Dylan

 

spacer Dylan's Journey: A little boy's quest for sight and mobility

      Dylan's YouTube Video
 

My mom & dad say that I am their little miracle. Did you know that you and everyone who is helping me is actually a big part of making my miracle come true?  It is because of you that I keep making INCREDIBLE progress.

I was born December 16, 2004 and because the cord was around my neck, I was not breathing at birth...  But, I was given a second chance at an incredible life when I took my first breath.  My parents did not know what this lack of oxygen during my delivery would ultimately mean to me, but they would learn very quickly about the severe injury to my brain. When I was 4 months old, they were told that I was blind and had multiple health challenges. About a year later, they were told I had Cerebral Palsy and may never walk.  This is where our incredible journey begins...  (Read more about my story here...)

~ BREAKING NEWS ~

  YouTube  
Dylan's Journey - A Story of Hope

Dylan's Fathers Day Card to His Amazing Father

(listen to the music when you watch the video)

June 16, 2012  

 

dear dad, thank you for your unconditional love, support, teachings and hugs. 

thank you for picking me up when i need you because i can't do it myself.

thank you for picking me up just to spin me on your shoulders because

i crave the vestibular input to gain the balance i need to walk

and that is a quick way for me to get it when my body tells me i need it.  

thank you for always making me feel like i am loved and accepted,

just the way i am...

you are the most amazing father and i love you...

dylan (aka tigger & zippy)


Great News from Mom & Dad:  To everyone who has been a part of our Journey with Dylan, and many of you who came to our house to help us 'pattern' with Dylan at one time or another, in hopes that we could get him cross-crawling...  we are very happy to announce that Dylan has started cross-crawling in the last month (July 2012), and now cross-crawls almost every where he goes.  In fact, it is often hard to catch him when he sets his mind to getting somewhere.

You may ask, why is the cross-crawling so important to us?  As Dylan's parents, we have spent the last 6 years learning as much as we could about how a child develops.  We know that we have to teach Dylan those development steps.  Cross-crawling is VERY IMPORTANT to the development of vision (convergence of vision), and also gaining access to higher brain function.

So, this month we celebrate a HUGE milestone in Dylan's life - cross-crawling


Dylan's Documentary Update

Sam Tuttle will be coming to Bend, Oregon and filming the last part of her Documentary on Dylan the weekend of August 4, 2012. 

Dylan's Documentary.

DYLAN a short Documentary  

 

You can follow her on facebook with this project at: 

FACEBOOK - DYLAN A SHORT DOCUMENTARY 


QUESTIONS about anything on this website or

to find out more about what we are doing with Dylan, or if you want to know

where to go for Hyperbaric Oxygen Treatments in Bend, Oregon?

Please contact Jinger at (541) 754-7177

PREVIOUS UPDATES

     
Dylan's KEZI News Story
 

Hyperbaric Oxygen Chamber

at Bend Hyperbarics

Dylan on the KEZI 9 News - May 21, 2010

(The video portion of this news story is no longer on the KEZI website,

but you can read the story at the above link)

Update in Sunday, May 16, 2010 Corvallis Gazette-Times


Visit the link below for my mom's letter/blog to me - 5 months after

I received my own cord blood stem cells at Duke University,

and 2 months after I started Hyperbaric Oxygen Treatments

at Bend Memorial Clinic (Thank you Dr. Pinnick):

Dear Dylan...  October 26, 2009

2009

March 2009: I was accepted into a study at Duke University for children with Cerebral Palsy, where I will get an infusion of my own cord blood stem cells (my parents banked my cord blood when I was born -- how cool is that!). I am so excited about the possibilities. I leave for Duke University on May 23, 2009 and with faith, hope and prayers, my parents are optimistic this will help me to get started down the road to healing.  Do you want to know what I am hoping for?  I am hoping for improved vision, the ability to talk, and to learn to walk.  Did you know I am 4 years old now?  Can you imagine how much I have to say, and how cool it will be to run with my classmates on the playground?? 

Sept 15, 2009:  My re-infusion was on Tuesday, May 26, 2009.  WithinDylan Sept 2009   6 weeks of getting my new stem cells, I started talking and responding when my mom and dad would ask me questions.  It has now been about  3 1/2 months and it seems like a lot of things are changing for me.  You can see above that I was hoping for improved vision, the ability to talk, and to learn to walk...   Well, it does seem that my vision is changing and I am holding my hand close to my face and seeing it with my right eye now.  Mom says that I get all 'giddy' when I can see my hand in front of my nose.  And yes..., the stem cells seemed to have helped me with my talking.  I gain new words every day, but right now my favorites are Eeyore, Tigger and Ball Pit.  About that walking I was wishing for??  Well, my right leg was pretty spastic and I had a hard time making it step correctly, but since my stem cells, with my Mom & Dad's assistance, I am making better steps and my right leg/foot is coming through much straighter.  I don't seem to drag it through anymore.  Pretty cool stuff, don't you think??  

Sept 27, 2009:  This month has been a whirlwind for me and my parents.  We went to Bend in early September to stary my Hyperbaric Oxygen Treatments at Bend Memorial Clinic, and after only 2 treatments, it was decided that I needed to get ear tubes put in place in order to help me clear my ears of the pressure when we were descending down to depth.  So, we returned to Corvallis, made an appointment with the ENT (Ear, Nose & Throat) doctor and I had ear tubes put in.  We then returned to Bend on Monday, Sept 21, and started the Hyperbaric Oxygen Treatments again.  The 1st two were a little rocky, but it has been pretty smooth sailing since then.

Nov 1, 2009: I have now completed 30 Hyperbaric Oxygen Treatments.  About 2 weeks ago I started to talk a little more and started answering questions asked by others.  I am responding more often with the appropriate responses when people talk to me.  I have learned to drink from a straw (something my mom and dad were trying to teach me for months) and I just understand more of what is going on around me. Mom & Dad think the HBO treatments are definitely making a difference.  In addition to the Hyperbaric Oxygen Treatments, I am also doing speech therapy and physical therapy (including HIPPO therapy -- horseback riding to help build my core strength).  We live at the Ronald McDonald House in Bend during the week and often go home on the weekends.   The RMH House is very close to the clinic where we get HBO treatments, and also walking distance to my speech therapy.  It is very centrally located, and the RMH is awesome. We have never stayed in a RMH before, but it has been wonderful and has become our second home.

Dylan the Doctor  "Doctor Tigger"

About my talking...  a few weeks ago I changed my name to "Tigger" and when people call me Dylan, I always correct them and say,  "I Tigger", and then I usually smile.  My favorite words now are "Tigger, House, Doctor & Cleo (my dad's friends dog)". 

I really like my Doctor's (the one in Corvallis & the one here in Bend) so I was excited that  I got to be a Doctor for Halloween.  When asked what I want to be when I grow up -- you guessed it -- "Doctor" (or sometimes I may surprise you and say "Tigger).

2010

Mom & Dylan in the Hyperbaric Oxygen ChamberFebruary 24, 2010: (Facebook note from Mom) We have done 100 Hyperbaric Oxygen Treatments at Bend Memorial Clinic as of today!! This last week Dylan has taken a big jump with his talking and responding to our questions, and in the last week he is learning to count (we say "one", he says "two"... we say "three, four, five" and he says "six") Pretty amazing progress for our little guy!

Dylan, how old are you? He says "Five"!

 

March 2010:  I completed 120 hyperbaric oxygen treatments anHyperbaric Oxygen Treatments with Dadd everyone around me can see the huge changes in my cognitive abilities and understanding and speech. My teacher at school is amazed weekly at my progress.  I continue to say new words and if you ask me, "Dylan, what do you want to be when you grow up", I will always answer "A Doctor".  The last few Hyperbaric oxygen treatments I watched 'Finding Nemo' (that is actually the Eagles in Concert on the TV you see in the picture -- that was my favorite thing to watch).  Because of watching Nemo, now when you ask me what my nickname is, I will say "OOH, AHH" or "Sharkbait".

Mom's Note:  Today, March 25, 2010 was both triumphant and sad for us.  Dylan completed 120 Hyperbaric Oxygen Treatments & we said goodbye to some pretty incredible medical professionals. Dylan can now ask for what he wants & he responds when we ask him questions. His speech & cognitive gains are nothing short of amazing. Thank you Bend Memorial Clinic for taking great care of Dylan..., and joining us, as Dylan continues to teach all of us the true meaning of love & acceptance.

Getting Ready to Ski with Mitch and Kendall

April 4, 2010:  Easter Sunday ~ One of my favorite technicians at Bend Memorial Clinic (where I completed my Hyperbaric Oxygen treatments) took me adaptive sComing down the mountain - you can't see my smile but it is therekiing on Easter.  They bundled me up and took me up to my first ever trip on the mountain.  The smile never left my face as Kendall and Mitch took me in the chair lift and skied with me down the mountain.   It was a little cold, but it was the greatest feeling and felt like I was flying.

 

As part of my amazing journey, my mom writes letters to me and posts them on my blog. In all this going back and forth to my out of town doctor appointments, therapy and treatments, my mom has missplaced the password to the blog.   She still writes the letters, they just aren't actually posting right now.  She has been writing a comprehensive update letter to me on the monthly anniversary of my stem cells.  The letter below was written on my 5 month anniversary, October 26, 2009.

Dear Dylan...  October 26, 2009

 

Did you know that you, and alot of other amazing people have made all this possible for me?  It is pretty hard to say an appropriate Thank You for what hundreds of people, many of who I don't know, have done to help me have a better future.  It isn't much, but THANK YOU.  When you see me and you see me smile (which I do most of the time), that is my incredible gratitude for your encouragement, prayers and support.  

      Please Donate
 

If you want to learn more about my infectious spirit and determination or join those who have committed time, energy, prayers, and/or financial resources in my quest for healing, speech, sight & mobility, please contact my parents or go to How Can I Help?

 

There is just one more thing that I wanted... 

I really wanted to say "Thank You" for joining me on my journey...

 


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