again.

After a year of Chase getting sick every other month I read the ingredients on the can of pediasure. I couldn't believe everything that was in this one can and Chase was getting 9 in one day. I started wondering if he was lactose intolerant. I was also wondering if the pediasure was making him sick. I took it upon myself to try changing his diet and bought a juicer a couple of books and a new blender.Within 24 hours of getting Chase off the pediasure his breathing eased and the vomiting stopped. This was the first change in Chase's diet.

All has been well with Chase until his surgery in 2010 to remove hardware from his leg. He never was one to do well pain meds. His pain management doctor put him on amnitryptaline which Chase had a massive allergic reaction to. As we got him better from that, he continued to not do well. He would vomit at least 2 days a month and then his blood pressure and body temp started fluctuating. By August I took him into his ped and we ran blood work and couldn't find any reason for what was going on. His ped told me that Chase was starting to shut down and she really didn't know what to expect from all this. Well Chase's vomiting increased to once a week his breathing became more labored. I was nebulizing every day, 3x a day.

We decided that we wanted Chase to have a wish to do something. I felt so helpless that we were losing him.  I so wanted one fun time with Chase. He received his wish to swim with dolphins and we were leaving in January. I prayed Chase would make it that far as he was getting sicker by the week.

The vomiting increased to 3 days a week. By Christmas I went to his ped asking if Chase's pancreas was failing. She said no - that would have showed up in the blood work she ran. Hospice was brought into our house in January of 2011. By now Chase was in pain vomiting 4 days a week and losing weight. Days before we left for Florida on Chase's wish - Chase pulled through and stopped vomiting. The trip was beautiful. It was so nice to see Chase so happy and healthy. I never wanted to leave.

Our trip was over we came home and we also came home to all the same stuff as before we left, only worse.When your child is so sick you end up praying not just for a miracle but peace for the child. Six weeks ago I got my answer as I looked up pancreatitis. All of the symptoms is what Chase was going through. It said the that the pancreas can no longer absorb meat protiens and starts to shut down causing vomiting to rid the body of the toxicity of the protien. I knew I needed  to get Chase off meat protein and start a vegan diet with him.

As I remade and started to reread all labels and learn about being a vegan Chase was getting better day by day. Six weeks later, Chase has stopped vomiting. His BP has leveled off, oxygen sats normal at 98 all the time, and I have not suctioned him this whole six weeks! He also has started to have normal BM's 3x a day every day. This has never happened in almost 13 years.

He is still striving to get stronger every day. He has been anemic for the past 4 years.  I am now curious to have blood drawn to see if that has changed, as his color has returned. Calories are a problem with this diet. But as I see it he wasn't getting anything before. He has gained 4 pounds though since he has started this diet and we are hoping that he will at least get back to his previous weight of  78 lbs.

I am also looking forward to going to the doctors and showing them how well Chase is doing now and I truly believe Chase is not deteriorating just yet.We are hoping to get him off hospice here in the next couple weeks. I have always believed in diet being able to fix many problems Chase has just come back from the dead to prove this. It is my wish for all the kids to become healthy and if a diet change can help I am here to help.

"Bee"-ography Monday

Addison Michelle Gibson was born October 17, 2006 after being diagnosed in utero with Hydranencephaly. It was a fight to even get the Doctors to understand that despite this diagnosis we wanted her for whatever time God would allow. After speaking with Doctors and being made to feel we had no other choice we signed a DNR before she was even here. 
Shortly after Addison was delivered via C-section she was put in a back room of the NICU and given a warm bed and food; she would have to be strong on her own. I can't tell you how many family members we had back there, seemed 20 at a time sometimes, visiting with her not knowing if she would be here when they came back the next day.
 Two weeks passed and it was clear she wasn't going to give up so easily. Addison was transferred to Houston Hospice shortly after her second week in the NICU. They didn't take many children there but felt that with her diagnosis that she met the criteria to be at their inpatient facility. Exactly a week after we were admitted to hospice Addison began to feed on her own from a bottle. Almost two weeks to the day we were admitted to Houston Hospice she was discharged.

Addison is 4 years old now, full of smiles, giggles and love. There is a sparkle in this little girls eye that pulls you in like gravity. She loves her bells and kooshball switch, any kind of music and her rain sticks. 

 Her favorite cuddly at home is her doll Sally,she is never without her when she is hanging out lounging! 

We visited Morgans Wonderland, a wheelchair accessible theme park, last March and she had a blast.

She enjoys playing on her iPad with her brother, 

attending her siblings baseball and softball games and of course cuddle time with mommy!

Every day with her is an absolute gift, 

I've had a Doctor pat me in the back for taking care of her because he said understood how much of a burden she must be on me  and my family. From that day on i have vowed to take a stand for parents that are left to feel alone and without hope. If you just believe in what seems to be the impossible, you might be pleasantly surprised as to what you get in return!