Tuesday, February 28, 2012

Rare Disease Day 2012




In approximately 2 hours and 11 minutes, it will be the official start of Rare Disease Day in the US for 2012; here's a little history:



History of Rare Disease Day


Rare Disease Day was first observed in Europe in 2008. It was established by EURORDIS, the European Rare Disease Organization. In 2009, EURORDIS asked NORD to be its partner in this initiative and to sponsor Rare Disease Day in the United States. Now, the concept is rippling out around the world. In 2011, over 60 countries participated.


Each year, World Rare Disease Day will be observed on the last day of February (Feb. 29 in leap years and Feb. 28 in other years). Our goal is to draw attention to rare diseases as an important public health issue that cannot be ignored.


To learn more about the global initiatives supported through rare disease day please visit www.rarediseaseday.org.


NORD/EURORDIS Strategic Partnership


In May of 2009 NORD and EURORDIS entered into a strategic partnership to catalyze transatlantic collaboration. The goal is to support policies and practices that speed up scientific discoveries and innovative treatments, provide access to the highest standard of diagnosis and care, encourage more patient-centered health care systems, offer a higher quality of information, and help break the isolation of the people living with rare diseases.


Through the partnership, patient advocates in Europe and the US are working together closely. Key initiatives include an international public policy advocacy blog, online rare disease patient communities and Rare Disease Day. NORD and EURORDIS are also establishing common positions on key advocacy priorities.


While hydranencephaly is recognized as a rare disease, a definition established in 1983 with the Orphan Act as occurring in fewer than 200,000 cases, our foundation continues to await our formal 501c3 nonprofit exemption and chose to continue to wait before becoming more involved. This doesn't mean we do not want to recognize these efforts, as well as our friends across the globe, not only those with hydranencephaly but other rare diseases/conditions/syndromes/etc. as well. In the US alone, their are about 30 million individuals affected by rare disease (that's a staggering statistic equaling 1 in 10 people!).


This year brings yet another initiative and theme: 


Focus for 2012: "Rare but Strong Together"



"Solidarity" the 2012 theme focuses on the importance and the need for collaboration as well as mutual support in the field of rare diseases, let’s show them our Solidarity!


“It makes sense to act together because we face similar challenges”


We aim at extending this sense of solidarity to society at large: 


Get involved in Rare Disease Day 2012


People active in the field of rare diseases are not alone and need not act alone in order to meet their objectives. Although few and far between, collectively they are many and by acting together will be stronger.


United we are stronger


Since patients are rare, expertise is scarce and people living with rare diseases face similar challenges, so acting together makes sense.


Rare disease patients all over the world face the same types of challenges:



  • Access to correct diagnosis
  • Lack of information
  • Overall lack of scientific knowledge
  • Social consequences
  • Lack of appropriate quality health-care
  • High cost of the few existing drugs and care
  • Inequities in availability of treatment and care
  • Isolation
  • Together we can do more



“Rare diseases is an area where collaboration is essential”


The following are areas where it makes sense to join efforts:



  • Access to correct diagnosis (Genetic testing, newborn screening)
  • Increase availability of information (Coding and classification, telemedicine)
  • Improve scientific knowledge (Registries and databases, international research platforms, multi-centred clinical research, development of drugs and diagnostic tests, training of professionals)
  • Mitigate social consequences (Specialised social services that would improve the quality of life of people living with a rare disease and their families, such as Help Lines, Respite Care Services and Therapeutic Recreation Programmes)
  • Increase provision of appropriate quality healthcare (International reference networks of centres of expertise, multidisciplinary care)
  • Improve access to the few existing drugs and care (Pricing and reimbursement, healthcare reform)
  • Eliminate isolation (Patients and families support and empowerment, networking and community building)
  • Building a better world for rare disease patients



Given the rarity of both patients and experts, most actions related to rare diseases have to be performed in cooperation between different countries, regions and levels. Progress for the benefit of rare diseases patients can only be achieved through close international cooperation.



Next year look for Global Hydranencephaly Foundation to be partnered with this invaluable advocacy effort on a grander level. But, in the meantime, it's not too late to get involved personally this year!! You have 2 hours to start celebrating the advances that have been made in diagnoses and hope for these conditions, while also sharing the word of how much more needs to be accomplished. Visit the above links to learn more, and find the campaign on Facebook, Twitter, YouTube, FlickR, and special needs blogs across the bloggy-verse. Be sure to watch the following "official" video of Rare Disease Day 2012 (*stop the music player at the bottom of the blog prior to start):

Monday, February 27, 2012

Bee-ography


This week's bee-ography is a beautiful tribute to his equally beautiful daughter, Mellissa, from hydran-daddy Matt:


My Darling Mellissa (click HERE to view accompanying video)
by Matt Rickard on Friday, June 10, 2011 at 12:16am ·


I want you to picture the most luscious green grass with blooming flowers and beautiful
trees. 

I want you to picture a young lady picking flowers putting them in her hair. She’s running around playing, skipping, singing. She doesn’t stop. It’s as if these were a fresh, brand new, never used set of legs. 

She has this voice of an angel. She sings like no one on Earth. 

All of a sudden she looks up to see this man. Her father in Heaven. 

An overwhelming calmness comes over her. He reaches out and takes her by the hand. 
He leads her to a house in which he has prepared for her. 

She says “It’s a magnificent house”, with a puzzled look on her face. 

He says to her, “My darling Mellissa, what’s your question?”. 

She says, “I had a nice house where I came from, but it had a wheel chair ramp on it”. 

He says, “We don’t need those here. Here we have no use for those things. My darling Mellissa, you are no longer captive to those disabilities. You are free to run and play and as your younger sister said, EAT ORANGES. Do you see those other homes next to yours? This is where someday everyone you love and cherish will join you. I have prepared a place for them as well, but it’s not their time.” 

“My Father in Heaven, may I look upon my family once in awhile, to make sure they’re  ok?” 

“My Darling Mellissa, you may watch over them every day.”

Friday, February 24, 2012

Flashback Friday: Ripping off the Labels


 

And it's Friday, once again. Considering the news is chocked full of controversy over right to life, pro-choice, birth control and other trivial topics that are top-of-mind on the political agendas... This post immediately came to mind with my own growing frustration  with a majority of the medical professionals community that maintains a firm belief that our children, living with hydranencephaly, are incapable of living a quality of life worth fighting for... to label or not to label:



Ripping off the Labels
By Ali Harper
Original Post: Small Portion of a Life's Journey, April 4, 2011


I don't know what is worse, having a diagnosis... or not having a diagnosis?! I am in touch with MANY families of children who find themselves facing the unknown for their child, with or without a formal diagnosis. Even WITH a piece of paper that tells them the "fate" of their child, no one knows that for sure! 


I've thought about this over and over again. I personally feel like having a hydranencephaly diagnosis for my son, a condition that is rare and terminal... one that I learn more often than not is merely skimmed over in medical school... is the death sentence. The label, not the diagnosis is the grim prognosis... 


Brayden has hydranencephaly, so he shouldn't be aware of his surroundings or alive for that matter. But, he is. He also has severe cerebral palsy so he should have difficulties all of his life, but he doesn't see anything as a difficulty. He is MISSING most of that important part of his brain, the part that supposedly does most of the work, but he manages just fine without it. So, what is the point in a diagnosis? Besides for the medical community to throw him in to a bin labeled, "not worthy of my time," and continue about their day?


Point proven, today another hydranencephaly mommy just received a "formal" diagnosis for her son. Mind you, this label brings a very grim prognosis... simply stated: death within the first year. Her son, he is twenty-one years old (we love you Malcolm!!) and living happily ever after. 


But there are those mommies who long to "know" what their child has, to have the answers... that label for us doesn't bring answers, it brings only more questions. Individuals should be treated individually, despite their diagnosis or lack thereof. If that were the general medical rule, all would be right in the world!


Natan Gendelman is the founder of Health in Motion Rehab which I have long been intrigued by since they offer many of the services I want for Brayden like neuro developmental, herbal, physio, massage therapies and more (unfortunately they're in Canada). This new blog post is why I love his practice so much, and envy those who are able to benefit from his beliefs:




Why treatment should be adapted to the child first, and his condition second
SUNDAY, APRIL 10TH, 2011 by Natan


When a child is diagnosed with cerebral palsy or any other neurological disorder, people often accept that there will be certain things which he can and cannot do. Yet, what we often forget is that that this is a child which we are labeling; a child who possess his own character, will, dreams, opinions and personality. Each person thinks, communicates and makes choices in his own unique way, and that is something that both the medical and therapeutic worlds cannot predict. In fact, I think that trying to do so would be a huge, grave mistake, and I apologize to those who do not think this way.


Every child is different


Now, I’m not trying to offending anybody here. However, a lot of times we see a child’s cerebral palsy or disorder first, and the child himself second. How does this change anything, you may ask? Well, if you asked a therapist if they have seen two children with the exact same condition,the answer would be no. That is because every person experiences life in different ways and different forms, meaning that one child’s cerebral palsy will look completely different from the condition of another child.


For this reason we need to remember that there is no template, no cookie cutter, and no pure recipe for treatment which can be applied to every child. Instead what we have to do is learn from each child as much as he can learn from us. Each concept or treatment has to be adapted to his own needs first, and to his condition second. Any minor cerebral palsy can become severe if it is not treated properly through his lifetime, because it is important to adjust to the individual changes taking place with the child himself, along with his growth and development.


Creating connections


With this in mind, I find it funny how we’re always getting stuck on the individual names of the therapies during this process. When we hear about physio, we think that it just treats gross motor skills. Occupational therapy deals with fine motor skills and daily tasks, while speech language therapy only comes into play when working on speech and communication. In reality though, can we teach a child how to move without communicating with him? We can’t, so to be successful in teaching a child, we first have to try our best to connect with him on his level.


When I work with kids, I try and understand where he is coming from, what he is and is not willing to do, and the ways in which he does things. Remember, a child’s movement and function comes from the brain. So if we don’t develop the brain, we cannot develop his function. Developing the brain, or the child’s cognitive function means that when we talk to him, we are essentially teaching him important life skills. In turn, this will affect his intelligence and thereby improve his motor and sensorial function.


In adapting treatment to the child’s needs first and his condition second, you will discover just how successful he can be as he grows closer to achieving independence in his daily life.


Do you have any questions about this article? If you need any help or advice, feel free to drop me an email at natan@enabledkids.ca. Thanks, and I look forward to hearing from you!


This article was featured on Pediastaff’s blog. Thanks friends!


Also, there is mention of our bee-friend Malcolm in the previous post... sadly, he has since joined his angel friends and earned his wings on Valentines Day 2012. 
**We still LOVE you and you're forever alive in our hearts! 

Thursday, February 23, 2012

Bee-Inspired: Thoughtful Thursday

From the Beliefnet site (and blogging from my iPhone for the first time ever)... I've had this saved and wanted to share for those mommies and daddies, even grandmothers & grandfathers or other loved ones alike, who have been touched by a diagnosis of hydranencephaly for a little one in their life. Sometimes circumstances become so overwhelming that you begin to feel yourself as failing... Tie a knot, hang on to HOPE, and never stop believing in the impossible:



Courage Does Not Always Roar


Do you have what it takes to deal with adversity?

How do you cope with doubts, fears and disappointments?

What inspires you to try again tomorrow?

When we think about courage, it's usually stories of heroism that come to mind. But for most of us, courage comes in a very different way. It's a quiet voice that gives us the strength to go on for another day, sometimes in the face of seemingly insurmountable odds.

Author Bobi Seredich understands first-hand what it takes to deal with adversity. She's a cancer survivor who has overcome a number of struggles in her own life. In her book, Courage Does Not Always Roar, you'll find encouraging stories about people just like you, who have found the courage to move forward and face another day.

Today we'd like to share a poem from the book by Paula Fox. Enjoy!

From Courage Does Not Always Roar
by Bobi Seredich

When life gets you down and the problems you face are certainly more than your share...

When you run out of strength and you want to give up because it's just too much to bear...

I want to remind you, my precious friend, that you have what it takes inside...

extraordinary courage that may not ROAR but it doesn't cower and hide.

It's the quiet voice inside you that says,
"Tomorrow I'll try again."

It's the courage to keep on going...
to see things through to the end.

You are not defined by this moment in time, you are not what has happened to you.

It's the way that you choose to respond that matters and what you decide to do.

Courage is not the absence of fear,
but a powerful choice we make.

It's the choice to move forward with PURPOSE and joy, regardless of what it takes.

It's the courage that's found in ordinary women who are HEROES in their own way...

exhibiting strength and fortitude in life's challenges every day...

Valiant women of exceptional courage
with enduring power to cope...

taking each problem one day at a time
and never giving up HOPE.

These brave-hearted women have great resilience and they lift each other as well...

bonded by a common understanding
each with a story to tell.

Wednesday, February 22, 2012

Tuesday, February 21, 2012

Toy-FULL Tuesday

What child doesn't LOVE the thrill of going as high as possible on a swing? Our little bees are no exception... 


Adapted Swing at Morgan's Wonderland in Texas

Natan Shai at the park with one of the greatest swings I've ever seen!

This guy would LIVE in his swing if he could!

Sometimes we have to make it work... and go a little sideways for fun!!
But for them, it's actually so much more than plain and simple fun. From eSpecialNeeds, including pictures also from their online store that are not included in the original article at their site:



Swing Therapy and Sensory Integration for Special Needs Children


Swinging, jumping, spinning and rocking are important to children not only for fun and exercise but also to help their bodies organize and to regulate their sensory systems. Vestibular input is one of the core elements of sensory integration therapy. Our bodies' vestibular system is the sensory system that provides the primary input about movement, balance, spatial awareness and positioning. It helps us prepare our posture, maintain our balance, properly use our vision, calm ourselves and regulate our behavior.


The amount of vestibular input varies depending on the child. Some children crave movement, while others may be motion sensitive. It is important that the sensory needs of the child being monitored to determined what is right for them. Some children may start to “stim” after a point and can become more aggressive or hyperactive offsetting any calming effect the swing may have had on the child. Controlled vestibular input under the direction of an occupational or physical therapist is recommended for children with sensory processing issues.


Movement is essential for typical development to occur in all children. Swinging can have a powerful impact the brain’s ability to process and use sensory information. Whether the child is linear swinging on a strap swing, cuddled up in a net swing for proprioceptive input or spinning in a rotating movement, all of these movements can act as a powerful activator on the body’s systems. Swings and a variety of other sensory input are used in this type of therapy. Therapists, parents and teachers can use swings effectively to reinforce any therapy objectives for children and provide sensory diets for special needs children. In addition, swings can act as a strong motivator. Since all kids like to swing (special needs or not), swinging can be used as a reward for positive behavior.



  • A swing apparatus can vary from a doorway mounted swing frame to a ceiling support eyebolt to a free-standing swing frame. Some systems available are modular and can be moved from one classroom to another with minimal changes. Consider the layout of your room and where the ideal area would be to position the equipment. If space is limited, ceiling mounted swivel hardware can be installed into the framework of a home of classroom. Doorway mounted swings allow the installation of a bar that does not interfere with the function of the door and can be easily removed and moved to another door. A variety of swings are be secured to any of these designs including: 
  • platform swings
Square Carpeted Platform Swing

  • net swings
Therapy Net Swing with Spreader Bar
  • strap swings 
Strap Swing
  • trapeze bars 
Trapeze Bar
  • cuddle swings 
Cuddle Swing
  • bolster swings 
Bolster Swing
  • high back swing seats 
Adaptive Swing Seat
  • and more



Once you have planned your layout, consult a product specialist who can then review your plan and make the proper product recommendations.


When choosing a swing and swing apparatus it is critical to consider safety at all times.



  • Adult supervision is always required at all times.
  • Be aware of floor, wall and head protection.
  • Make sure the swings are able to support the user(s).
  • Children who are seizure prone may require additional precautions.
  • Make sure the child has the ability to stop on their own at a moment's notice.
  • The child must want to swing on their own. Never force a child to participate.

Monday, February 20, 2012

Bee-ography Monday

It's that time again! This week's bee-ography comes from beautiful little bee, Peyton, and her mommy Linsey:


Linsey Mckee

I couldn't be more blessed and proud to have been chosen to be Peyton's mom. At 7 months pregnant, doctors told me that something was very wrong with Peyton. They said then she had hydrocephalus. If only it were that easy. Not only were and am I, a single mom, God just turned my world upside down and back around. At one day old, I was told Peyton had Hydranencephaly and she wouldnt make it past her first birthday. Well let the trials and heartache begin. By the time Peyton was 5 weeks old first surgery, chloraplexotomy, that only help a little as far as her head growing bigger. 3 months, our first shunt. For the first 6 months Peyton cried 6 to 8 hours a day, finally we began trying out meds. Finally something started going right. We were in and out of hospital a lot. Everytime pnuemonia or sickness came, she beat it. God had given me a fighter beyond belief. 2 days before Peyton's 2nd birthday, we were hit by a drunk driver, she was thrown into the back floor board. My sweet angel was placed in the hospital and only had to have a shunt revision. Age 3, in a 3 month period, hospitalized for pnuemonia 3 different times at 2 weeks each go around. To help with junkiness and pneumonia, I decided to have her submandibular glands cut to help with excess saliva, well it helped. Since then we have had to deal with minor up and downs. She has her fair share of seizures but I've found a med that helps. Her scoliosis is very bad with a curve of 58%, we are about to meet with the surgery to decide what to do. Peyton receives therapies and I've been able to get her evened out with meds and she's doing amazing. She's very outgoing, we travel and I treat her as normal as possible. She is currently in kindergarten. This past August, we were able through Make a Wish, to take a Disney cruise to the Bahamas. I wouldn't change a thing about my life and very proud to announce Peyton Olivia is about to celebrate her 6th birthday March 6th. She is still going strong. To all blessed families, our miracles are our purpose in life. God chose you for a reason, love them... 








Friday, February 17, 2012

Flashback Friday: Dear Professionals...


 
Flashing back to February 2009, from Small Portion of a Life's Journey 


Dear Medical Professionals: Pardon me while I offer up some advice
By Alicia Harper


Next, this post is exceptionally appropriate considering I have spent more of my last two weeks sitting on hold on the phone with various resources, doctor's offices, insurance companies, etc. while playing Farmville on Facebook. Not exactly what I'd like to call a very productive way to spend a few hours...but that's been the jest of it!


In the midst of this, I have found my self increasingly frustrated with the negative optimism that is tied to my son's diagnosis of hydranencephaly... not to mention the millions of other rare conditions that exist in the world, some without even a name! Needless to say, I happened to stumble upon the following list online... and have offered up my own words in parenthesis after each point noted!


Dear Professionals:  What Parents Want to Tell You
By Muriel Hykes, March 1999


1. Never predict the outcome for a specific case. You can give general advice, but caution that nobody can predict how this child will turn out. 


(I am pretty certain that this definitely should be the very first and foremost. Am I, as a parent who has experienced the trauma of being told to take my child home and wait for him to die, the only person that realizes that this does not always happen as planned? Indeed I'm not... that's why so many believe in miracles, because they happen just despite what the "professionals" say! You can make the big bucks doc, but I'll continue to live the optimistic truth by realizing that every child is different and the textbooks don't describe every case.)


2. Do not write off a complaint as, "Goes with the syndrome." Just because a child has one diagnosis, does not mean that all his other problems are due to that.


(The words, "Considering his condition, that is to be expected," has surprisingly not quite yet become the trigger to turn me in to a homicidal maniac, but it's close! I am not in denial that my son has hydranencephaly, I know what it is and what it means for him.... probably more so than you, despite your formal medical license. However, I also know that his head cold and cough can be treated promptly... just as if he were any "typical" child... so I expect it to be, thank you very much!!)


3. Refer the parents to a parent-support group. This will save you a lot of questions as well.


(Not only does this save you a lot of questions, but it prevents frustrated parents such as myself, from thinking you are a complete moron... let us network with the ones that know the story best, other parents on the same or similar journey as ourselves.)


4. Be open. Realize that the parents are going to be looking for a cure and will pursue all avenues. Respect that. The parents are supposed to be the cheer-leaders.


(BE OPEN. If I ask about alternative treatments, or adding supplements to the diet to improve this, that, or something else... don't give me the impression that you think it is pointless. It is never pointless, and it is an alternative treatment because it has worked for some one out there, so who's to say that my 'lil man cannot join that group of someones that it works for?)


5. When the parents are depressed and in shock, you be the cheerleader.  Find something good to say about the patient's development. Praise the parents.


(There is always something worth being grateful for. I know that I appreciate even the smallest little baby steps in development, as a giant leap compared to others... however, I feel that most parents with little ones who have extra special medical necessities would agree. Give us the truth, but point out something positive in the process... I know there has got to be SOMETHING there!)


6. Do not promote a therapy mindset. They should take time to enjoy the child as a child. And constant therapy appointments are no fun for the child either. Child first.


(This is exactly why I love Early Intervention services in the home, where I am taught to help my son myself... and not to fully rely upon therapists to do so. If you don't have early intervention involved, and you have a birth-3 year old... seek your local program out. Every state has one. I get to enjoy my little man, as much as I can... while helping him to reach his full potential, whatever that may be!)


7. Promote a team approach to the child's rehabilitation; practice "family-centered" care. Do not be surprised if other doctors have told the parents conflicting information or failed to tell them something.  Coordinate care with all other team members.


(Please allow me to offer your contact information to everyone else, I would LOVE for you all to be on the same page as myself! Do not act as a single party in the treatment plan, but help to grow as a group of care providers in offering every opportunity imaginable.)


8. Understand that most parents are new to this... all the medical terms, conditions and stuff. So please go slow and be patient with us.  But on the other hand, recognize that some of us are very well versed on our kids situation, and you need to address us as your peer in the treatment of our child.


(Nothing I despise more, than being withheld from information regarding my son under the misconception that I will not understand. If I don't understand, rest assured that I will very soon... just as soon as you explain it to me, that is why you're making the big bucks. On most occasions, I may know something you haven't learned... let me help you to help me, and to help others. I may not have that formal education, but I've got more life experiences than you could even begin to read about and take a test over!)


9. Most importantly, remember that your patients are little human beings who feel and hear, and do things just like other people. It just takes them a longer to achieve those goals. Be careful how you talk about them in front of them. Self-esteem, confidence, and acceptance major needs for everyone. Imagine what the child can become. Dream big.


(...YES! Don't assume, in my case, that since my son is missing a large portion of his cerebral cortex... the part of the brain that is deemed of most importance... that he just won't understand how you feel about him. No, he won't cooperate and interact with you if you don't interact with him, not because he can't but only because he doesn't want to. He is still a little person, he has a personality (contrary to popular belief). Be his friend, as well as his caregiver, and you will witness what I see everyday... the real picture of his condition.)

Thursday, February 16, 2012

Bee-worthy Share

If you're on Facebook, and a parent to a child with any degree of special necessities... please join the Mommies/Daddies of Miracles communities, which has now even grown in to a brand new web site/blog. I stumbled upon this there today and had to share:


Keymakers ~ Author Unknown
~~~~~~~~~~~~~~~~~~~
Some people see a closed door,
and turn away. 
Others see a closed door, 
try the knob
if it doesn't open...
they turn away. 
Still others see a closed door,
try the knob,
if it doesn't open, 
they find a key, 
if the key doesn't fit... 
they turn away. 
A rare few see a closed door, 
try the knob, 
if it doesn't open, 
they find a key, 
if the key doesn't fit... 
They make one.

Those parents who have been given such a grim prognosis for their child, they make life work for them just as a custom-made key for that unopened door. They do not settle for "no" or "the end" or on the notion that all hope is lost... they help their child grow to be the best they can be. 

Wordless Wednesday: Valentine Cuties












Monday, February 13, 2012

Bee-ography

It's Monday... the best day of the week, and one of the only days I manage to post lately! Hoping to do better this week! This week's story comes from our handsome little bee, Sean's, mommy Krystle:


On December 11, 2006 was the day I found out Sean was coming! What a Christmas miracle. And at 5:26 p.m. he was born. All ten fingers and all ten toes, just how every mother dreams. He was what had seemed to be “normal”. We were sent home on December 13, 2006! What an amazing day. Then as time went on at home Sean had seemed to very fussy! Something wasn’t right. And his eye was acting up. He had an infection that he could not fight. So on Christmas Eve I took him into the ER to see what was wrong. They gave him meds, said he was fine other than that eye and sent us home. Little did I know this was the beginning to many doctors’ visits.



But as time went on with Sean things were getting worse. Nothing seemed to be getting better. His eye was continuing to act up. His head had started to swell. Just at the soft spot, then went to the front of his head. The doctors had said they would do a CT scan and he would probably have to do surgery to let the fluid out. AT WORST! This is a day I will never forget!



We went in for the CT. Everything went smoothly, but our doctor hesitated to give us the verdict. He sent us home said he would get another doctor to look at it and he would call us. To be honest I wasn’t that worried. A few hours later I was called in to the office and this is the day that would change my life forever. I found out Sean had a condition called Hydranencephaly. I was told there was nothing they could do to help. And Sean would die before he was 3 months. And the life he would have wouldn’t be worth living. He would remain in a “veggie state”. I was sent home with nothing more than a good luck and see ya later!



I think back now on being told what was wrong with him, and I do know I was told in a normal doctor’s room. But my memory shows me a TINY room no bigger than a 3’ by 3’ box. I remember feeling as if my chest had been ripped out and although I could not imagine the concept that my child was dying my heart knew. I was crying uncontrollably, the doctor said sorry but he ran out of words to say so he just left. The nurse came in I think to get me tissues however she seen me then walked back out. I still remember her face. And the car ride home, I had to drive, I don’t even remember it. It’s all a blur. But I do remember getting home and as I walked through the door, still crying nonstop saying to my mom, “he’s dying, my son is dying.” She finally got the story out of me, and then I went to his bed picked him up and stood in a corner in cried for hours. My world fell so into shambles that I didn’t know what to do. Overwhelmed was an understatement.



He would need a shunt. But finding a doctor to do it would be half the battle. We traveled to see numerous doctors all over the Tri-State area. We found a willing doctor about 8 hours from we live. He had a shunt 3 days later after we learned his condition. The Neuro- surgeon who was willing to do his surgery sat me down before the surgery and told me I needed to understand he wasn’t fixable, and that this would only ease the pain as he dies. He told me he might die due to this surgery I was about to put him in and if that was something I can live with. And although at this point I didn’t even know what a shunt was, heck I didn’t even know a child could be born with such problems as this. I did know he needed this surgery to help his pain, so I fought for it.



He was a changed boy after this shunt surgery. More aware of EVERYTHING! For the next three months it was hard, but very joyous. Bittersweet if you will. I was always at the thoughts that every sneeze would lead to something worse. Or every cough would lead to the end. And trying to live like this and enjoy him. It was hard. You’re constantly torn between two worlds. I almost was scared to love my own child because of the risk of him being taken away from me. Most days I didn’t know whether to celebrate his life with me or start saying goodbye. For months I couldn’t even watch him sleep because that is how he would look when he passes. It was a scary world that can really take a toll on a mother’s heart.



When Sean was just over 4 months we were sent into an ambulance to the hospital. Sean’s shunt had stopped working! When we got to the hospital it was blood test. Calling doctors… A few hours after waiting Sean went off into surgery. Now I was sure I was never going to see him again! 3 hours later... Out came Sean. Breathing and crying. Just how I liked him! >sigh< We were told we would have to stay there for a week, since Sean had such a hard time out of surgery. In this visit that took a MONTH! He caught thrush very badly. Then caught Rotavirus the day after they took out the IV. Then one morning Sean FORGOT how to eat. He received a NG tube. And we were sent home for Mother’s day! (My first mother’s day!)



The next week back to the hospital for his very own GJ peg. This went like a breeze; Sean was a trooper at surgeries at this point! And then 3 months later he had the low profile GJ Button placed. No more major surgeries since. Now I am proud to say Sean is Five YEARS OLD. Each day is a miracle that I will never take for granted.


Sean remained relatively healthy till February 2011, he caught RSV that turned into Pneumonia twice. He fell asleep one day and didn’t wake up for a month. His body temp dropped below what a thermometer could read. I would put him in a super warm bath, almost hot then put him in clothes from dryer, then his snow suite then under a heating blanket. Just to get a temp to register. I was doing breathing treatments and Vest therapies every 30 mins to 60 mins 24/7. Our nurse and social worker continued to tell me it was time to let go and to start to plan funeral arrangements. I couldn’t accept it, just kept fighting, then one morning he just woke up. He still to this day hasn’t been the same. He gets sick often, pneumonia is like his common cold. His body temp still remains very low. His normal is about 94 degrees. We keep our house set at 70 degrees, and at night he sleeps under a heating blanket with winter hat and gloves on.


Sean now enjoys going to school during the spring and summer months. He loves music and books. He has a vision room which it this tiny room he lays in and it has high contrast toys and lights in it. His favorite thing in the world is Christmas bells. He is also a new big brother and he loves to listen to his brother’s noises. Sean is a typical boy who loves rough and tough play. He is happy, that’s what’s most important to me.



I know Sean isn’t confined to a text book description of how a Hydran baby should be. He is a baby with Hydran learning to live. He is happy and he loves his family dearly. I know his condition is unchanged and I could lose him at any moment in the day. But he is a FIGHTER, he urns to live and to love. I feel all mothers should live there life as if it was the last with their child. You would learn to take nothing for granted. Every smirk, laugh, look, touch, cry, smell, kick, whimper, blink would seem like a miracle each time. The bond you have with a child with Hydranencephaly will always remain UNREPLACEABLE and UNEXPLAINABLE. And each moment Sean tries to talk to me, and looks my way. My heart swells with happiness. That is nothing anyone should take for granted.



Death does not discriminate, it does not see age, nor race. I have learned through Sean that simple pleasures are big ones, he has taught me to be present in the life I live. Every second has beauty that shouldn’t be taken for granted. For you never really know what it means to live, till you live your life like you are dying.

Wednesday, February 8, 2012

Wordless Wednesday: We love our Tubies

It's Feeding Tube Awareness Week until the 11th... and we love our little ones AND their tubes ;)











Click the image above to go to the Feeding Tube Awareness Facebook page