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 30

Hi Everyone,

Thank you all for joining us so far this month!  Today I wanted to quickly talk about Kemett’s first clinical trial.  We participated in PRETEND- through Case Western University.

Kids with PWS often have a hard time understanding pretend and fantasy place, socializing with peers,   Kids with UPD (the subtype Kemett has) can often have autistic like characteristics.  They aren’t sure if kids should be dual diagnosed yet, or if there are other reasons causing these characteristics- like low muscle tone, slower processing, etc.

We were lucky to get picked for the trial, and for 8 plus weeks, I met weekly on a call with a researcher and learned different aspects of pretend play and socialization.  I then had homework and worked with Kemett throughout the week on different things.

The first thing we started with was learning how to pretend play and building a story.  Kemett has some familiarity with toys and knowing they can become other objects, so we weren’t starting from scratch.  We sit down daily or more than once daily, and play.  I start by picking a story line (which has to be different every time we play because we are trying to help him be creative and learn new stories, and learn to make up new stories), then we pick characters, and I ask him what happens first, then next, etc.  When we are done I show him that we had a beginning, middle, and end to the story.  Then he picks a story and we play it out.

Our next step was to try this with a therapist or another adult, and then on to school.  His speech therapist went to school 1-2 times a week and worked on this with him.  By the end of the school year, he was playing other kids stories they were making up.

Play is super important for kids because it helps them learn many things in socialization and it gives them a safe space to play out emotions, etc.  So you learn to greet others, take turns, what emotions are, non verbal communication, initiating play with peers or in groups, having a conversation, characterizing things (what things are red, what makes noise), putting things in chronological order, etc.

We also worked on behavior some- so progressive muscle relaxation when upset, deep breaths (which we were already doing), and planned ignoring (so when he gets upset, I let him know that I will talk to him when he is calm).  I will say that Kemett’s behaviors are typical 3 year old at this point and getting better every day.  The planned ignoring works wonders!

We worked on a spreadsheet with goals and markers for things we need to continue to work on- initiating play with peers, with groups, reciprocal play, conversation, emotions, non verbal communication.   This summer I will work on initiating play with peers and conversation, and then in the fall move to the others.

With group play, we will start at home going over all the steps he needs to take to play with friends alone or in a group.  So, how do we greet them, ask them to play, ask them what they are playing, turn taking, etc.  We will start with me modeling it, then role playing, then with stuffed animals, then probably a therapist, and then play date with familiar friends, etc.

I will say this is a lot of work, but we have seen so much improvement this year with someone facilitating this play and social activity with him.  Kemett is such a social kid, and what I discussed with his researcher and therapists, is what is holding him back at this age is that kids are faster than him, both physically and with processing.  They may have moved to a new topic and Kemett is still on the last.  So we are working on these things.  Also, kids his age aren’t as patient to sit with him and play.  We have found that kids even a year or two older are more likely to be patient with him and play.

Over the weekend we went to a playground and he played with a little girl for a long time.  She was probably around 5 years old.  It was just so nice to see him socializing with kids he doesn’t know.

We are so lucky that we were able to participate in this study.  We are lucky there are clinical trials going on in our community, with not just medical intervention but also clinical.  Socialization at a young age has been proven to be incredibly important for our kids as they get older.  We learned so much during this time period, and Kemett has grown so much.  We cannot wait to continue working with him and helping him build his skills! I know that was a lot, so please let us know if you have questions!

Love,

The Demands

Kemett on his last day of school- not feeling great.

 

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 24

Hi Everyone,

Another popular question we received was how is Kemett at being a big brother.  Mabel is now 9 months old, and moving around, stealing toys, and so much more!  Kemett is a great big brother.  He asks about his sister, talks to her, and plays with her.  He also gets upset when she takes a toy or is in his space when he’s playing, but I think those are pretty typical things.  They are really cute together and you can tell that he cares about her so much!  He says things like, I love you Mabel Grace or asks how she is doing.

We are looking forward to see how they grow together as they get older.  It was really important to us that Kemett had a sibling.  Someone to play with, to push him, to be there for him and vice versa.  We also wanted there to be someone who will be there as he gets older and we may not be able to help him if something happens to us.  I know that is pretty heavy and we hope that responsibility does not fall on her shoulders completely.  It was not an easy journey to get here, as we talked about last year, we did IVF for Mabel because this was so important to us.

We don’t know what life will look like going forward.  Up until this point, our life has revolved around Kemett- his diet, his therapies, doctors, etc.  And they still do for the most part, but he has also had to get used to my attention being taken by Mabel for eating, etc.  We want them both to know that they are important to us, and equal.  We don’t want Mabel to ever feel like Kemett is our priority and that she is just stuck or unloved.  I hope this makes them both stronger, more patient, flexible and loving people.

Mabel has been such a great addition to our family.  It has been a different experience for sure!  In many ways, it has been therapeutic and healing.  I had a VBAC for her because the thought of going into an OR again gave me anxiety and brought up too much from Kemett’s birth.  I wanted to rewrite the story.  It was not easy, but I would not change this for the world.  Mabel also was able to breastfeed immediately.  This has been an amazing experience after exclusively pumping for Kemett for 9 months.  She is loud!  She can scream and cry like none other and that took a lot for us to get used to.  At the same time, she can be quiet and very easy going.  She is fast and strong and is already standing independently.  She’s on the move and getting into everything.

One big thing is that she does not have food allergies.  This has allowed us to have lots of talks with Kemett about his allergies, his special tummy and being safe.  I was anxious about this at first, but I think it has been a good thing.

We know that life is not always easy for a sibling of a child with special needs.  My hope is that we are able to make them both feel special, let them be their own person, and grow together as a family.  We will take it one day at a time.

I was talking to a dear friend recently about this very subject.  We feel very complete right now with 2 children, but I said I worried about who Mabel would go to for support if Kemett couldn’t be that person.  And my friend said, how do you know that he won’t be that support for her?  How do you know there won’t be a treatment soon that will allow him to live independently or go to college, etc?  My friend has one brother, and she said they go to each other to commiserate about their parents and are there for each other if something happened to a parent.  And of course they are friends.  I hope that Kemett and Mabel can have a normal sibling relationship.  I hope they can get from one another what I’ve gotten from my siblings.   I guess I shouldn’t give up that hope before we even know if it can truly happen.  There are so many unkowns in our future, so I will go back to living one day at a time and doing the best we can raising these two beautiful children!

Please let us know if you have any questions!

Love,

The Demands



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