PWS Awareness Month- Day 22

Hey Everyone,

 We hope that you all will join us for our 3rd Annual One Small Step Walk!  Details are below.  

One Small Step Flyer 2017-01 (1)

 

Love,

The Demands

 

One Small Step Walk for Prader-Willi Syndrome Research at the Belterra Recreation Center in Dripping Springs, Texas on October 10, 2015. Photo by Lauren Gerson.

 

 

PWS Awareness Month-Day 12

Hi Everyone,

Today we will be talking about Kemett!  We have told you a lot about Prader-Willi Syndrome but that does not define Kemett.  Here is some insight into this amazing kid!

  • Books: Kemett loves books.  He wants to read all the time, or flip through books.   This boy has an amazing memory, so even if we’ve read a book once (and these aren’t short board books, he likes longer story books), he will remember names and details. Last summer we read 1000 books!  He loves Madeline, The Three Little Pigs, Little Red Riding Hood (anything with the big bad wolf!), history- Ruth Bader Ginsberg, Martin Luther King, Jr, Amelia Earhart, Albert Einstein, Ruby Bridges, and so much more!
  • Music- I like to call myself the human jukebox.  I will sing Kemett songs about all kinds of things, all he has to do is ask me.  And believe me he does!  He also, recently, starting singing songs and enjoying music Andrew and I play for him.  He really likes Ophelia by the Lumineers, Seven Nation Army by the White Stripes, Black Sabbath- Iron Man.
  • Family: Kemett talks about his family all the time- his grandparents, great grandma’s, cousins, aunts, uncles, etc.  He is such a sweet boy!
  • Playground: He loves to play on our play set in the backyard and his play house.  He is getting so fast going up the rock wall and steps.
  • School: Kemett loves school. We will have a post about this topic!
  • Friends: He loves his friends and talks about them often.  Even if we don’t get to see them very often, Kemett still remembers them and things they did together last time they played.
  • Animals: Kemett loves horses and our two doggies.  Although he is allergic to our dogs, we still let him interact with them occasionally and he just loves it.  Ginger, our younger dog, has always been scared of kids, but she does not hide from Kemett.  Now Mabel might be another story!
  • Dolls: Kemett loves stuffed animals and tiny dolls, like the Little People.  He makes them play with each other, talk to each other and all kinds of things.  Pretend play can be hard for kids with PWS but he has done really great so far.  We are doing a clinical trial and will have a post about that later this month.
  • Daniel Tiger, SuperWhy, Curious George: Kemett does not get to watch much TV but when he does these are the ones he asks for.
  • History:  I was a history major, so I love that Kemett wants to read about presidents, civil rights leaders and can tell me who our president and other officials are in our country.  He also can name past leaders, and his favorite supreme court justice and president!
  • Superheroes: Thanks to comicon and Kemett’s Uncle Billy, Kemett has enjoyed playing with and reading about superheroes.
  • Dress Up:  He loves to dress up and asks to dress up as some of his dolls.  He has a dress up box now.
  • Coloring and Painting: Kemett is so creative and loves to paint pictures!

As you can see, Kemett is a well rounded kid with tons of interests.  We keep helping him to expand his knowledge, and he surprises us everyday with what he has learned.  We are just so proud of him and where he is today.

Thanks for following our journey!

Love,

The Demands

 

 






 

 

PWS Awareness Month – Day 6

Hi Everyone,

So as some of you may know, we are selling shirts to raise money for our One SMALL Step walk!  Our good friend, Elizabeth, has designed the coolest shirt for our sweet Kemett!

You do not have to live in Texas to get your own shirt.  We hope that people across the country will show their support and get an In It For Kemett shirt!  It will definitely help raise awareness because Kemett is such an unusual name.

You can click here to order!  Sales are open until May 30th!img_9062

Thanks for your support!  Tomorrow you will learn more about PWS.

Love,

The Demands

PWS Awareness Month -Day 5

Hi Everyone,

First, I want to say Happy Birthday to my mom!  We love you so much!  Thank you for all you do for us!

Today I thought I’d give you a quick update on the rest of Kemett’s doctors:

Dr. Scheimann: We saw her in December.  Kemett is looking good but we won’t know what’s really going on with his EoE until we do a scope in June.  We haven’t been able to get a scope done in almost two years.  Kemett has been off of nexium twice a day, and we hope everything looks good to take him off of it completely.  He’d go on zantac or something like that if this is the case.  His eczema has been so much better last summer and even now as it’s getting hot (that’s when it’s worse for him), so I hope that’s a good sign.

Dr. Kang: We have our sleep study in June.  It got pushed because Kemett got sick.  You do not want to have a sleep study when you are congested because it will not be accurate.  Last year Kemett’s study showed mild obstructive apnea due to his low tone in his mouth.  Kemett ended up having fluid in his lung and a partially collapsed lung.    Our kids can have such a high pain tolerance and hide illness.  We cannot thank Dr. Kang’s office enough for their help on the phone and in their office as Kemett became scary sick.  It came out of nowhere, but now he’s doing great!

Dr. Kim (dental): Kemett’s teeth are looking great so far.  We are getting sealants put on in June when he goes under for his scope.

Dr. Varshney: Kemett’s egg levels went down, and soy and some treenuts are lower.  If he scopes clean in June we might get a chance to trial some new foods!  Everything else is very high and could be anaphylactic if he consumed, so we must continue to be very careful.

Dr. Zapata: Kemett’s tonsils are tiny and looking good still!  We will talk to her again after the sleep study results come in.

Dr. Kelly- He is the cranial facial plastic surgeon that we see every two years.  He said Kemett’s jaw is still looking good and no need for surgery anytime soon.  So he is now an as needed doctor!

Dr. Busse- Kemett’s eyes looked good when we saw Dr. Busse last year.  Kemett does cross in with his right eye occasionally but it’s normally when he’s extremely sick or tired.  Dr. Busse said he’d need to be doing this 20% of the time for us to be concerned and he does not.

Dr. Sargent- Kemett’s hip was a little tight on one side, so we have been working with PT to do some stretches to help his hips.  We will go back in a couple of months to have another xray done.

Overall, things are looking good.  Kemett has a co-case scheduled in June for his upper endoscopy with Dr. Heintz and sealants with Dr. Kim.  We are nervous because he will be under longer than he has been before.  Last time we had a hard time waking him up which is incredibly scary.  Kids with PWS don’t metabolize medications the same way we do in their system, so they get very small amounts of anesthesia and no narcotics.

Please let us know if you have any questions about Kemett’s doctors!  Thanks for your support!

Love,

The Demands

 

PWS Awareness Month – Day 4

Hi Everyone,

In February we went and visited Dr. Miller.  We had a great trip, and even had a chance to go to the beach!

Dr. Miller thought that Kemett looked great.  His BMI was high but once she saw him she was happy with his weight and height.  Kemett’s IGF-1 levels are high right now, but there is no where for us to cut carbs and she didn’t want to lower his growth hormone either. At the moment, they don’t know much about prolonged high IGF-1 levels.  There are some studies that show it could cause colon cancer when he is an adult.   So right now we are keeping his growth hormone where it’s at and will continue to monitor through blood checks.  She thinks it will lower naturally over time.

We are going to start a therapeutic listening system next week, recommended by Dr. Miller.  We have purchased the headphones and our occupational therapist is getting trained this past weekend to get us started.  This will help increase Kemett’s processing time.  We are looking forward to trying it and will try to write a blog post to explain this more next week!

Kemett’s anxiety has started to increase, not about food but just about things in his life.  I am working with him to do deep breathing, progressive muscle relaxation and yoga.  I want to help him build the tools he can use when his anxiety gets high.  I’ve also made social stories especially when we leave town so he knows what we will be doing.  He’s a homebody (wonder where he got that from!).

Dr. Miller was not surprised to hear that Kemett’s cognition is with his peers or above!  He is one smart kid!

Overall it was a positive visit, and we will see her again next year.

We drove to Florida this year, so we got to stop and see my grandma to and from, and we spent a few nights in Destin, Florida.  It was a nice break for our normal routine!

Please let us know if you have any questions!  Enjoy some pictures from our trip below!

Love,
The Demands

 

Destin Beach

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Enjoying our trip!

PWS Awareness Month- Day 3

Hi Everyone!

Today I wanted to check in about our #15forthe15th Challenge.  Do we have anyone participating with us?  It has been so nice to see our pages light up with new healthy eating, hanging out with the family outside, and reading!

May 1, I began Whole30.  We did a huge makeover of our diet after Kemett was born, but after being pregnant and breastfeeding, I need a reset.  I have to remind myself that between PWS and allergies, Kemett doesn’t get to eat a lot of foods, so this isn’t a big sacrifice for me to do this for 30 days.  I prepped my breakfast for the week on Sunday, and bought some food for my lunch and snacks.  Today is Day 3 and I think I can do it!  I just need to make sure I’m getting enough water in, and calories since I am nursing.  I am looking forward to having more energy!

Kemett is riding his tricycle or walking for 15 minutes a day with the family.  He got a tricycle for Easter, and is slowly catching on.  I cannot wait to see him actually pushing the pedals on his own.  Right now he is just getting used to the movement.  Our goal is to get out while the weather is still nice and not too hot for him.  Hope we make it through the month!


Andrew just competed in Master’s National’s swim meet (and received a medal in the 50 Free- Go Andrew!), and has decided to swim 15 miles one week this month!  We will let you know when he’s picked his week.

We hope you will join us this month and support Kemett in a #15forthe15th challenge!  We’d love to feature your story in our blog of why you are participating in #15forthe15th- let me know if you’d like to do that!

Over the next couple of days we will give doctor updates and next week therapy.  Can anyone guess how many doctors/therapy appointments Kemett had in April?  We will announce the answer later today!

Love,

The Demands

15forthe15th

PWS Awareness Month- Day 2

Hi Everyone,

Today, I wanted to point everyone to FPWR’s Awareness Month page!

There are some really great tools on here to help you raise awareness, change your profile picture, print out a cool coloring page that my friend Quyen designed, and so much more!  As you all know, I work for FPWR and helped put this page along with emails, blog posts and social media posts together, so I hope you will take the time to follow us, subscribe to the emails, and share!

Here is a picture of Kemett’s coloring sheet! As always, let us know if you have questions or want to learn about something specific this month.

Kemett with this coloring page!  He’s also wearing Andrew’s newest Master’s medals!


And we’d love to see your coloring sheet! Mine is below!

Love,

The Demands

Kemett helped me out on this one with those dots!