Thursday, April 11, 2013

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

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