PWS- the GOOD, the BAD, and the UGLY

In this past year that I have slacked with my blog Ethan has had a lot going on. He has many new accomplishments as wells as some new struggles. ( which will come in a later blog)

Lets start with the UGLY- When I think of the ugly of Prader Willi the first thing that comes to my mind is the doctors appts.  The blood draws, sleep studies, EEGs, surgeries, all the stuff that brings fear or pain to my child.  It is a hard age right now because Ethan is now smarter enough to know we are at the doctors before we even walk in the door. His fear of the doctors has become so bad that he will literally cry from the parking lot until we go home.

The UGLY is people not understanding, looking at you like you are a terrible mother because your kid is throwing a fit at a well visit when the doctor is taking his weight and height, because they don't understand that your child has every right to be scared. That they have been through more than most.

The UGLY is when the bank teller gives your kid a sucker every time we go to the bank not realizing that he can't have sugar and then he has a breakdown when you tell him no.

The UGLY is everyone sitting around enjoying birthday cake while your child cries because he can't have any. Or telling your child no when he asks for food, way more often then you can tell him yes.

The UGLY is Collin Brewer saying " kids with disabilities should be put down" or people using the R word around my child.

The UGLY is having your heart break at birthday parties while your child plays by himself  because he can't keep up while all the other kids play together.

The UGLY is seeing numerous posts of people with Prader Willi passing away way to young. Or having that constant fear that maybe you aren't doing everything you can to make your kids life better/easier.

As many of you know there are many more UGLY sides to Prader Willi and there is no warning when it will rear it's ugly head into your day. I think for us the UGLIEST is yet to come. The thought that one day Ethan will constantly be hungry and we will have to tell our child he can't eat is the UGLIEST of them all .

The BAD

The BAD kinda goes along with the UGLY, but in my opinion here are the bad.

The BAD - insurance companies---- I hate them

The BAD is how hard Ethan has to work every single day. Physical, Occupational, Behavioral, and Speech therapy consumes a lot of time, that Ethan doesn't get to be just a kid.

The BAD you have spend time planning meals. There is no more grabbing something while you run out the door to eat. You have to pay attention to calories, sugars and fats more than you ever thought you would.

The BAD- the pressure as a parent that you put on yourself.  Do you mainstream him or put him in special needs schools? .... do you drop one therapy for the other therapy?....... do you do the surgery to remove his tonsils and adenoids with there being a chance it doesn't help?...... so many decisions.

The BAD- the heartbreak. The heartbreak you feel when he is being held down by three nurse to give blood and he is looking at you for help, the heartbreak you feel when he get frustrated because he tries so hard to get the words out but just can't do it.The heartbreak you feel when you notice how far your child is behind. The heartbreak that comes along with all the UGLIES above.

The BAD- awareness. Although we as a PWS community have come so far from 10 years ago, there is still a lack of awareness and research for PWS.

The BAD- Finding doctors that know what they are talking about are few and far between. Also when doctors won't hear your opinion.....sometime you just want to say " Yes you studied and you have done some research, but we live with it everyday. I know my kid better than you."

The BAD- well I could go on and on.so here is a list so i can get onto my favorite.... the GOOD.  behavioral issues, OCD, speech delays, low muscle tone, temperature control, sensory issues, balance, hypothyroid, sleep apnea, anxiety, mental delays, cognitive delays, motor skill delays... so on and so on... I am ready for some GOOD.

The GOOD- I truly have the most loving child I have ever met. He has a huge heart and loves to cuddle.

The GOOD- Ethan enjoys the simple things. Give that kid a string or belt and he will keep himself busy for hours. He doesn't need the fancy toys.

The GOOD- the best personality. He is a joker, and loves to laugh.

The GOOD- I watch him melt hearts all around him. I see people fall in love with Ethan and his story. People are proud of him for how far he has come. People are inspired by him.

The GOOD- You don't take the small successes for granted. We celebrate more, because we celebrate the milestones that are small to others, but are huge to us.

The GOOD- it is humbling. I know it has made both Kevin and I better people. It has opened my eyes to what is important and what is worth complaining about. I appreciate things I never did before.

The GOOD- a different kind of love. Although we give him tough love with food, I feel there is a different type of love between a parent with a special needs child., ( not taking anything away from other parents). it's just different. Your child needs you more than a typical kids, he depends on you to be his voice and his advocate, and he trusts you 100%. He expects you to be his best friend at that birthday party when all the other kids are playing together. He looks at you to understand what he is trying to say when others can't. You know what it takes to calm him down when the behavioral meltdown comes out. You know with his OCD exactly how he likes to hang his strings and belts and you don't question it. You know his routine, and stand by him because you understand he can't help it.

Once again i could go on and on about the GOOD.... but I will stop now.

I will finish by saying the BEST thing about PWS is it has given me Ethan Mac just the way he is. I know without PWS we wouldn't have to deal with all the UGLY and the BAD, but I can't imagine not having all those GOODS I look forward to every day .

PWS - to the White House

I looked at my blog today and couldn't believe it has almost been a year since I last wrote a post. Sometime life just gets in the way of all the things you want or plan to do.

Being the day that Prader Willi is getting recognized at the White house, I thought it would be a perfect day to start blogging again.


please see below. This is incredible. Keegan and Tanya do so much for the PWS community. . I can not wait to hear the update from the White House.

PLease Keep Voting

http://communities.challenge.gov/submissions/6800-take-one-small-step

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

http://video.avalanche.nhl.com/videocenter/console?hcatid=587&id=163999

So much progress.... getting closer and closer

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



ETH RIDING A PONY AT THE STOCK SHOW




GETTING READY FOR THE STOCK SHOW



PLAYING WITH COUSIN DOLTON

ETH AND RY

LOVES PAPA DAN

GO BRONCOS




 

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.