Dear Jaden

Turning Two

Looking back at the last 2 years, I have been on a rollercoaster of emotions. When I first saw your sweet, new pink little face, I would have never guessed in a million years we would be here in just 2 short years.  I will never forget feeling in the pit of my stomach, knowing something was wrong. Looking back just days before all the appointments started, we were at the fair and a lady wanted to see our new you.  When she did, she blurted out “oh he’s cute, what’s wrong with his head.” My jaw hit the ground I am sure, we at the time made a joke of it, oh we all have big heads…. Never knowing that “joke” would turn out to be our forever reality.  It’s hard not to think about your shunt, is it working? Does it hurt you? Will it work tomorrow? It brings me to tears to think of the answers of hard questions you will ask me as to why? Sometimes, when you are having a bad day I am wishing I could take it away. Truth is I know I am not strong enough to be you, survive what you do and be as happy as you!

In a way I think life brings us to where we need to be and with the people who we need or may need us even more. Because of you I have learned so much about myself, you, your brother, dad, our family, hospitals, doctors, your body, your brain and sometimes total strangers it amazes me it has only been 2 years and at the same time it feel as if the future is charging front and center, faster than ever.

You inspire people everywhere we go, and people who meet you learn something new.  I want you to know that I am ever proud of you being 2! I believe in you more than you believe in yourself sometimes and even when it is unbearable, just keep trying. You can do it. Mommy, Daddy and Big Brother love you.

Happy Birthday Big Boy!



Jaden, 2 and Daddy



News Paper Article, 4/9/2012

This is the article about Jaden in the news paper. Very proud of Jaden, we are happy to be along on his journey. We are very blessed as parents; our son’s are growing into amazing young men.

Jaden Brown, the infant son of Christina and Roy Brown of Durango, has been chosen the Face of Hydrocephalus Awareness for 2012 by the national Pediatric Hydrocephalus Foundation.

Hydrocephalus is an incurable condition in which excessive spinal fluid gathers in the brain, placing potentially damaging pressure on tissues.

Jaden, who will be 2 on April 26, was the subject of a story in The Durango Herald on March 13, 2011, about his mother’s effort to form a support group for people with hydrocephalus. Jaden has a shunt in his head to drain spinal fluid.

Jaden will be the boy featured in promotions for National Hydrocephalus Awareness Month in September. Mackenzie Holcomb, an 11-year-old girl from Ohio, will be the featured girl.

“We’re happy to be part of this recognition,” Christina Brown said Friday. “It’s so cool.”

Jaden’s designation as the face of hydrocephalus carried a $500 stipend, which the family is going to donate to Children’s Hospital in Denver for research, Brown said.

Hydrocephalus occurs about once every 500 births.

The Pediatric Hydrocephalus Foundation is an all-volunteer nonprofit that works to raise awareness about the malady, promotes research and serves as an advocate for the hydrocephalus community.

Follow this link to the Durango Herald's site:

http://www.durangoherald.com/article/20120409/COLUMNISTS41/704099949/Talk-About-Town

Sometimes Unspoken

Found this amazing read and wanted to share it with everyone.

http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html 

Introducing The National Face of Hydrocephalus Awareness 2012

Making us so proud, Go Team Jaden!

The PHF is proud to present the winner and now the National Face of Hydrocephalus Awareness 2012, Jaden Brown:


Jaden was born in April 2010, unknowingly as a healthy child with no known health issues at birth. Jaden’s head started to grow at a rapid rate around 4 month of age. My older son has a “large head” and has had an MRI to confirm that there is no medical condition. So at Jaden’s 4 month well check- we all didn’t think much of his “big head”. When his head continued to grow our doctor recommended he have an ultrasound which, then lead us to an MRI and neurosurgery consultation. Because of where we live in Southwest Colorado, we have to travel to Colorado Children’s Hospital for specialty treatment which is about 350 miles from where we live. During the first visit with Jaden’s Neurosurgeon, we learned about the large amount of extra-axial fluid on his brain and that Jaden had also suffered a stroke.
He has a large amount of brain damage affecting the left side of his brain and right side of his body. Jaden’s diagnosis is Hydrocephalus, infant Stroke, Cerebral Palsy and a vision condition called Cortical Vision Impairment. Jaden had his Shunt placed in 10-2010. Knock on wood his one and only shunt is working well and his MRI’s show a lot of improvement fluid wise. Jaden works hard with physical therapy, occupational therapy and speech therapy. He is little to no use of the right side of his body and is developmentally delayed. His movement is = to a 6 month old, and cognitive = to a 12 month old.
Yet he is full of personality, strength and joy. It is amazing how many people’s lives he has impacted in his small years- his future is bright to say the least. Jaden has something in his smile that lights up a room. He enjoys working on therapy with his iPad, playing cars with his brother and laughing with his family
~ Jaden’s Mom Christina

http://www.hydrocephaluskids.org/

The Colorado Pediatric Stroke Parent Support Group: About Jaden

Family Spotlight in the CPSPSG news letter 2/2012

Jaden,

Being the parent of a special needs

child is very challenging and has proven

to be the most emotional experience in

my life so far. Some days are good while

others are harder, making me ask a

question I will never know the answer

to- why did this happen to my child? It

is important to take into consideration

the effect that having a child who is a

stroke survivor has not only on my son

Jaden, but also on our family, friends

and everyone we meet. People tell me I

am the strongest person they have ever

met, and while this is an amazing

compliment, I can’t help but think that it

is Jaden who is strong, not me.

The hope I see in Jaden and the

inspiration he gives others has led me

to raise awareness about

infant/childhood stroke. The impact of

Jaden’s stroke has been life-changing

for our family and other like us who

have had a child diagnosed with stroke.

However, through it all we have found

strength and remain thankful in

knowing that Jaden and others like him

will achieve success and believing in him

even when he may not believe in

himself. Jaden has shown us to cherish

the small things -- sitting up, tying our

shoes, clapping our hands and what it

means to have a life free of occupational

therapy, physical therapy and

speech therapy.

My son has changed people’s idea of

what it means to have the diagnosis

stroke. He has inspired me to encourage

people to speak openly about

medical conditions and meet with

members of the community to share

our story, spread information and help

patients and their families cope with this

life changing diagnosis, the diagnosis of

childhood stroke.

Please visit our blog website or e-mail

me directly if you have questions or

would like to connect.

www.jadenstory.blogspot.com

Christina Brown

E-mail:

christinaandroy@yahoo.com

Colorado HealthStory

Here is Jaden’s health story that I recorded for Colorado HealthStory. I am always looking to share our story and bring awareness to the issues that affect our lives and the lives of so many people.  

I very much enjoyed working with Joe and being a part of Colorado HealthStory.

Love and Health,

Micah and Jaden’s Mommy

Please follow the links provided to have a listen and feel free to share.

Our Health Story

http://coloradohealthstory.org/1366/christina-and-jaden/

Colorado Coalition for the Medically Underserved

http://www.ccmu.org

End of Summer 2011

Practice What You Preach

Jaden 16 months
Hydrocephalus and Stroke Survivor

This is hard to say, summer is coming to a rapid close faster than any of us would like. Before we know it there will be turkey in the oven and football on the tube. Because this is National Hydrocephalus Awareness Month I wanted to give an update on our little man. There will surely be randomness, humor and truth.

            The Jaden Bear



Micah 5 years

This little man of ours just keeps working hard to overcome any challenges in his life. We have been to Denver to Children’s Hospital twice this summer for checkups. The new MRI shows an amazing difference in the reduction of fluid on his brain, which is so much better than we could have hoped for. Jaden can now sit unsupported and play on the floor, without mommy freaking out about him free falling backwards and hitting his shunt. Jaden has also learned he can roll all around the house. When he first started he could only roll one way, pushing off with his good hand and over the stroke affected side, becoming stuck when he would roll into the couch or wall. Now he is able to push with his legs and scoot around until he can keep the rolling going! He is also working on sitting and scooting around the floor. We have been working on our standing skills and he is able to stand with support in front of the couch for about 2 or 3 minutes. As far as talking goes, I think it is the most amazing sound to hear him say MaMa or DaDa! He can say about 6-8 words and tons of babbling. We have also learned how to peek-a-boo, my goal is to have him use both hands, but right now he just uses his “good” hand, good hand or not I am just happy he can do it! We have almost made it one year surgery free, which is a milestone I pray we get to cross and add to. We had a visit from our vision therapist from Denver and she tested Jaden’s eyes again. He is 20/180 in his right eye. We also believe he may have slice or field or area in his right eye where he is unable to see from. So he tries to lean his head side to side to see around the slice.

Borderline

With Micah starting kindergarten this year, I have seen firsthand just how harsh and critical other parents are. I am not quite sure; maybe I am missing something here. I believe we all share common goals wealth, health, education and yeah this one blows me away everyday- fairness. I believe we are parents, regardless of medical diagnosis, looks and life choices we are so critical of each other. Acceptance is something we try to teach and preach, yet when it comes down to it we lead by example and that example is to be critical of different than and I use this loosely “normal”.  I am very proud of my son for being so caring to a little boy who is in his class and has some muscle tone issues and even when this little boy could not control his legs and knocked my son over, Micah just said its OK, sometimes your legs wobble. Very proud of my son and accepting someone for whom they are and being his friend no matter what. I wish adults would take his advice and be more accepting of others by not judging other peoples situations. There is such a hush of quite that keeps disability and medical issues off conversation, people skirt around me for fear of asking the wrong question. We have accepted our life and it is OK to bring these issues to light and ask questions, become educated about something new. It is OK to ask, there is no right or wrong question. Just be open!

Medical

Left Picture 10-13-10 White area is fluid.
Right 6-15-11 Looking Amazing!

For the most part Jaden has been doing very well, making small but steady progress with physical therapy and occupational therapy, learning new things and overall doing amazing! We had placed an application to Shriner’s Hospital for orthopedic care and we found out today we have been accepted. This is huge news for our family! Shriner’s is amazing because they take Jaden on and regardless of our income, insurance or pretty much any other factor Jaden will have orthopedic care and muscle rehabilitation services until he turns 18. I feel so happy that we have been blessed to have this gift of wonderful care given to us. We will have to travel back and forth to Salt Lake City Utah for care, but the care and potential it offers Jaden is worth it 100 times over! We will still be making trips back to Denver every 6 months for follows ups with Neurosurgery, Neurology, Audiology and Muscle Rehab there as well.

Just Thankful

It is sometimes hard to see Jaden struggle so much to do things that come with such ease and are such gifts to other children, including Micah. Things that until I had Jaden I had taken for granted myself. I can not help but think of how glad I am for parents who never have to feel such struggle for their children. Things in life we take for granted, holding a cup, clapping our hands simple things overall. I know he can do whatever he wants to do in life, I believe in him so much more than he may believe in himself. Micah is such a good teacher and motivator for Jaden because Jaden wants to be doing what brother is doing. When I have a bad day or feel down, I keep myself in check by thinking about Jaden. How hard it must be to be stuck in a body that only half works. I think about other parents who have children who have much more complicated medical issues than Jaden. What it comes down to is that I am so very thankful for all he is able to do and all the things I know he will be able to learn how to do. I am thankful for each day with my children because it is a gift not an expectation. I also feel so much closer to parents who struggle daily with much harder situations than ours. I am apprehensive of the challenges we face and encouraged by the shear courage and strength of my kids.  

Love and Health,

Micah and Jaden's Mommy