NASHVILLE

Where did the summer go??  Tylor had a fun filled summer but it just went by way too fast.  To end summer vacation we went to Nashville for the National Niemann Pick family conference.  This year marks the 20th anniversary for the foundation so it was an extra special time for all of us involved especially for those who started this wonderful foundation.

It was a great weekend but a little overwhelming.  There was a lot of information about the up coming Cyclodextrin trial at the NIH and some other great research going on in different labs around the country.  They were hoping to get the trial up and going by the end of this year but it looks like it will start in the fall of 2013.  I am not sure if Tylor would be eligible for the trial because they are not completely done talking with the FDA on all the specifics. But I am still up in the air about getting Tylor in the trial so as information emerges I will pass it on and let you all know what we have decided.

Outside of receiving all the great information we were able to spend some time with old friends and met a lot of new families.  I always love getting together with my NPC family because they know what we are going through and they are so supportive.

Here are some pictures

Taking a nap after swimming

Karen Quant introducing the doctors & researches involved with the NPC community

The children that where taken from us too early last year

Ty at the Rain Forest Cafe

Throwing money into the fountain.  All the money was donated to NNPDF

The Moms at Hooters!! Tylor got a shirt signed by all the girls there.

We got to see some ND friends there as well.

We had a western theme this year and the kids loved the cowboy hats

Mom, Ty, and Kim dancing

The Moms are getting down.

3 Down and only 1 to go...

It's so hard to believe that camp is coming to a close.  He will go for his last weekend on Friday!  We have met so many amazing people again this year that has made Ty's camp experience unforgettable.  They love him so much out there.  It is hard to leave.  I actually was crying as I drove away on Sunday.  It is so awesome to see him having so much fun and smiling the whole way home.  This place is such a great organization for people with special needs.  It has been a blessing to our family and we have made life long relationships with so many people. 

Here are some pictures that were taken over the few weeks he was there.  There is no denying he had a blast!!

Ty and Cassi

Ty and Kristina

Got a little Cowboy in ya!!

Saddle up partner

A little water time with Cassi

Ty loves blowing bubbles

Dancing with the girls image that!  You hotdog Ty

Check out his cool shades

Look closely at Kristina's face...it says I Love Tylor

Surrounded by girls again

Art and craft time

His bear has to go with him too

Look at that smile

Push American guys. If you haven't heard about them. Check them out...they are doing some great work for special needs camps across America.

Let's Ride...

3rd ANNUAL RYDE 4 TYLOR

AUGUST 11th 2012

SIGN UP AT KNICKER'S 10:30-NOON

$10 PER PERSON

KICKSTANDS UP AT NOON SHARP!

1st Stop - Buenie, IA "Hank's"

2nd Stop - Guttenberg, IA "Damn Bar"

3rd Stop - Petersberg, IA "The Detour"

4th Stop - Farley, IA "Dirty Ernie's"

Last Stop - Dubuque, IA "Knicker's"

There will be 50/50 Drawings through out the day.

Koozies and bracelets for sale

Dinner will be from 6:00 to 7:30 at Knicker's

$3 donation 

Please come out and support the fight against Niemann Pick Type C!!  Cars and trucks also welcome!! Please pass the word and we look forward to a great ride and raising awareness about this horrible disease!!

Here's to you Rich

Tylor received a very special package in the mail the other day from his favorite camp counselor last year, Rich.  He sent him chocolate and some strawberry milk shake stuff (which Tylor loved!!).  Along with the goodies was a letter and in it told Tylor to nag me to update his blog.  I know I have been very bad lately about updating his blog...but the summer has just been so busy.  So here goes....

I can honestly tell you that Tylor looks and is better than he has been in a while, not that he was horrible before but WOW he is doing fantastic! It is hard to believe that two of his three weeks of camp are already over.  He has had so much fun, like every year.  He has been fishing, dancing, swimming, flirting with girls, doing arts and crafts and playing games while at camp this year. Last week he won the Biggest Ladies Man award...can you believe that??  He will be off to camp again this Friday till next Friday.  It is so weird not having him home.  At the beginning it is nice to be able to run errands after work and not have to worry about time running short but after two days I want him home but I know this is so good for Ty.  He loves spending time with his camp buddies and everyone out there loves him! I have been sending a camera with him so once I get the pictures I will post them.

On the not so fun side of things for Tylor is he got his new AFO's (ankle braces) on Monday.  Boy was therapy on Tuesday a struggle.  Because of my work schedule I can't take Ty to therapy so his nurse takes him. But she said he had to do a lot of walking. The new AFO's are designed to prevent his toes to drop when he walks, so there is less mobility.  The therapist had to try a couple of different "stops" to see which one works best for him now.  This required a lot of walking with the different levels of stops.  She did decide on a lower stop to give him more mobility but as his toe drop gets worse the level will need to be increased.  Needless to say he was pretty tired after his session. 

After this week of camp he has one more weekend and then the rest of the summer will be filled with family camping, Ryde 4 Tylor (August 11), a trip to Nashville, and maybe some relaxing in between all of that!! Then he starts school on August 21st....which is so crazy to me! I feel like he just got out of school and now he is going to be a Sophomore!! 

I hope all his readers are enjoying their summer as much as we are...Thank you for your love and support!!

Tylor's Hero was in Dubuque!!

Tonight I got a call from Ty's friend, Sam, to tell us that BRETT FAVRE was in Dubuque this afternoon.  Brett gets his golf carts/four wheelers through Harris Golf Carts and the owner is good friends with Bubbs (the owner of the Dog House).  Bubbs health is not well so he paid him a special visit.  It is awesome how Brett keeps giving!!  I wish we could have seen him again...Tylor cried when he found out that he didn't to see his friend.

Bubbs donated some items to Tylor's benefit and was very kind to give us a picture of him and Brett at Brett's home.  Please pray for him and his family!!  Thank you Bubbs for your generosity.

A little side note...What is even crazier that Brett was in town is that we were in Cadott at Country Fest this weekend and saw someone with a Falcon Favre jersey on.  I have been trying to find one for a couple of years  for Ty so he would  have all four jerseys from him but I have not had any luck.  This young man was the owners son and after talking to them about Tylor and his story he gave us the jersey!!!  How awesome his that??  So now Ty has the complete collection!

Website and Camp

I am not sure if some of you still go to Ty's website...fightingnpc4tylor.com but I am having some problems with it and since I do most of the updates on his blog I have decided to shut down the website and do everything on the blog.  I am working on adding pages with the information from the website. It has been a slow process but I will get there. Please pass the word so people still know that the blog is still up and running!!

Well Sunday Ty goes to camp for the first time this summer for a week!  He is so exciting to see his friends and is hoping that Jason will be there.  His friend that is another die hard Cubs fan!  The only sad part is that his favorite counselor, Rich, could not make it back this year.  We will miss him dearly but I am sure Ty will have other counselors that love him as much as Rich does!

Here are some pictures from the past couple of weeks...thought you might enjoy them.

Tylor and Blake racing

S'more please

Glow gun fight

Resting after a long weekend of camping

Open wide

Everything looks good...way to go Ty

Playing a little baseball

Ty and Josie catching some zzzz's

Ty and Justin taking a ride

Justin and Ty loved every minute of it

Mom and Ty at the White's party

Ty and Jason

Ty taking Sy for a ride

Justin taking Tylor back to the camper for me to get ready for bed

Ty Bug's Duck...The Lady Bug

Ty's Duck is the lead!!

Well we didn't win the Grand Prize but Ty's lady bug duck won the first heat so at least we got into the final race!  It sounded like they had amazing turn out and everyone had a great time!  Thank you everyone who supported the Ducks for Bucks event to help find a cure for Niemann Pick Type C.