Kool-Aid Playdough

Today William's Developmental Therapist brought stuff to make kool-aid playdough!! Here is the recipe and some pictures. Enjoy!!

Kool-Aid Playdough

• 1-2 packets of Kool-Aid
• 1 cup flour
• 1/2 cup salt
• 2 tablespoons cream of tartar
• 1 tablespoon of vegetable oil
• 1 cup of boiling water

In a large bowl add all dry ingredients and mix well. Add the oil and boiling water to the mixture and mix until it becomes very firm. It should be cool enough to handle after a few minutes of stirring. (It will last a long time if refrigerated in a plastic bag.)

William takes a moment to think about this.

He decides he's in and helps stir!

Rollin Rollin Rollin

Playdough toys and a Cookie Monster Car

Mr. Potato Head gets a new head an a hair cut.

A Mr. Potato Head Masterpiece!

What are we making next?

Tasting the kool-aid playdough.

Thanks Brittney! The kids had a blast!!

Power Chair

Yesterday we took William for his first Power Chair Evaluation at Shriners Hospital for Children in Chicago, IL. All things considered, William did ok.

Our appointment time was at 10 am, so William's day started out earlier than normal so that we could complete his air way clearance routine (breathing treatment, 20 minutes of his smart vest & cough assist) and run a feeding. William is not a fan of getting up early and with a little over an hour of travel, by the time we got there William was ready for a short nap. We answered some questions about William's abilities and then moved him into a Power Chair.  He started crying immediately after we placed him in the chair.  Initially we made the mistake of taking William off the vent to try out the chair. Although respiratory wise he was fine, he was upset that we changed his environment so dramatically so we gave him the vent back. He calmed down, but was still not happy about being in a new chair, in a new environment with new people around. During the evaluation he showed interest in the control buttons and even pushed the joy stick a few times on his own. We did a short lap in the hall way of Shriners and then headed back to the room to discuss the next steps.  Once parked, William fell asleep in the Power Chair.

Next we are going to get a Power Chair brought to our house to borrow and use to practice with William. We are confident that William will be able to learn to use a Power Chair! Stay tuned for practice videos.

William learning to use a Power Chair

William in a using Power Chair for the first time

April 2013 Updates

I thought I would share some updates and pictures of what the Whiston Family has been up to lately.

William in his blue TLSO

Juliet at TLSO Appointment

Most recently, William just got has first TLSO (Thoracolumbosacral orthosis). It is a brace used to correct the curve the spine from scoliosis. In December William had an x-ray of both his spine and hips.  The x-rays have been seen by Williams MDA (Muscular Dystrophy Association) Orthopaedic Surgeon, his non-operative Othopaedic and Physiatriast doctors.  They are all in agreement that William's spine and hips look good! I had previously been told by them not to be surprised if the x-rays showed some curvature.  So I took this as great news!! I was told that there are no studies that have shown that the TLSO will prevent scoliosis. However his physiatriast and physical therapists recommended we get him a TLSO sooner rather that later.  I of course agree I would most defiantly rather be proactive rather than reactive whenever possible. We are going to trial it out and see how it goes.  I am curious to see if it will help him sit in his wheelchair for longer periods of time and tolerate feedings in his chair better. I am also curious to see how it will help with his independent sitting.   







Lately we have been reading books with the kids before bed. I usually sit with William, acting like his human bobby so that he can sit up and turn the pages with us. We take turns alternating between Juliet's and William's books.  William usually is described as a patient and easy going boy, however when it comes to his books this is not always true. When it is time for a Juliet book, he shakes his head no and tries to close the book.  

Debbie Whiston (Nema) reading with Juliet and William before bed

Earlier this week we went to the DuPage Easter Seals for a Assistive Technology Evaluation. 

William with his "talker"

About a month ago, William's speech therapist rented a Springboard Device for us to practice with using with William. I like to refer to it has his "talker". William of course being the techy that he is instantly loved it. First we worked with the book Brown Bear Brown Bear, but he soon learned that there is more to the devise than just reading Brown Bear.  He found the medical section and got everyone to laugh by saying "I need a band-aid" over and over. His day nurse tells me that often says "help" "stop" "working" when she is catching up on her charting.  (William of course does not need help.)

So back the the evaluation, I was really worried that William would not interact with new people and just put his finger to his eye and assess them and the situation, but he did well.  He worked with them for a good hour showing them what he can do with the Springboard device we are renting and his iPad. They also trialed the NOVA Chat 7 device and the iPad mini with the TouchChat App. The hour seemed to be his limit. At about that mark, the therapist needed to adjust some settings and I made the mistake of letting him play with his iPad while he waited.  Well of course when it was time to work again and I took away the iPad, William got upset. He repeatedly pushed the stop sign saying "stop" and then when she hid that symbol he found the "I don't want to" button and navigated back and forth from the home key so he could say it over and over.  And when he still did not get his iPad back he shook his head back and forth to say no. At that moment I was so proud of him! He communicated three different ways what he wanted. Two of which were with a device that is brand new to him! Their assessment was that William will succeed and learn any device or app that we select for him and that his understanding and use of combined language and navigation is actually further than they would have expected for his age. Way to go William!!

William enjoying an Orange Sucker

While we are on the topic of speech, we have started to give William some suckers to work on some oral motor skills.  He loves them!! 
Some of you remember that William used to love his pacifier when he was younger. Unfortunately after his trach and vent, he gave it up.  I was quite sad when he refused to take it, I knew that it helped his oral motor strength and helped with swallowing. (I even tried to trick him once and give to him while he was asleep. He of course woke up, took it out of his mouth tossed it and stared me down.) It is funny really, most parents want their children to give up their pacifiers at about that age.


When his speech therapist first started to work with William after his trach and vent he would not even let her close to his mouth. He now lets her touch the inside of his mouth, he sticks out his tongue and he actually likes his electric tooth brush. This is wonderful progress! (I am wondering what he will do if I rub sucker on a pacifier.) 

Juliet and William

We have also been spending more time in our front room, looking out the window.  William likes to watch the neighborhood starting to come out this spring.  He especially thinks it is funny if I go outside and wave to him from outside.  I think I even got a wave out of him a couple of times!

Juliet and William

Cautious optimism: My visit to the University of Washington.

When Melanie and I decided that we would put our resources towards finding a treatment for MTM, we sought out the people that were working towards the shared goal.  Today I learned that the team of researchers are working tirelessly towards a goal that I once believed would never be accomplished. I am now excited at the possibility that one day we will beat this disease.

Where There's A Will There's A Cure was started to promote research.  Our family and friends dedicated themselves to raising money and awareness.  In under one year we were able to raise nearly $60,000.00 towards this goal. (If you want to meet some of the great people that have donated time to this cause go to the Will Power page at www.will-cure.org)  I had the opportunity to present $50,000.00 to Dr. Martin Childers in order to continue research of gene therapy.  In visiting the lab and meeting with the team, I came away with a wealth of new knowledge.  I thought I would share some of what I learned with you.

1.  The groundwork.
In listing to the oral history of MTM gene therapy, I was struck by the amount of time and effort that has gone into all of the work that has gotten us to where we are today.  The first lesson was that the Frase Family put in more WORK than most people understand.  When I use the word work, I am referring to time and effort.  I have watched Melanie work tirelessly to raise every cent that she possibly can, yet we have not had to find scientists and doctors to conduct the research. Prior to today I did not grasp the amount of effort to that came in the decade prior to William's birth.  The presentation made it clear that 10 years ago there was no framework in place.  I write this because I was truly shocked at the amount of time that has been dedicated to our common cause.

2.  UW Medicine.
The second thing I took away from this meeting was the dedication and excitement of everyone on the research team. In meeting the entire team, one could clearly see that each person is excited about the work and results. They believe they will be successful. They truly believe they are on the doorstep of a treatment.

3. The "wow"
Dr. Childers presented his colleagues with data from tests. As graphs and numbers appeared on the screen, two scientists gasped and said "wow". This reaction was the single biggest verification of Dr. Childers work. Clearly the early testing has gone well. While early results do not guarantee anything, I can say I left excited and optimistic, yet cautious.