Thursday, April 16, 2015

Update: Spinal Claudication

As many of you know, it has been a long and difficult year for my son and I. We are visiting with family in southern Illinois, while I recover from an incident which happened last year.  For now, I ask that you take the time to reread some of the stories I've blogged in the past.  They are definitely worth the reread!20140721_165520
To update you on Jax: He is doing well and as active as ever. His brain stem injury is healing very nicely, soon, it will be just a tiny scar. New issues arose with him as he complained of pain in his legs and back. Physical therapy took care of the back, but the legs needed attention. He was diagnosed with spinal claudication. This is very different than the average stature version. You see, when you exercise, your blood vessels expand. Those with Achondroplasia have much less room in their spinal canal than we do, but their blood vessels are the same width. So exerting himself causes them to expand and press on the nerves which lead to the legs. Once he rests, they shrink and he is symptom free again. No damage is done.  About 85-95% of Achons have claudication. In other words, for him this is normal. We are learning ways to help him adjust to this, and  minimize any pain or weakness.
For me, this was very good news. No new or unusual problems...just normal LP stuff! We do ask for your prayers as I get back on my feet and help him learn to live with this new change in his body. Visit me on Twitter @Jenovesia for updates and photos.
Thanks to all! Your loyalty and support means so much!  
I encourage you all to visit my main blog: dwarfaware.wordpress.com
Find me on Facebook, G+, and LinkedIn.

Thursday, December 19, 2013

I'm in the mood for missing...

I am sitting here at the scrapbook table; well, today it is a scrapbook table, yesterday it was filled with bills, tomorrow...who knows. But for today, it is a table covered in memories across a collage of patterned paper. All of those little eyes looking at me. How thankful I am for every one of those moments. Grateful, too, that I can remember them all. Out of all of them, one stands out. The man who gave me this child. In the photo, he is lying next to him, our son, who is cradled in his arms. Something collides in my mind as a tear and a smile emerge simultaneously. So many days I have wished to call him back from where ever it is he has landed. I know that is an impossibility. After a certain amount of time, you would think that would sink in, but my brain can be as stubborn as my heart. My fingertips graze across the mass of photos, the years of minutes and seconds strewn together, and I wonder if he saw any of them. Could he have, or did they escape him? My smile is sympathetic as I think of the futures he will miss. That our boy will miss without his daddy. There is no way for me to write to him, speak to him, or record those times to send to him. He may or may not see them. But to one little boy, he will notice the vacancy. Though I wonder if someday, he won't anymore. Someday, he will not see the empty space that I do. He is so young, and it has already confused me how easy this has been for him. Don't misunderstand, many times, I can see a look on his face which only comes from missing someone. Children have a way of shielding themselves from that type f pain. They are able to laugh again, moments after crying. Sometimes, instead of crying. I choose this photo to lay on the page. A moment to be celebrated--a moment to be mourned. It lays alone, on an empty page. I imagine it will for sometime.  Christmas is the time when all of those memories come flooding back-good and bad. I close the scrapbook, suddenly, I am not in the mood to craft. I'm just in the mood for missing.




Sunday, May 26, 2013

Stories From Around The Web

Stories From Around The Web:

In anticipation of the upcoming World Dwarf Games to be hosted here in the USA this year, I gathered some featured stories on athletes with dwarfism. Don't forget to follow all of the wonderful writers and photographers. To read complete stories, click on the links below. Enjoy!

Swartz Creek Student With Dwarfism Has The Heart Of Someone 10-Foot Tall [VIDEO]

By Rod Prahin

"15-year old Tristan Heinz from Swartz Creek has dwarfism, but it’s not stopping him from making a big impact on his teammates. . The coaches all worked together to make something very special happen for Tristan."
 http://wcrz.com/swartz-creek-student-with-dwarfism-has-the-heart-of-someone-10-foot-tall-video/



May 5, 2013

"ROWVILLE athlete Nathan Stewart is intensifying his training in preparation for the 6th World Dwarf Games in August. With almost 30 other people, Stewart, 22, will travel to the US to represent Australia...."

http://www.sspa.org.au/?p=1707


Freshman Josh Winsper provides memorable day at Old Rochester track

Youngster gives inspirational performance in season finale


Purchase this photo of Josh Winsper from this link.

Adam K. Ellis - Wicked Local photo
MATTAPOISETT —
"In nearly every way, Josh Winsper is your typical 15-year-old boy. He texts, he tweets. He even sacrifices sleep to watch playoff Bruins games.
He just does it all from a different point of view."

Swimmer Ellie Simmonds Picks Up Her OBE
 
"ELLIE Simmonds said she felt amazing as she picked up her OBE for services to sport.
The 18-year-old from Walsall was presented with the OBE by the Prince of Wales."


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Ellie Simmonds who has picked up an OBE
 

 
 
Giant Spirit: Nothing Slows Down Tiny Xzavier Ervin
Written by  John Carlson
 
Little boy with giant spirit

Little boy with giant spirit: Xzavier Ervin, nearly 4 years old, has osteogenesis imperfecta, commonly referred to as brittle bone disease. The youngster from Royerton has had at least 70 broken bones and eight surgeries.  See the VIDEO.
 

"EATON — Approaching 4 years of age, Xzavier Ervin weighs a mere 22 pounds, but there’s not a single ounce of quit in his tiny body."

 

Sunday, May 5, 2013

Common Ground: Human Side of Shock Radio by Gary Arnold

Common Ground: Human side of shock radio: On September 11, 2001, I was on the train commuting to work when the planes crashed into the Twin Towers.  I didn't have a cell phone th...

Wednesday, April 24, 2013

Beyond Money: A Look at Giving: Do You Have a Flexible, Free & Focused Giving Plan...

This is an amazing amount of knowledge in a few sentences, a must read!

Beyond Money: A Look at Giving: Do You Have a Flexible, Free & Focused Giving Plan...: If you are not on mission, have purpose and are strategic about your giving, then you will feel overwhelmed by all of the...

Friday, April 19, 2013

Ironman Efforts 

My name is Eric Potter from Huntsville, Alabama and I have become so passionate about my favorite charity that I have decided to race in an Ironman Triathlon (140.6 miles) to raise money and awareness of the great cause that they are working towards. My favorite charity is the Dwarf Athletic Association of America (DAAA). I became passionate about this charity shortly after my son, Brett, was born 5 ½ years ago and diagnosed with a form of Dwarfism.
Read this incredible story at : http://www.daaa.org/DAAA_ironman.html