Monday, September 29, 2014

Here's a GoFundMe request for a young man (with DS) named Garret "G-Money" Holeve from Florida who aspires to be a MMA fighter!!!  He's needing funding to travel to Missouri for his first fight, as the sanctioning body in FL hasn't allowed him to fight there. Please read and support him if you feel lead to. I think its great!

Friday, November 8, 2013

Clothing Designed For Folks With Down Syndrome And Others!

 Please take a look at the cleverly designed clothing for the special figures of folks with Down Syndrome (and others)!

Downs Designs:  Special clothes for Special People indeed!

Please use this link and enter to win a Gift Card for Downs Designs clothing: Downs Designs Gift Card

Our Darling Diona Will Need Surgery

I'm posting this here to alert other parents of children with DS of hidden and potentially devastating maladies that are being discovered as part of the "syndrome" Apparently, malformed joints is one to be aware of.

To Our Brothers and Sisters,

Today we took Diona to a Neurological/Spinal surgeon for evaluation.

This was a follow-up referral from an orthopedist who had seen her to determine if would be safe for her to participate in hippotherapy, as required by the sponsoring organization. During that visit, the orthopedist had discovered (thru MRI) what appeared to be an excessive gap (10mm instead of 3mm) in the joint where her skull meets her spine. 

Today, the N/S surgeon ordered a thin-slice CT scan to 3D model her actual cervical spine and spine to skull joint. This scan revealed a malformation of the 1st vertebra and subsequent erosion, resulting in the gap that the orthopedist had seen...And more.

For a simple explanation: The skull to spine joint is supposed to be like a "ball-and-socket" joint- The top of the 1st vertebra should be "bowl" shaped, to receive and retain the "ball" shaped bottom of the skull, allowing it to turn and pivot. However, the top of Diona's 1st vertebra is flat- allowing the skull to slide fore and aft, as well as side-to-side. Picture a ball on a flat surface, rather than in a containing cup. Only her muscles and ligaments have prevented extreme movement or dislocation.

The opening in her vertebrae that the spinal cord passes through is appx. 20mm in diameter. Her fore-and-aft movement of her skull can be about 12mm. Side-to-side movement is nearly 7mm left and 4mm right. Already an hourglass shaped indentation is visible in her spinal cord, from the pressure applied to it through this excessive/unrestrained skull movement. 

Some of you may have noticed Diona carrying her head with her chin lowered. This apparently is the result of the weakening of the ligaments in the skull-to-spine juncture, due to the stress of the excessive skull movement.

Currently, there is a very real danger of severe spinal cord injury or death from an impact to or severe force against Diona's head. 

Therefore, the surgeon has proposed to fuse Diona's skull and vertebrae (3pcs, if I recall) together with a stainless steel pin and thin cable to limit the excess movement. I'm getting more details on and the name of the procedure- It doesn't involve screws or plates and allows for more flexibility and growth. Following surgery, Diona would lose appx. 50% rotational (L-R) motion and 20% up-and-down movement of her head & neck. 

The surgeon has already successfully performed this procedure on several children. Its not without risk, as is expected with any spinal-area surgery.

To reduce the risk of injury to Diona until surgery, (and likely for some time afterward) she has been fitted with a cervical support collar that she will wear whenever she's not sleeping. 

As expected, she really didn't like us making her wear the collar, but she already seems to have adapted at least partially to it- She dragged Tehom all over Bass Pro Shops today, at a pace much faster than normal, wearing both of them out! (She's wasn't walking looking downward, like she's grown accustomed to.)

Looking towards that surgery, we've scheduled an appointment with Diona's cardiologist, for December 3rd, to ensure that he has no objection or reservations about anesthesia and surgery, (due to her heart murmur). If not, surgery is tentatively scheduled for the first Monday in January.

We're very grateful to our Father God for keeping watch over Diona and protecting her thus far. We're equally grateful that He directed the course of her life to reveal this grave situation to us. We're thankful to God for His mercy and lovingkindness and we're praying for His wisdom and direction in this matter. We would really appreciate your prayers on her behalf as well.

Thank you

Mitch & Tehom 

Thursday, June 13, 2013

Free Access Pass For Permanently Disabled Persons

Hello everyone! Thanks to my friends on the BushCraft USA forum, I've been made aware of the America the Beautiful National Parks and Federal Recreational Lands access pass, available for persons of all ages with permanent disabilities. Please follow this link for more information:

Enjoy the great outdoors!

Wednesday, February 27, 2013

DS Young Man's Death Investigated As Homicide

EDIT: Here's a follow-up story to the original from Fox News-

My heart is just breaking for Robert's parents & family.

Those of us with DS children know well how they "just love unconditionally" and its very difficult to understand how this situation unfolded.

I'm trying to imagine what Diona's response to security guards (strangers) would be if I had left her instructions to sit and wait for me to return (Yes- Huge assumption here). I think she would obey my last instructions and would resist anyone's attempt to force her to do otherwise. At 10-1/2 she's quite strong and capable of resistance - She wouldn't strike anyone, but in terror she would put up a mighty resistance. How much more might a 26 yr old man resist?

We pray for the Saylors to have the peace of God's presence and His grace to forgive and understand. And we weep with you.