Happy New Year!

Hello everyone,

As I write this, we are only a few hours away from the end of 2014 and the beginning of 2015.  There have been times when this year dragged on, and now, looking back, it feels as though it flew by.  Kemett has done so well this year and come leaps and bounds from where he was a year ago.  This year, I never thought Kemett would roll, sit up, crawl, stand or cruise, and he has accomplished all of these!  I wasn’t sure he would get off of his ng-tube and eat real meals in his high chair at 12 months, but he did it and faster than we expected.  The little baby who wouldn’t babble said pumpkin in October!  The baby that would not cry, and if he did it wasn’t for long, can now cry with the best of them when he wants!  He has truly turned into an amazing toddler right before our eyes.

Kemett is 4 Months!

Kemett at 4 Months!

Kemett is 16 Months

Kemett is 16 Months

None of this was easy for him.  Kemett works harder than anyone I know, everyday.  He has SIX therapies a week- occupational, speech and physical.  And due to his low muscle tone, it takes him longer to complete a task because he has to think about each muscle he is going to use- but give him time to think it out and he can do it.  When he is around his peers, I can tell he wants to walk and run with them, and he does his best to keep up.

Kemett is so social and friendly.  He wants to say hi to every person we pass and may even try to give them a hug.  It makes hard days easier when you see his sweet smile followed by the best hug ever!

He is curious and interested in what is around him.  He is constantly analyzing and exploring.  He loves books and being read to each day.

Kemett keeps us busy with 13 doctors in three cities.  But these doctors have discovered things about Kemett this year that have made his health improve greatly- allergies and asthma at the top of that list.  His doctors are amazing, and I’m not sure what we’d do if they didn’t seem to care about Kemett as much as we do.

And because of all of these doctors and PWS, we traveled to Florida twice and to New York.  We love to travel and this helped us have family time this year that was much needed.

And as in true Demand style, he is finally dancing!  To just about anything, except his dad’s heavier rock.  Although, sometimes it looks like he is head banging, so we better watch out.  I think he will be a ballet dancer.  Although his muscle tone may be low, he is quite flexible and I’ve already seen him doing some arabesque’s.

Happy Holiday's!

Happy Holiday’s!

Hopes and Dreams for 2015

That Kemett will walk and begin to talk more.  I want him to continue to be his happy social self.   I know his life won’t get easier, but we are doing everything we can to make sure he has the best life possible and it’s as typical as we can make it.

I am going to Meal Plan, finally!  I will share throughout the year how things are going with that.  I also want to go outside more and take more walks with Kemett.  We spent way to much time indoors this year due to therapies and illness.  I think he and I are both ready to explore more.

Please continue along on this journey with us into 2015.  This blog will continue to be a place that will explain what is going on with Kemett.

HAPPY NEW YEAR!

Love,

The Demands

 

New York, New York!

Hello Everyone,

In mid-November, the Demands ventured up to Garden City, NY for the Foundation for Prader-Willi Research’s annual conference.  We finally got to meet other parents from around the country who we had only spoken to on the phone, through email or on facebook.  It felt so good to be around people who understood everything you had gone through because they had been there too.  Even though everyone came from such different backgrounds, we all had one thing in common.  It felt like a long lost family.  I guess if you have to go through something like PWS with your child the bonus can be that you are surrounded by amazing people who want the same things for their children.

The conference was research heavy, so we heard from a lot of scientists, doctors and pharmaceutical companies.  There are some pretty amazing things going on right now for PWS research.   We are hopeful for Kemett’s future.

We also got to spend some time in Manhattan and tour the city.  It was cold and rainy so we did the best we could with the time we were given.

Overall our trip was a success and we came back inspired and motivated to continue raising money and awareness about Prader-Willi Syndrome!

Enjoy the pictures!

Love,

The Demands

 

Hanging out in Garden City.

Hanging out in Garden City.

Kemett enjoying the city!

Kemett enjoying the city!

Kemett's first train ride

Kemett’s first train ride

Macy's

Macy’s

Andy Warhol at MOMA

Andy Warhol at MOMA

Kemett loved MOMA

Kemett loved MOMA

Tree at Rockefeller Center

Tree at Rockefeller Center

Today show

Today show

FPWR Conference.  Angela and I made the program!

FPWR Conference. Angela and I made the program!

The MET

The MET

Degas at the MET

Degas at the MET

Guggenheim

Guggenheim

One SMALL Step!

Hi Everyone,

We had our first One SMALL Step walk on September 13!  It was a cold and rainy day.   We were not sure anyone would show up, but we were pleasantly surprised.  We had about 200 people come out in this terrible weather to support our family and the other seven PWS families that came.  What an amazing and humbling experience.  We are so lucky to have such a great support system around us.  We had a large raffle, a wine raffle, a raffle for a vacation, face painter, Zumba instructor, photo booth, bounce house (which we didn’t get to use) and bbq donated.  We also had great volunteers and in-kind donors.  This event would not have happened without the support of our community and their generous contributions.

Kemett is a star!  Here is a link to a great news story our local fox station did about Kemett and my co-hosts son, Joseph.

I am excited to announce that we raised over $117,000 for the Foundation for Prader-Willi Research.  100% of this money will go to research and clinical trials.  FPWR’s mission is “To eliminate the challenges of PWS, through the advancement of research.”  Andrew and I are so hopeful that Kemett will get to live his life FULL!  He will  have his dreams come true!  The future is bright and we feel so lucky to be a part of this, to contribute and make a difference.

I am also excited to announce that Angela, my co-host, and I won Hosts of the Year at the FPWR conference!  We raised the most money in the world and will get to host next year’s conference here in Austin, TX!  Of course we could not have done it without the fundraising efforts of all of the Austin area PWS families.

If you missed it, here are some great pictures below of our event, thanks to Blackbird Film, CO.  I hope you all can make it out next year!

Love,

The Demands

 

Group shot!  Thank you everyone!

Group shot! Thank you everyone!

Andrew, Kemett and I!

Andrew, Kemett and I!

Welcome!

Welcome!

Zumba!

Zumba!

The Frederick's!

The Frederick’s!

Demand Family

Demand Family

Angela, Joseph, Kemett and I

Angela, Joseph, Kemett and I

Ready, Set, GO!

Ready, Set, GO!

Kemett is 1!

Hi Everyone,

So this is very late!  I know Kemett is now 15 months but still wanted to do a 12 month update.  Pretend it is August 25, 2014!

  • Kemett is 31 inches long and 20 lbs 15 oz
  • He is still trying to crawl and is pulling to stand
  • He first molar is coming in!
  • He visited Clearwater Beach and Gainesville, Florida to see Dr. Miller
  • He went to Houston to see Dr. Scheimann
  • Kemett’s sleep apnea is worse but it is because of his low tone, reflux and maybe asthma
  • Kemett is starting on an inhaler
  • We visited the ER because Kemett had retractions when he was breathing.

Kemett is doing really well!  As the last post said, he had great doctors visits.  We did go to the ER after we got back from Houston and in our pulminary follow up, Dr. Kang let us know that he thought Kemett had asthma, not pneumonia.  He put Kemett on an inhaler and then told us that Kemett would probably be sick at least once a month through viral season.  We are so lucky to have some great doctors on our side!

But because Kemett was sick we cancelled his big birthday party and celebrated only with the grandparents.  It was a fun time!  We looked at old pictures, ate a cute water melon treat and opened gifts.

My next posts will update you all on our One Small Step Walk, our trip to New York for the Foundation for Prader-Willi Research Conference and hopefully just an update on Kemett now!

Love,

The Demands

 

Kemett is 1!

Kemett is 1!

Birthday fun!

Birthday fun!

His birthday treat!

His birthday treat!

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Happy Birthday!

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Happy Birthday!

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Happy Birthday!

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Happy Birthday!