PWS Awareness Month-Day 31

Hey Everyone,

We just want to take this time to say THANK YOU!  Thank you for reading our blog, following our journey, sharing our blog, asking questions, spreading awareness, supporting us and being there for us!  It means more than you will ever know.

This month can be emotional because we spend 31 days focusing on PWS, reading about it, sharing stories with each other, and talking about it.  Knowing we have such a strong support system, helps get through.

As always, we are here if you have questions anytime!

Thank you again!  We look forward to participating in the 15 for the 15th Challenge with all of you!  Can’t wait to see what you decide to do for Kemett and to raise awareness for PWS!

Love,

The Demands

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PWS Awareness Month- Day 30

Hey Everyone,

Just a reminder about our One SMALL Step Virtual Challenge.

  • I have decided to do 15 minutes of meditation a day.  So far it has been so rewarding and I cannot wait to keep you all updated on my progress!
  • Andrew has decided to swim 15 miles the week leading up to October 15th.
  • Kemett is walking daily- and doing great (as long as it’s not raining!).

We take One SMALL Step because it is something we can do for Kemett and all individuals with Prader-Willi Syndrome.  Andrew and I are not the type of people to sit still and keep quiet, especially for our own child.  By taking One SMALL Step- we are raising awareness, educating our community, and raising money for ground breaking research!  It allows us to make a difference in Kemett’s life.  We hope you will take One SMALL Step with us!  Why do you do it?

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One Small Step Dripping Springs Virtual Walk

October 15, 2016

Wherever  you are!

We would love for people to get active in support of Prader-Willi Syndrome, as well as active on social media!  First, we will talk about the challenge, and then about what we’d like for you to do!

The Challenge!

We are asking people to do an activity by October 15th that will involve the number 15 for the 15th Chromosome: #15forthe15th

Here are some examples:

  • Walk/Run 15 miles
  • Walk/Run 15 minutes a day
  • Take 15,000 steps a day/week
  • Swim 15 miles
  • Do 15 sit ups/push ups a day
  • 15 days in October to Raise Awareness about PWS
  • For 15 days give up sugar, your favorite food, or exercise daily
  • Raise Money!  Ask your friends to make donations- “I’ll do 15 push-ups for every $50 I raise for FPWR!”
  • Get together with your friends/family in your city
  • Find something that interests you and set a goal. Get creative! We want to hear your ideas!

Then What?

  • Announce your challenge on social media!
  • Use the hashtags: #15forthe15th, #OneSmallStep, #InItForKemett, #FPWR
  • Take pictures and post your progress on social media!
  • Join our event page on our One Small Step Walk Dripping Springs Facebook Page to encourage others and hear about challenges!

You can start now or wait until October!  No matter what you decide, we want everyone to be excited about raising awareness about PWS and One SMALL Step!

Thank you again for all of your support and love!  Thank you to everyone who has already donated!!

 

Love,

The Demands

PWS Awareness Month-Day 29

Hey Everyone,

Today we will be talking about behavior and mental illness.  Kemett has UPD subtype and it is known there is a greater chance of mental illness.

At the moment, Kemett’s behavior is pretty on par with a typical 2 year old.  We work hard with him on transitioning between activities, getting him to use his words when he is crying and upset about something, being flexible, pretend play and just general disobedience.  We have not had any meltdowns yet, although, I am preparing myself for the 3’s, which I hear can be harder than the 2’s.  So far Kemett does great on a flexible schedule.  Food is on a strict schedule but he often turns down a snack to continue playing.  It’s weird because as a PWS mom, it makes me so happy to hear he doesn’t want dinner because he is enjoying playing outside or with his books.

Of course, I worry about this a lot and when will the other foot drop.  It could happen any day that he develops an interest in food and starts having meltdowns related to food, schedule, etc.  That’s why we are preparing now the best we can without knowing what the future holds.

Mental Health

In addition to their involuntary focus on food, people with PWS tend to have obsessive/compulsive behaviors that are not related to food, such as repetitive thoughts and verbalization’s, collecting and hoarding of possessions, picking at skin irritations, and a strong need for routine and predictability. Frustration or changes in plans can easily set off a loss of emotional control in someone with PWS, ranging from tears to temper tantrums to physical aggression. While psychotropic medications can help some individuals, the essential strategies for minimizing difficult behaviors in PWS are careful structuring of the person’s environment and consistent use of positive behavior management and supports.

We have known since diagnosis that mental health issues are more prevelant in individuals with UPD but it wasn’t talked about much until this past year.  There was actually a Mental Health Summit and mental health professionals from all over came to discuss Prader-Willi Syndrome.  Notes from the Mental Health Workshop

There is now exciting research regarding predictors of psychosis going on: Here.

Kemett does not exhibit signs of OCD behavior yet, either, however, this is quite common in PWS will probably develop at some point.

We are doing the best we can without knowing what the future will hold for Kemett in regards to his behavior or mental health.  All we can do is fundraise for research so we can learn more about what to look out for and what to do!

Thank you for supporting us and asking questions this month!  Only 2 more posts!

Love,

The Demands

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Kemett’s last day of school.

PWS Awareness Month-Day 28

Hi Everyone,

Today we will be talking about Kemett’s recent trips to the ER.  An ER trip for anyone with small kids can be a scary experience.  Kemett has been to the ER 4 times in his short life and it is nerve-wracking.

The biggest things is that most doctors don’t know a lot about PWS.  They may have had a day they studied it in school, but they do not know anything current about it and maybe even haven’t seen someone in years or ever.  As you have seen, PWS is so complicated.  Kemett may have a high fever with no other symptoms but in reality has pneumonia or some other infection.  Their high pain tolerance often masks other symptoms.  We are lucky to have doctors who get it in and out of Austin.

Kemett’s first trip to the ER was when he was almost 12 months old and got a cold, and could not breath well.  He was having retractions and wheezing.  We were treated, things went away and we saw our pulmonologist soon after.  That’s when Kemett was diagnosed with Asthma.

Most recently, Kemett busted his chin open and then three weeks later his forehead.  Kemett cannot have narcotics.  Individuals with PWS’s bodies don’t metabolize these drugs the way our bodies do and they can stay in their systems for a long time.  It’s best if you can avoid them (understandably, this can’t always be the case).  During our first trip, I was so nervous about what to do.  Luckily, I was able to get in touch with Dr. Miller, who talked to the amazing ER doc.  He listened to everything she had to say and told us she was worth her weight in gold.  He was very impressed.  We chose a pain reliever that was not a narcotic.  Kemett didn’t move the entire time and did great.

One week later, we went to get stitches out and on the way home afterwards, Kemett used his fingers and reopened the wound.  Back to the ER we went.  This time the discussion was should we put more in because of scarring.  We told them about the drug we used last time and the doctor asked if we could try without medication.  I agreed and Kemett did amazing!  We had to see a plastic surgeon to get the stitches removed 7 days later.

The following day, Kemett tripped and busted his forehead open right before his PT session.  Back to Dell we went.  More stitches, no drugs.

Our kids have a high pain tolerance and I’d say Kemett definitely does, but he did cry both of these times, so I know there is something registering in there.

Not only have we  been to the ER but Kemett has been put under anesthesia 4 times.  The first three times he came out quickly, but last August it took him a while to wake up afterwards.  I was a nervous wreck and the anesthesiologist seemed nervous as well.  Anytime we go in, I talk beforehand on the phone with the hospital about risks for Kemett going under.  I then talk to the anesthesiologist at great length about what could happen.  We bring in our Medical Alert book that describes what could happen.  So far the team at Dell Children’s has been fantastic.  The head of anesthesiology has protocol for PWS that they must follow.

We also do all procedures in the hospital rather than an outpatient facility because he may need to be admitted.  Our pulmonologist writes letters to everyone involved on the risks that could occur to make sure this isn’t a problem.

Anesthesia Issues in PWS

Special Concerns

Please let us know if you have any questions!  Thank you for your support!

Love,

The Demands

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Kemett after he got his first stitches!

PWS Awareness Month-Day 27

Hey Everyone,

So after reading 26 days worth of posts you might be thinking- How can I help?  Well then this is the post for you.  Below are just a few ways that you can help our family:

  1. Call, text, email, facebook message: It is always appreciated to hear from friends just asking how we are doing- both about Kemett and just about ourselves.  Sometimes we may not realize we haven’t reached out in a while.  It is a wonderful feeling to catch up with a friend, even if its a few minutes.
  2. Ask Questions: I hope what you have figured out from this month is that Andrew and I are not afraid of questions about Kemett.  We’d rather you ask a question!
  3. Give us a heads up:  If you are going to have a party, just let us know the food situation and timing of things.  We just would hate to show up and be thrown off (although we are good at being flexible when needed).
  4. Be inclusive:  When possible, we appreciate people making an effort to be inclusive of Kemett.  Remember it’s not his fault that he has PWS or food allergies.  It’s nice to feel included on meals/treats.  Please ask us, if you have questions.  On the same hand, please let us know how we can be inclusive of your family.  It’s not all about us!
  5. Share blog posts and facebook posts: The only way we can educate is by people sharing information on PWS, research, your point of view, or our family.
  6. Walk with us: This could be in person or virtually!  Our virtual walk is on October 15, and we hope that you will join us in our #15forthe15th Challenge and support Kemett and his friends!
  7. Donate: Your time, services, in kind items or financially to our One Small Step Walk!
  8. Never feed Kemett– We will bring food for Kemett or know what you have before we come.  Since Kemett’s diet is so strict, we ask that you never offer Kemett food outside of what we have for him and his feeding times.
  9. Please follow our “rules”– These were in another post, but we would be happy to resend them if you just ask!

Thank you for your love and support!

Love,

The Demands

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PWS Awareness Month-Day 26

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.  Just about a month or so ago, he started to tell me what is going on in each book.  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.  Just recently we started going to the library and I cannot wait to take him all summer.
  • 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, to the point that I have to change the topic or transistion to another activity or we’d be doing this all day.  He also, recently, starting singing songs and enjoying music Andrew and I play for him.  He really likes Ophelia by the Lumineers and Seven Nation Army by the White Stripes.
  • 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: Now that he can actually maneuver through a playground, Kemett loves to go play.  He will ask to go on a walk or ride in his wagon to get to the playground.
  • School: As you saw from last week’s post, Kemett loves school.  I’ve been trying to explain to him this week that this is his last week of school.  It makes him sad because he wants to see his friends and teacher this summer.  At least I know he will be looking forward to starting school next year!
  • 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.
  • 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.
  • Daniel Tiger and Dora: Kemett does not get to watch much TV but when he does these are two 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.
  • 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, so I need to start making him some costumes!

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!  Tomorrow we will talk about How you Can Help Us!

Also, remember to wear your orange tomorrow for PWS Awareness month!  Take a pictures and let everyone know you are wearing your orange!

Love,
The Demands

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Kemett and Ginger


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Kemett Riding at RED Arena!


In it for Kemett!

Aqualad

PWS Awareness Month-Day 25

Today’s post is also from Andrew.

Why I Swim

I started swimming May 1, 2015 as part of Prader-Willi Awareness month. ,I like most dads, want to be a good example for my son, so I thought swimming for the month of May would be a good way to show dedication to living a healthy lifestyle. Diet and exercise are going to be very important for Kemett and it’s going be very hard for me to ask him to live a healthy lifestyle if I am not. I was dedicated to swimming for a month for sure.

Here I am over a year later and I am still swimming. I really feel I have gotten way more than I expected out of it. I feel like I have established a healthy life style and an exercise that I will be able to carry on for years, as an example for Kemett. I have lost over 20 pounds and feel very good about myself. I am actually very close to or faster than I was in high school (15+ years ago), which I think is a statement to my overall health. I also think I have received a vast amount of, what I would call, mental health benefits I did not expect to.

First, I feel like swim practice is very therapeutic. I swim for an hour and fifteen minutes, four to five times a week at 5:45 am. A large part of practice is spent with my head underwater with my own thoughts. I have internalized and processed many thoughts related to my son during this time. I think about him constantly, sometimes it’s how I can help him, or how I can support him, other times it is fear for his future, or concerns over challenges he will face. One of my coaches loves to say that “Swimming is about being comfortable being uncomfortable.” One of the thoughts I have in practice or even during races, as pain starts setting in, is that my pain is temporary. Kemett one day will have the pain of being hungry and that pain will never go away for him. This really drives me, not that the pain I deal with will be anything compared to his, but struggling and fighting through gives me hope that he will be able to as well.

I also developed quite a support network. Many people I swim with have asked about Prader-Willi Syndrome and have been very supportive. The triathlon team came out to our One Small Step 5k last year. I wanted to hang a flyer at the pool and next thing I know I have a large group of tri athletes and junior tri athletes at our 5k. They really upped the competition level from the previous year. Being a special needs parent can be very lonely at times and gestures like this mean so much to my family.

Finally, Kemett is very aware I swim. He has come to my meets and cheered me on. He acts very proud of me and likes to chant “go daddy go” and “Swim fast indoors/outdoors!” (Not entirely sure why he likes to specify if I am swimming indoors or outdoors.) It is very reaffirming that I am setting up fitness as an important aspect of life.

I don’t know if I will always swim, but right now it seems like thing for me to be doing. For my own health and as an example for Kemett.

For our virtual fundraiser, my #15forthe15th challenge is that I’m going to swim 15 miles the week of October 15.

Remember to join our event, and let us know how you will participate in this challenge!

Thanks for your support and tomorrow we will talk about Kemett!

Love,
Andrew

 

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Andrew ready for the backstroke!

 

Kemett watching Daddy swim!