PWS Awareness Month- Day 31

Hi Everyone,

This is a huge thank you to everyone who joined us for the month!  Whether you read a couple or stuck through the entire month, we thank you!  I am always humbled and amazed when I hear family, friends and acquaintances say they read our blog.   We appreciate all the questions and for everyone who shared the blog, photos, bought shirts, donated, did a #15forthe15th challenge, etc.  Spreading awareness is key and y’all have made that happen!

We also hope that you have learned more about PWS and more about Kemett.  We will try to keep you updated throughout the year, but life gets busy.  If you have questions during the year, please ask us!

We also hope that you will join us at our One SMALL Step Walk on September 30th.  If you are not in Austin, feel free to virtually walk that day to support Kemett!

I want to give a shout out to some of the #15forthe15th superstars!  First, my mom walked almost every day this month and walked well over 100 miles!  Andrew swam 15 miles in one week!  Kemett did something active every single day, and we will continue to build on that with him.

And not to toot my own horn, but I completed Whole30 yesterday.  This was something I kept putting off, but am so happy I did.  I was in a bad rut from being pregnant and nursing.  I feel so much better- my energy is up, I’m sleeping better, I can focus, and my anxiety is down.  I am in the reintroduction phase for the next 10 days to see what my body doesn’t like.  I got a glimpse into Kemett’s life because I couldn’t eat a lot of what he can’t eat, and it wasn’t too bad.  I had to prepare my own meals and take them with me, just like I do for Kemett.  Life now a days, makes a lifestyle change and living with allergies so much easier.  Believe me, there are days I wish he could just be an easy kid and we could just stop and grab food.  Or that he was just an easy PWS kid with no allergies and we could just stop and grab food.  But we’ve figured out our system and it works.  Whole30 made me appreciate what Kemett goes through.  It also made me feel better, and although I won’t be continuing the full whole30 diet, I did learn a lot about what my body needs and will be continuing that!

Thanks again for following our journey!  Here is the link to our personal fundraising page!

Love,

The Demands


PWS Awareness Month-Day 28

Hi Everyone,

Below is Andrew’s post about Why He swims from last year!  Enjoy!

 

Love,

The Demands

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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PWS Awareness Month-Day 26

Hey Everyone,

So after reading 25 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. Be patient: Our lives are crazy busy with school, therapy, homework from therapy, clinical trials, and two working parents.  We try the best we can to get together for playdates, but it may seem like months before we can make it work.  We want to see you, for Kemett to have friends and live a normal life.  It’s just hard sometimes to get out of the house or we are exhausted and that will be our only time to just stay home and rest.  We know it’s hard to come over to us, but we really do appreciate when you can make it to our house.  Just be patient with us as we schedule and reschedule these get-togethers.
  3. 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!
  4. 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).
  5. 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!
  6. 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.
  7. Walk with us: This could be in person or virtually!  Our One SMALL Step walk will be on September 30th, and we hope that you will join us to support Kemett and his friends!
  8. Donate: Your time, services, in kind items or financially to our One Small Step Walk!
  9. 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.
  10. 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

PWS Awareness Month- Day 25

Hi Everyone,

Today’s blog is written by Andrew.


I wrote from the Dad perspective last year and I am doing the same this year. I will try to keep from repeating myself too much.

First I would say having Kemett is scary. I worry about him all the time. I want him to have a long, healthy, happy life. I want him to fulfill the dreams he has for himself.  I want him to have friends and I don’t want him to feel different or weird.

My first job then is to keep him healthy. I believe we have been able to provide him with everything he has needed so far.  It has not always been easy, but we have been very blessed to be in a place where we have not had to say “no” very often. It’s scary when the health care reform debate includes life time and yearly caps to what private insurers provide. Health care expenses are so distorted by our insurance system that paying any services without insurance becomes very expensive very fast. I also worry about the limited options of care that will be available to him as an adult. Much of the debate revolves around preexisting conditions, and if they should allow insurances to discriminate against individuals with preexisting conditions. When he’s an adult I don’t know what options are going to be there for him. If insurance can discriminate against he will most likely be forced onto Medicaid. This isn’t the worst thing, but the current budget is slashing Medicaid.  It’s not just Kemett’s care, it’s all kids and adults with PWS. They all deserve access to quality care. Without it, I worry about their abilities to have Long, Healthy, Happy lives.

As for fulfilling his dreams and having friends, we are doing what we know we can do. We raise money to fund research that may one day allow Kemett to live independently, we participate in trials when we can and we attend conferences. We try to give Kemett every opportunity to be around his peers. He attends school and has frequent play dates. There are a lot of variables beyond our control but we are trying the best we can to give him the best opportunities that we can.

Kemett will likely out live us, so we will not always be able to care for him.  As such you have to have a lot of faith in other people. Kemett may always need support of other people. He may not be able to live on his own or even take care of himself. We are fighting to give him an independent future, and believe it can be a reality. That is why we fundraise for The Foundation for Prader-Willi Research. That is why we spam your facebook pages every May and that is why we hold a 5K in the fall. The support we have received in doing this has been overwhelming. We cannot thank the other people in our lives enough. Thank you for donating, thank you for reading, thank you for asking questions, and thank you for liking our posts. Your support has given us lots of faith in other people. Once again Thank you!

Love,

The Demands


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PWS Awareness Month- Day 23

Hi Everyone,

Today we are going to talk about the Foundation for Prader-Willi Research!  Andrew and I found them when Kemett was about 6 months old, and immediately decided this is where we wanted to fundraise and donate personally to.  We, along with our amazing co-hosts, are proud to say we have raised over $190,000 in the past two years with our One SMALL Step Walks!  100% of this money goes to research.

When we found FPWR, we found an organization that gave us hope for Kemett’s future.  We also got the added bonus of finding our PWS Family.  At our first conference in 2014, we knew we were in the right place.  It feels so good to be around amazing people who want the same things for their kids and who get it.  They get what you are going through because they are going through the same things.

Two years ago, my walk co-host and I hosted the FPWR National Conference here in Austin.  What a privilege it was to work on this conference, and have everyone come to your home city.  Last year I served as Community Leadership Chair for FPWR which works to connect new families to mentors, resources and provide them with pertinent information through webinars and on private facebook groups.  And last June I became full time staff as the Development Assistant and am now the Donor Relations Manager.

We wouldn’t be doing all of this, if we were not passionate about FPWR and the work that they do.  Below, I have attached their 2015 Annual Report so you can read all about where their funding comes from, the research programs they funded this year and more!

A few years ago there were no clinical trials happening in PWS, but now because of FPWR and everyone who has generously donated we have multiple trials going on, as well as groundbreaking research!  FPWR has also adopted a 5 year research plan that will help accelerate research and development of treatments for PWS.

This is why we educate, spread awareness and bombard you with information all year round.  This is why we ask you for money every year.  It’s because we know they will find something that will allow Kemett to live independently!  Something that will curb his hunger, help behavior and other aspects of PWS.  It’s because the more research is done the more we can understand this incredibly complex genetic disorder.  Please take the time to read the links below to learn more about FPWR.

5 Year Research Plan

2017 Funded Projects

FPWR Annual Report

Thank you to everyone who has supported our One SMALL Step Walk and FPWR in the past and future!

Demand One SMALL Step Fundraising Page

Please let us know if you have any questions!

Love,

The Demands

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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 21

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 3 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.  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.

We have seen some anxiety creeping up.  It’s happened a couple of times and it was hard to get him past what he was upset about.  He also gets anxious when we go on a trip, and usually says he wants to go home.  We have done social stories which is just a little book with what our trip will be about.  This tool has been great.  We’ve also started doing yoga 1-2 x a day, deep breathing and progressive muscle relaxation.  I want to give him all the tools we can so that he can help calm himself.  I know one day he may need medication, but I’d like to teach him mindfulness techniques before we get to that point.

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!

Love,

The Demands

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PWS Awareness Month- Day 19

Hi Everyone,

Today we are going to talk about school for Kemett!  This was a question asked to us several times leading up to May.

First, Kemett has been in school at our local church for the past two years.  This year he started going 4 times a week because I started working.  He’s in a 3’s class and is doing great.  Being around typical kids has really pushed him.  We have been working very hard on social interaction with peers this year.  Kemett has grown immensely in this area.

We have had some hard decisions to make, as we were trying to decide what was best for Kemett next year.  We decided to get him evaluated for early childhood education at our public school.  We had put this off because we liked his current school.  We decided to do it this year just to see what they had to say.  Andrew and I’s big thing was to make sure Kemett was put in an inclusive classroom because we want him to be pushed!  Kemett went through a long evaluation process- 2 in person and multiple observations.  His evaluations came back and he was evaluating at 4 years 1 month age!  He needs help with adaptive skills- toileting and washing hands, and of course his gross motor skills are lower.  But our boy is smart!  Which we already knew.

Up until this point, the school district has housed all the kids in one elementary school, and not the one he’d attend.  They have changed that rule for next year and kids will attend their home schools (which is a huge plus for us!)- we want him to be at the school he will attend for the next 7 years and it’s right behind our house.   His school district also does not have an inclusive program, which has been a reason we didn’t want to send him to public school, but this year they are making this a new program and starting with Kemett!  We are thrilled!

We had our ARD in early May, and it went so well.  We feel so supported and heard.  Kemett will be in general ed 4 hours and SPED 2 hours a day.  He will eat his lunch in sped and work on the items in his IEP.   We got the accommodations we wanted, and there will be no food in the classroom.  They will secure lunch boxes as well.  They will let us know about school parties and birthdays.  This will be an experiment.  We have decided that Kemett will need to learn to be independent in life, so he will participate in birthday parties at school.  It makes me incredibly nervous, but as you’ve read this week, Kemett is understanding his body more and more.

We have loved his current school, but it was coming to a point where we knew public school would prepare him better for kindergarten and beyond especially with the supportive services he needs.  It is a bittersweet move for us.  His current teacher has been amazing and done so much to educate herself about Kemett and accommodate him in her classroom.  We will miss our tiny school!

School is hard for me as a parent because I worry about Kemett, I advocate for him almost daily, and talk with his teachers almost daily about what is going on.  We troubleshoot different problems, we text and email.  I know this will be how it goes until he graduates.  It can be stressful, exhausting, frustrating, and satisfying when we get something to work.  I get by because of the times when I get to hear Kemett spell his name, or find out he entered a group and asked to play with them.  These are things I thought he might do, but have been worried about since he was born.  Kemett is showing us that he is so smart, a fast learner, has a great memory, and is social.  We just need him to be social with his peers, but I see it happening!  This is all because of his teacher, his speech therapist, and the work we do at home (especially right now his PRETEND study which we will talk about in another post).  I just hope that next year his new peers grow to love him as much as his current peers do.  I know he will miss his friends at his school, but I do hope he will make new ones quickly.  I hope he will be included by the other kids and asked to play.  I hope they will be patient with him as it takes him a little longer to process things.  I hope the parents are as understanding and amazing as the parents at his current school are to us.  There are a lot of fears for both of us entering this new phase.  We will be navigating this new world together, and hope we are accepted with open arms.  Kemett lights up a room with his hugs and smiles, and hope that this continues for years to come.

Next year Kemett will go 5 days a week, which for a working mom will be helpful, but I will miss our Fridays where we didn’t have to rush anywhere.  We are going to enjoy our summer because next year I will see less of my sweet Kemett.  I do know that he will be in good hands and will be learning and growing everyday.

We are so very proud of the boy he is becoming.  He is thoughtful, kind, loving, compassionate, a feminist, and smart!

Thank you for following us on our journey and for your support!  Please let us know if you have any questions.

Love,

The Demands

 

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PWS Awareness Month- Day 14

Hey Everyone,

Happy Mother’s Day!  Here is a post from last year:

So today I will be talking from my point of view as a mama and caregiver. There are so many aspects of of being a mom of a child with PWS that I could talk about, but then I’d probably have a novel.  Next week we will have an entire post on how you can help and support us.

Not only is this PWS awareness month, but this week is Eosinophil Awareness week.   I’ve been trying to think of the best way to express my feelings on all of this- a rollercoaster is probably the best.  In the past week, we have had hard days and wonderful days and some mixed together.  As you have seen during these blog posts is that Kemett is doing great!  Yes, he is behind in milestones and not as strong as his peers, but from what we were told, he is beating expectations!  I am so proud of him, everyday, for what he is accomplishing and doing.

This does not mean that I don’t worry.  I worry every day about him and how we are doing as parents to raise him.  Last week he had two hard days at school.  I was so upset, and frustrated because I did not know what to do to make things better.  I also never know if this is typical toddler behavior, or are we on the verge of major behavioral issues/food issues, etc.  Monday after school, I found out he had a fever- well that solved part of the mystery.  When Kemett is exhausted or getting sick, he tends to act out more and get emotional.  Wednesday after I found out he ate a part of another kids sandwich, which contained allergens, I thought I was going to lose it.  We work so hard with him on not sharing, special tummy etc.  I texted my PWS mom friend and mentor, and she talked me off the ledge.  She assured me that typical kids do this and that her son had been having a hard day too and might be getting sick.  But we never know.  We both agreed that it is scary, the not knowing.  It’s hard to get too excited when things seem to be going well, because something always happens that makes it hard for you to get comfortable.

On days like those, I feel lonely.  I stay strong every day for Kemett, and try not to think about the future.  But as he gets older, it’s hard not to think about.  I know we will deal with them as they come and figure it out as a family.  I think my biggest fear is Kemett and our family being excluded, or losing our support systems.  You may think, what? We’d never do that, but you don’t know.  Or if Kemett’s food seeking/behaviors get to be out of control, we may stop coming around.  I’m not sure what I’d do without our support system.  They keep us going.  They may not completely understand, because that’s hard but they try.  They ask questions, stay on top of the latest with Kemett, and ask how we are doing.

I am also lonely because being a mom is lonely, and then top that with medical issues, it makes it hard to make friends.  I’m sure most people think we are flakey, or are never available to play or get together.  And the latter is true.  Kemett has 7 therapies a week, sees 12 specialists, has to get weighed and measured monthly, blood work every other month, and right now is in school 2 days a week.  When we have a day off, oftentimes, I just want to stay home and let Kemett play and be free!  I’m often too exhausted to go to Mom’s nights out, and just want to get in bed after Kemett is asleep and catch up on a show with Andrew.  I rarely get to see my own family or have play dates with my neices/nephews, so please try not to be offended.  I want to connect with other mom’s and build a village.  My village right now is family and PWS families.  They get it. I want people we meet to ask questions and want to get it, but I know it’s a lot.  I know it makes some people uncomfortable so they just ignore it or avoid us.  For me, I will be better able to build a friendship with someone if I know they are trying to get it and keep Kemett safe.   There are definitely people out there who try to get it, and are empathetic, but then we go back to the beginning of them probably thinking we are flakey.  Please be patient with us.  Please ask questions and listen when we are asking for something or telling you about something.  As you can all see, we are so open with what is going on in our lives, and past that we are pretty fun people to be around.  Just ask our friends and family.

I want to end this on a positive note.  We are so thankful for the support, comments, questions of all of you reading this blog.  We know you are taking time out of your lives to learn about our son and keep up with what is going on in a big way.  That means more than you will ever know.  This week we will blog about Kemett’s diet, rules we have in our house around food, and how you can include Kemett in gatherings/playdates, etc.  Next week we will have a post on how you can help and support our family.  If you ever have questions, please reach out.  Or just reach out to see how we are doing.  It brightens our day.

Kemett is amazing- I could not have asked for a cooler, smarter, brighter kid.  I love seeing him grow and learn on a daily basis, and I have no doubt he will go on to do great things.  We will talk about FPWR next week and the research they are doing to make these dreams possible for Kemett.

I also want to throw a shout out to Andrew, the best partner, husband, dad that a wife, partner, mother could ask for.  He loves Kemett more than anything, and does everything he can to help him grow, learn about cool music, pop culture, and all the things that make Andrew amazing.  He is teaching him to be a kind, caring, loving person.  He and I are different people, which is good because I need someone to help me stay rationale and not worry too much.  He is my rock and my support and I’m not sure what I’d do without him.

Thank you as always for your support and for reading our blog!  Below are pictures from a family vacation we just took.  Tomorrow we will discuss EoE, so please let us know if you have questions!

Love,

The Demands