Wednesday, May 2, 2012
Wednesday, March 21, 2012
Avs Better Halves Brunch
Every year the Colorado Avalanche teams up with Children's Hospital and the Kroenke Sports to do a charity brunch to benefit Children's Hospital. The Avalanche players serve the brunch and their wives/girlfriends come to help with auction items and what not. They also have a fashion show at the end of the event which the Avalanche players escort a patient of Children's hospital down the isle. They pick a group of kids that have spent a good amount of time at Children's and they do a varity of all different health issues.
This year Ethan was choosen to be one of those kids. It was such an amazing event. Both Kevin and I were very excited to meet the players, also very excited to see Ethan on the runway getting recognized for his strength and everything he has been through.
The morning started at 9 am where we were able to sit and eat brunch with some of the other families. We met so many brave children that have been through more than anyone should ever. We got to speak with the parents of these kids and got hear about their journeys. Although these parents have been lead down a different path then us there is still a connection you feel to them. You know that these parent like us weren't prepared for the challenges, and at time have been sad, mad and woren out. I also noticed the pride all these parents felt for their kids, and how proud they were of them.
I started talking to one of the dad's that had a teenage boy, and as we were talking he said " his whole life I have been waiting for the day he comes home crying because someone made fun of him" I couldn't beleive he just mentioned the exact issue that keeps me awake at night, but then he finshed saying " but it never happened. Our kids are so much stronger than we give them credit for. I don't doubt it doesn't happen, but he just doesn't let it get to him, he has been through so much he is stronger than most" This is a conversation that I will remember for a lifetime.... I have truly worried about Ethan going to school and getting made fun of since the second we got the diagnoses. He taught me not to waste the good years on something that may never happen, and to recongnize the strength in Eth.
After chatting with the other "models" and their parents we were introduced to the Avs players and coaches. Each kid got asigned a player. Ethan's player was Chuck Kobasew #17. He was so nice and so good with Ethan. Being the little flirt that he is Ethan really liked his wife. Chuck and his wife took Ethan around and introduced Ethan, Kev and I to all the players. We got all the players signed players cards, and Ethan got a stuff Bernie autographed by the team. It was so surreal to have these professional althletes take the time out of their lives to come to this event to not only raise money for Children's Hospital but to give your child a special day. Ethan being so young may not of know how special that day was but the older kids will remember that day for life.
Once we did the meet and greet we went up stairs for the fashion show. This is when is got panicked. We had to leave Ethan behind with his player and wait to see him walk the runway. Lucky for me two of my sistes work at Kroenke and were volunteering that day, so Ethan always had a fimilar face around. Once Kevin and I entered the room with 500 plus people waiting for the fashion show we started getting nervous. The first kid came out, and lights and music and 500 people clapping started..... I was so scared when it was Ethan's turn he was going to be over stimulated and freak out. Not only is this the first time we have ever left him with a strange person he has never met and actually walked away, but he would be in front of all those lights, music and people soon.
Lucky for us Ethan was paired up with Chuck ( like I said before) and he has a 18month old and 3 year old, so he was so good with Ethan and making sure he was comfortable. When it was Ethan's turn I felt so nervous. Tom Green started reading Ethan's introductions, and of course I was already crying because I cried through the whole thing, I started crying harder. Once they introduced them and they walked out I was so proud, he did such an awesome job. Spongebob Square pants was his song he walked out to. He started waving to everyone, and then clapped down the whole runway with the crowd. He was such a crowd pleaser.
At the end of the fashion show Tom Green did a speech about how so many kids look up to these athletes but today they were recognizing the true heros.... and I would have to agree. Every kid that walked that runway made me cry, they were all amazing kids with amazing hearts. This will be a day I never forget.
If you want watch the fashion show Ethan comes on at 10:52 of the below video
Tuesday, February 28, 2012
Tuesday, January 31, 2012
BEEN A LONG TIME
I HAVE BEEN SLACKING LATELY WITH MY BLOG, BUT LIFE IS JUST TOO BUSY SOMETIMES.
SINCE MY LAST BLOG ETHAN HAS IMPROVED SO MUCH AND IS CRAWLING ALL OVER THE PLACE. IT IS AMAZING TO SEE HOW EVERYTHING IS CONNECTED. SINCE HE HAS STARTED CRAWLING, HIS SPEECH IS GETTING BETTER ( HE IS MORE VOCAL AND MAKING A WIDER RANGE OF NOSIE) AND HIS EATING HAS GOTTEN BETTER. HE IS REALLY GETTING THE HANG OF EATING MORE SOLIDS AND TRYING NEW FOODS. FROM DAY ONE OUR OCCUPATIONAL THERAPIST ALWAYS TOLD US EVERYTHING IS CONNECTED AND WE ARE NOW SEEING IT FIRST HAND.
WE ARE STILL DOING HIS 3 DIFFERENT TYPES OF THERAPY, AND I THINK HE IS PROGRESSING IN ALL OF THEM. LETS CATCH UP.
SPEECH- STILL NO MORE WORDS, BUT LIKE I MENTIONED ABOVE MORE NOSIE. HE ALSO HAS LEARNED A FEW MORE SIGNS. SPEECH IS ONE THAT WE KNOW WILL NOT COME EASY AND COULD TAKE A WHILE BEFORE ANYMORE WORDS COME. SO RIGHT NOW WE WILL CONTINUE TO WORK HARD ON HIS SIGNS AND CONTINUE TO BE IMPRESSED WITH HOW SMART ETH IS. HE CATCHES ON SO QUICKLY IT'S AMAZING.
WE TOOK HIM TO GO GET HIS HAIR CUT THE OTHER DAY AND THE LADY LET ETH PLAY WITH HER COMB, WHEN SHE TOOK IT AWAY HE STARTED SIGNING " MORE PLEASE" THE LADY COULDN'T BELEIVE IT, SHE WAS VERY IMPRESSED AND SO WAS I. I KNOW HE CAN DO IT BUT NOT OFTEN DOES HE DO IT TO PEOPLE HE DOESN'T KNOW. THEN WE WERE LEAVING AND ETHAN SIGNED " THANK YOU". IT IS SO NICE TO SEE EVEN THOUGH HE CAN'T SAY IT HE CAN STILL COMMUNICATE WITH PEOPLE.
OCCUPATIONAL - ETH IS IMPROVING TREMENDOUSLY WHEN IT COMES TO EATING. FOR A WHILE THERE I WAS NERVOUS THAT WE WOULD BE FEEDING HIM BABY FOOD FOREVER, BUT ONCE HE GOT THE CONCEPT HE HAS ONCE AGAIN PROVEN ME WRONG. ETH LOVES TRYING NEW FOODS, AND WE HAVEN'T FOUND ANYTHING HE DOESN'T LIKE YET. IT IS ALSO SO MUCH EASIER FOR US TO JUST FEED HIM A LITTLE OF WHAT WE ARE EATING INSTEAD OF MAKING HIM HIS OWN MEAL.
PHYSICAL- HE IS CRAWLING AROUND ALL OVER THE PLACE ( THAT IS SOFT) HE IS STILL NOT A FAN OF CRAWLING ON THE HARDWOOD FLOORS, BUT I DON'T REALLY BLAME HIM. WE ARE NOW WORKING ON STANDING. DURING THERAPY WE PUT HIS LITTLE ANKLE BRACES AND SHOES ON AND PRACTICE STANDING HOLDING ON TO THE TABLE OR COUCH. HE LOVES TO PRACTICE STANDING, AND USUALLY CRIES WHEN WE ARE DONE. THE GOOD NEWS IS HE IS INTERESTED IN LEARNING HOW TO STAND ON HIS OWN AND TRIES REALLY HARD, THE BAD NEWS IS HE HAS ZERO BALANCE. IT IS GOING TO TAKE HIM SOME TIME TO GET A HANG OF THIS NEW CHALLENGE, BUT LIKE EVERYTHING ELSE ETHAN WILL DO IT ON HIS OWN TIME.
IT HAS FINALLY HIT ME THAT I NEED TO START TAKING BETTER CARE OF MYSELF TO HELP ETHAN. NOW THAT HE EATS WITH US A LOT MORE, WE NEED TO EAT A LOT HEALTHIER. I AM TRYING TO COOK MORE AT HOME, AND AM TRYING TO ADD SOME NEW HEALTHY SNACKS TO THE HOUSE. FOR ANYONE WHO KNOWS US KNOWS THAT THIS WILL BE EXTREMLY HARD FOR KEVIN AND I, WE EAT MORE JUNK FOOD THAN ANYONE I KNOW, LUCKY FOR US WE HAVE THE CUTEST LITTLE MOTIVATOR .
SPEAKING OF MOVTIVATION MY SISTER TALKED ME INTO DOING A YOGA CLASS SUNDAY. NEVER DOING YOGA BEFORE I HAD NO IDEA HOW HARD THE CLASS WOULD BE. IT DOESN'T HELP THAT I AM IN THE WORST SHAPE OF MY LIFE, BUT I STILL DIDN'T THINK IT WOULD BE HARD FOR ME. I WAS SO WRONG. DURING THE CLASS THE INSTRUCTOR TOLD US TO THINK OF ONE PERSON THAT NEEDS GOOD ENERGY AND OF COURSE ETHAN WAS MINE. THROUGH OUT THE CLASS DURING THE HARDEST TIMES THAT I WANTED TO QUIT, I KEPT THINKING ABOUT HOW HARD ETH HAS TO WORK EVERYDAY JUST TO DO THE LITTLE THINGS WE TAKE ADVANTAGE OF, AND I STARTED TO THINK ABOUT HOW HARD HE GETS PUSHED AT PHYSICAL THERAPY AND THAT WE NEVER LET HIM QUIT. TO ME THAT WAS ALL THE MOTIVATION I NEEDED TO PUSH THROUGH THAT CLASS NO MATTER HOW MANY TIMES I WANTED TO QUIT. ETHAN HAS GIVEN ME STRENGTH WITHOUT EVEN KNOWING. NOW EVERYTIME I WORKOUT AND I THINK OF THOSE THERAPY SESSIONS WHEN ETHAN CRIED AND CRIED BECAUSE HE WAS PUSHING HIMSELF SO HARD, IT HELPS ME PUSH THROUGH MY OWN STRUGGLES.
UNTIL NEXT TIME, HERE ARE SOME CUTE LITTLE PICTURES
SINCE MY LAST BLOG ETHAN HAS IMPROVED SO MUCH AND IS CRAWLING ALL OVER THE PLACE. IT IS AMAZING TO SEE HOW EVERYTHING IS CONNECTED. SINCE HE HAS STARTED CRAWLING, HIS SPEECH IS GETTING BETTER ( HE IS MORE VOCAL AND MAKING A WIDER RANGE OF NOSIE) AND HIS EATING HAS GOTTEN BETTER. HE IS REALLY GETTING THE HANG OF EATING MORE SOLIDS AND TRYING NEW FOODS. FROM DAY ONE OUR OCCUPATIONAL THERAPIST ALWAYS TOLD US EVERYTHING IS CONNECTED AND WE ARE NOW SEEING IT FIRST HAND.
WE ARE STILL DOING HIS 3 DIFFERENT TYPES OF THERAPY, AND I THINK HE IS PROGRESSING IN ALL OF THEM. LETS CATCH UP.
SPEECH- STILL NO MORE WORDS, BUT LIKE I MENTIONED ABOVE MORE NOSIE. HE ALSO HAS LEARNED A FEW MORE SIGNS. SPEECH IS ONE THAT WE KNOW WILL NOT COME EASY AND COULD TAKE A WHILE BEFORE ANYMORE WORDS COME. SO RIGHT NOW WE WILL CONTINUE TO WORK HARD ON HIS SIGNS AND CONTINUE TO BE IMPRESSED WITH HOW SMART ETH IS. HE CATCHES ON SO QUICKLY IT'S AMAZING.
WE TOOK HIM TO GO GET HIS HAIR CUT THE OTHER DAY AND THE LADY LET ETH PLAY WITH HER COMB, WHEN SHE TOOK IT AWAY HE STARTED SIGNING " MORE PLEASE" THE LADY COULDN'T BELEIVE IT, SHE WAS VERY IMPRESSED AND SO WAS I. I KNOW HE CAN DO IT BUT NOT OFTEN DOES HE DO IT TO PEOPLE HE DOESN'T KNOW. THEN WE WERE LEAVING AND ETHAN SIGNED " THANK YOU". IT IS SO NICE TO SEE EVEN THOUGH HE CAN'T SAY IT HE CAN STILL COMMUNICATE WITH PEOPLE.
OCCUPATIONAL - ETH IS IMPROVING TREMENDOUSLY WHEN IT COMES TO EATING. FOR A WHILE THERE I WAS NERVOUS THAT WE WOULD BE FEEDING HIM BABY FOOD FOREVER, BUT ONCE HE GOT THE CONCEPT HE HAS ONCE AGAIN PROVEN ME WRONG. ETH LOVES TRYING NEW FOODS, AND WE HAVEN'T FOUND ANYTHING HE DOESN'T LIKE YET. IT IS ALSO SO MUCH EASIER FOR US TO JUST FEED HIM A LITTLE OF WHAT WE ARE EATING INSTEAD OF MAKING HIM HIS OWN MEAL.
PHYSICAL- HE IS CRAWLING AROUND ALL OVER THE PLACE ( THAT IS SOFT) HE IS STILL NOT A FAN OF CRAWLING ON THE HARDWOOD FLOORS, BUT I DON'T REALLY BLAME HIM. WE ARE NOW WORKING ON STANDING. DURING THERAPY WE PUT HIS LITTLE ANKLE BRACES AND SHOES ON AND PRACTICE STANDING HOLDING ON TO THE TABLE OR COUCH. HE LOVES TO PRACTICE STANDING, AND USUALLY CRIES WHEN WE ARE DONE. THE GOOD NEWS IS HE IS INTERESTED IN LEARNING HOW TO STAND ON HIS OWN AND TRIES REALLY HARD, THE BAD NEWS IS HE HAS ZERO BALANCE. IT IS GOING TO TAKE HIM SOME TIME TO GET A HANG OF THIS NEW CHALLENGE, BUT LIKE EVERYTHING ELSE ETHAN WILL DO IT ON HIS OWN TIME.
IT HAS FINALLY HIT ME THAT I NEED TO START TAKING BETTER CARE OF MYSELF TO HELP ETHAN. NOW THAT HE EATS WITH US A LOT MORE, WE NEED TO EAT A LOT HEALTHIER. I AM TRYING TO COOK MORE AT HOME, AND AM TRYING TO ADD SOME NEW HEALTHY SNACKS TO THE HOUSE. FOR ANYONE WHO KNOWS US KNOWS THAT THIS WILL BE EXTREMLY HARD FOR KEVIN AND I, WE EAT MORE JUNK FOOD THAN ANYONE I KNOW, LUCKY FOR US WE HAVE THE CUTEST LITTLE MOTIVATOR .
SPEAKING OF MOVTIVATION MY SISTER TALKED ME INTO DOING A YOGA CLASS SUNDAY. NEVER DOING YOGA BEFORE I HAD NO IDEA HOW HARD THE CLASS WOULD BE. IT DOESN'T HELP THAT I AM IN THE WORST SHAPE OF MY LIFE, BUT I STILL DIDN'T THINK IT WOULD BE HARD FOR ME. I WAS SO WRONG. DURING THE CLASS THE INSTRUCTOR TOLD US TO THINK OF ONE PERSON THAT NEEDS GOOD ENERGY AND OF COURSE ETHAN WAS MINE. THROUGH OUT THE CLASS DURING THE HARDEST TIMES THAT I WANTED TO QUIT, I KEPT THINKING ABOUT HOW HARD ETH HAS TO WORK EVERYDAY JUST TO DO THE LITTLE THINGS WE TAKE ADVANTAGE OF, AND I STARTED TO THINK ABOUT HOW HARD HE GETS PUSHED AT PHYSICAL THERAPY AND THAT WE NEVER LET HIM QUIT. TO ME THAT WAS ALL THE MOTIVATION I NEEDED TO PUSH THROUGH THAT CLASS NO MATTER HOW MANY TIMES I WANTED TO QUIT. ETHAN HAS GIVEN ME STRENGTH WITHOUT EVEN KNOWING. NOW EVERYTIME I WORKOUT AND I THINK OF THOSE THERAPY SESSIONS WHEN ETHAN CRIED AND CRIED BECAUSE HE WAS PUSHING HIMSELF SO HARD, IT HELPS ME PUSH THROUGH MY OWN STRUGGLES.
UNTIL NEXT TIME, HERE ARE SOME CUTE LITTLE PICTURES
 |
| ETH RIDING A PONY AT THE STOCK SHOW |
 |
| GETTING READY FOR THE STOCK SHOW |
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| PLAYING WITH COUSIN DOLTON |
 |
| ETH AND RY |
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| LOVES PAPA DAN |
 |
| GO BRONCOS |
Tuesday, January 3, 2012
So proud of Eth..... he is so close
As many of you know we have been working on crawling with Eth for a long frustrating while. In this video you will see how far he has come, he is so close. Not only does Ethan have a disadvantage because of his low-tone from PWS he also had to regain all strength back into his legs after being in the Spica cast during the summer.
He works so hard and it makes me proud. Hopefully he will continue tomove more and more each day.
He works so hard and it makes me proud. Hopefully he will continue tomove more and more each day.
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