May 30, 2012

Ducks for Bucks June 2nd....Get Your Duck

The video of this poem is a must watch....The poem written by my aunt Donna Maser in honor of our Daughter Breann Chavez. It captured the emotional struggle that my husband and I went through after our daughter was diagnosed with Niemann-Pick Disease. It is dedicated to all families who are still in this fight. Sadly Breann passed away in June of 2006 at the age of 3.

Jami and Lisa, parents of Breann, started a duck race to raise money for NPC in Memory of Breann.  The race is June 2nd 2012 so there is not much time to get your DUCK!! You don't have to be present to win. The ducks are $5 ($1000 prize) or you can just make a donation!!

Tylor bought a bug duck (pictured at the top), since we call him Ty Bug.  They have all different kinds of ducks...check it out at Bucks for Ducks and get your DUCK!!!!

Road to Discovery, Dean Greg Crawford's Blog

We had the pleasure of meeting Greg Crawford, the Dean of Science at Notre Dame.  He is an awesome man doing a great thing for the NNPDF community.  For the last two years he has biked all over America to raise awareness for NPC and this year he is biking from Boston, MA to Pebble Beach, CA.  He left May 21 and plans on arriving in Pebble Beach June 22....amazing huh?  He will be arriving in time for the Ara Parseghian, a form ND football coach who lost three grandchildren from this disease, golf tournament to raise money for NPC.

He has been blogging about his journey and I thought some of you might what to take a look!!


Day 9: Holiday City, OH, to Notre Dame! 

Today was a terrific day for riding and reaching home for a visit. Peter, a math professor from Notre Dame, and Tom, a friend from Knollwood Country Club, joined us on the sunny, breezy ride from northwestern Ohio.

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The Ride Schedule

Date Arriving
5/21/2012         From Boston, MA to Sturbridge, MA (75 miles)
5/22/2012 Lakeville, CT (100 miles)
5/23/2012 Walton, NY (130 miles)
5/24/2012 Corning, NY (125 miles)
5/25/2012 Salamanca NY (105 miles)
5/26/2012 Meadville, PA (100 miles)
5/27/2012 Elyra, OH (100 miles)
5/28/2012 Bowling Green, OH/Montpelier, OH (100 miles)
5/29/2012 Granger, IN (95 miles)
5/30/2012 Matteson, IL (100 miles)
5/31/2012 Mendota, IL (100 miles)
6/1/2012 Davenport, IA (85 miles)
6/2/2012 Oscaloosa, IA (125 miles)
6/3/2012 Creston, IA (110 miles)
6/4/2012 Bellevue, NE (96 miles)
6/5/2012 York, NE (110 miles)
6/6/2012 Holdredge, NE (120 miles)
6/7/2012 McCook, NE (80 miles)
6/8/2012 Yuma, CO (100 miles)
6/9/2012 Byers, CO/Denver,CO (100 miles)
6/10/2012 Denver, CO – ND Club Tour
6/11/2012 Granby, CO (95 miles)
6/12/2012 Craig, CO (120 miles)
6/13/2012 Rangely, CO (90 miles)
6/14/2012 Altamont, UT (95 miles)
6/15/2012 Park City, UT (90 miles)
6/16/2012 Wendover, NV (160 miles)
6/17/2012 Ely, NV (120 miles)
6/18/2012 Fallon, NV (100 miles)
6/19/2012 South Lake Tahoe, NV (100 miles)
6/20/2012 Elk Grove, CA (100 miles)
6/21/2012 Livermore, CA (100 miles)
6/22/2012 Monterey/Pebble Beach CA (100 miles)

May 20, 2012

Therapy Update

Well Tylor finally went back to physical therapy around the first part of April...he was off since December.  The reason for the break was that he was meeting all his goals and we couldn't come up with any that were appropriate for him.  So Jaime thought it would be best to discontinue therapy for a bit and in the spring come back for a revaluation.

During the revaluation she noticed only slight decline but it definitely warranted a return to PT once a week.  There was some more toe dragging while walking and posture concerns.  She had me set up an appointment to get him fitted for new AFOs.  His AFOs now are over a year old and he had out grown them. The new AFOs will have more limitations on how he can move his ankle so he won't be able to drag his toe as much.

He was also seen by the wheelchair rep.  He is also growing out of his wheelchair so he will need new parts for that as well.  He will keep the same base but he will get new arm rests because he is using them more and we don't want him to get sores on his arms.  He will also be getting a different lap belt but instead of a belt it will be a bar.  This way he can't take it off and his position will be the same every time he is in the chair.  There are so many people taking Ty in and out of his wheelchair that there is no consistency on the correct position he should be in.  He sit will be moved out to compensate for his leg growth and the chair will be raised up an inch from the base for better clearance.  He will also add foot straps because he tends to stick his feet out and we don't want his foot to get hurt going through doorways or in and out of the van.

It has been a bit of a struggle for him to get back into a routine with physical therapy but he does a little better every week.  And as for OT he is doing so good that we have gone down to once every other week.

Reach Ty reach

Getting ready to cast the new AFOs

Cutting open the first one

Look how skinning his leg is...

Doing therapy at home...

We are so ready for school to be out!!

Tylor is so ready for summer vacation along with myself...yes I am ready too!!  We have a full summer planned which involves a lot of camping, swimming, camp at Camp Albrecht Acres, a vacation to Nashville and some therapy in between.  Gotta keep the little (I mean Big) guy strong for the summer.

But who said we had to wait for school to be out to officially start the camping season!!  We have been out twice and were suppose to go this weekend but Sy had to work.  And of course we will be ready for the three day Memorial weekend coming up!

In past years Tylor would end up in the camper when it was buggy out...he hates bugs flying around but hey who doesn't?  So this year I came up with a plan...we have a blow up couch for him to lay on and I bought a bug net that fits over the couch.  It is a slick setup and Tylor loves it. This way he can enjoy the fresh air all day. 

Last weekend when we camped we took Blake and Tylor fishing and guess what we caught.....a dog  No not a dog fish a real dog and of course it was our dog, Josie.  When Ty was reeling in his line Josie went after the worm and got hooked on her bottom lip.  I was so freaked out that Tracy, my friend, had to get it out. 

It was a great relaxing weekend for all of us.  We are looking forward to many more this summer.  Enjoy the pictures!

Sleeping in Saturday morning

A tree frog camped out on our electrical box

Blake playing with our spare tire that blow out.

Ty's bug net...wait can you see the big bug in there??

Blake showing Tylor our worms for fishing

He loves to reel the line back in.

Ty was eating cheese balls...look at the drool coming from Josie's mouth.

Special Olympics Challenge Day

The Hills and Dales group was the largest group there.

Special Olympics Challenge Day was help at the Loras College wellness center.  This was Tylor's four year of participating in this all day event.  There are some many challenges for the athletes to compete in like dice bowling, bean bag toss, soccer, basketball, volleyball, ramp bowling, hitting a baseball, and many more.  They also serve lunch for everyone and it is one of Ty's favorites Mac n Cheese, cookies, and pudding!

Sy was his volunteer this year so I could take pictures.  We all had a great time and Tylor got to see friends from last year and even some from Hempstead.

Ty and Sy warming up to YMCA

Look at him kick that ball!

Tylor's door hanging he did a great job making it.

My little Devil

I got it!

He worked so hard it was time for some Z's

He received 5 ribbons that day....Way to Go Tylor