2013 reCOOPERate video

Cooper and Assistive Technology

Cooper has recently had some exciting advancements with assistive technology. Assistive technology is any device that helps those with a disability achieve a function they are otherwise unable to do. We have been working in conjunction with the school district to help Cooper get some services at home and incorporate technology as well.
We've had some wonderful specialists evaluating Cooper and bringing over devices to try, along with a device that Coop's mom had seen another child use called an Eye Gaze Communication Device. This device is activated when the person looks at a picture on the screen and then makes a noise such as a sound or a spoken phrase. It can be used for many things: to teach someone how to control their eyes better, to teach someone the sounds associated with an object, or even to help give someone a voice to interact with others. For example, a person could look at a picture of a cup on the screen and the device could say "I would like a drink."
Cooper had a trial with the Eye Gaze device and did very well. After a series of questions, a speech therapist programmed the device to say some familiar phrases when Cooper looked at colored boxes on the screen. Cooper seemed to quickly learn the cause and effect of looking at the boxes. Then the therapist began to put pictures of objects on the screen that made a noise when Cooper held his gaze on them long enough. (a dog, a cat, a train, etc.) We quickly noticed that Cooper wouldn't look at the object when the background was white. As soon as the background was changed to a color he would look at it and activate the sound.
Once he began responding to the objects with color behind them on the full screen, the therapist made the picture smaller and smaller, increasing the difficulty for Cooper in having to find them with his eyes. Each time the picture had a white background he didn't look at it. As soon as the color background was added, he looked at the picture and the associated sound was activated. When the picture got to 1/4 it's original size, all the therapists in the room, his mom and his nurse cheered. Then, the therapist said she wanted to try 1/8 the original size and if Cooper could activate that, then he would prove he has the capacity to learn language. She put up a picture of a cat 1/8 the size with a white background and he didn't respond. She changed the background color to purple and we heard "Meow!" Cooper had found the image at 1/8 the size. The speech therapists were impressed! You can see Cooper doing this in the videos/ picture below.

Cooper has also been able to activate an iPad at his recent evaluations. He was shown that when he touched it, music would play. He reached over and touched it to activate the music repeatedly. It was so purposeful that all the therapists looked at each other and said "Did you see that?" There was no mistaking that Cooper wanted to hear the music! He even smiled when he made it come on and moved his head around to see the iPad.

We are still in the evaluation process and developing a home school program for Cooper, but things have been very encouraging! He will be getting an iPad loaded with various programs for him and the Eye Gaze Communication Device very soon on a trial basis. Therapists will also be coming over to help teach him how to use the devices and teach his parents how to program them too. 

STEM CELLS 2012

As a result of the funds raised at reCOOPERate 2012, Cooper was able to receive stem cell treatment for the 2nd time last fall. He completed a series of 3 treatments over the course of 3 weeks, each treatment was 5 vials of stem cells. 

This is considered a large amount and we are hopeful Cooper will have some good results. They typically begin to see results of stem cell treatments 3 months after, which would be February for Coop. Results can continue to be seen up to a year after treatment as well. 

So far this time around we haven't seen any big changes yet, but there have been a couple small things happening. One thing is Cooper has been turning his head to the right more, farther and purposefully. This might sound like not a big deal, but it's quite difficult for Cooper. Since his injury he has had a powerful reflex called ATNR that continually forces his head/ neck to the left. He sometimes strains to turn his head to the left so hard that he begins to cut off his airway and gasp for air. This has made his neck muscles on one side very strong and on the other side very weak. This keeps him from being able to hold his head up in the center. (you can see in the picture that his head is propped with a pillow on one side due to this) This has also affected his vision as his eye muscles have also been trained through this reflex to look to the left.
In the past, Cooper has struggled to turn his head to the right or even use his eyes, but after last year's stem cell treatment, Cooper's vision improved drastically and he began consistently tracking to the right. We saw him looking to the right with his eyes only, but recently he's been turning his head with it. He turns to a sound or to look at something on his right side. He does this quickly and purposefully in a way we haven't seen before. He seems proud of himself when he does this and often smiles :o)

This along with other small changes can be the building blocks to new function and can add up to make bigger changes. We are hopeful we will continue to see him progressing since in the past this wasn't the case... we'll be sure to keep you posted on Super Cooper! Thank you for your continued support and prayers in helping Cooper achieve a better life!

Cooper continues to work hard at Polfit

Cooper has been working hard at Polfit off and on since his intensive session upon returning from China. Below he's working in the "Spider" on the Gazelle and keeping his hands on the handles all by himself :o)

 Cooper has also been working on the MotoMed Bike at Polfit with both his arms and legs. It really helps keep his range of motion and increase his circulation in his legs. Cooper really struggles with circulation in his legs when he sits or stands up. He will need to return for Hyperbaric treatments soon to both help this problem and many more.

Cooper has also been going through many digestive tests. He has had some issues with reflux and may have some food allergies so we'll hopefully be getting to the bottom of that soon. We'll post more about that soon!

January 2012 update...

This update was written by Cooper's older brother, Cody:
We are always on the lookout for a change in behavior as a result of the stem cell treatment and being that I do not live at home much, my chances to see a change are diminished. Everyone had been telling me that he is much more alert than before, but I had not seen it for myself until something noticeably miraculous happened while babysitting Cooper sometime in January of 2012! I was making his dinner in the kitchen and the second I walked into the room where Cooper was laying, I saw a sudden movement out of the corner of my eye. After investigating, I found that this quick move was both his head and eyes tracking my every step. He followed me from the foot of his mattress to above his line of sight. I was so in shock at the occurrence that I further experimented to see if he could repeat the accomplishment………and he DID!...........3 times in a row!!!!!!! I showered him with praise and the look on his face seemed to tell me that he knew what he had done. His face broke out with a patented Cooper smirk while maintaining perfect eye contact no matter where I moved my head. Your prayers and dedication to Cooper’s strength are bringing continuous tangible results. Thank you to everyone who made the trip to China possible!!!

Cooper Progresses at Polfit!

For years we've been intensely working on stretching Cooper's arms out. With all of his spasticity (tight muscles) it seems the arms were the toughest to combat. About 4 years ago he got an internal pump placed that releases muscle relaxing medication and we positioned it so that it would affect the arms as much as possible, but they still became contracted (lost range of motion). About 2 years ago Cooper had an additional surgery where his nerves to his biceps were cut so that his arms could be stretched out. This was a difficult decision because this is a permanent procedure, but in the end we felt that he needed something drastic to occur if he ever had any hope of using his arms. Contractures can also be permanent and not doing something would be just as limiting, after all... who could use their arms with their hands stuck up by her face? By cutting the nerves it would take away a large part of the pain associated with stretching his arms out and we were told his other arm muscles would pick up the functions of the biceps once they were strengthened so we went ahead with the surgery. We spent the next year following the surgery stretching and bracing his arms with no improvement.

Then a wonderful combination of therapies proved successful. Following Cooper's stem cell treatment he began receiving Hyperbaric Oxygen Treatments at Advanced Hyperbarics and a month of intensive physical therapy at Polfit. Among other goals, Polfit worked intently on stretching Cooper's arms. Heating, massaging, stretching and bracing. Measurements were taken at the beginning of the month of therapy and at the end. Cooper had a 10 degree improvement in each leg (as they are also slightly contracted), but the real improvement was in his arms. Cooper's left arm - the tighter arm - had a 25 DEGREE IMPROVEMENT in range! Cooper's right arm had a 45 DEGREE IMPROVEMENT! 4 years of surgeries and therapy had produced nothing and then this! It has to be this combination... The cells gave him the building blocks, the HBOT enhanced their effect and POLFIT did the work to produce results!

Cooper continues to attend maintenance therapy at Polfit and show progress. Just this week he was on the Gazelle at Polfit in their Body Weight Assisted Support System. His arms and hands were so relaxed he was able to lightly grasp the handles on his own... this was never possible before. His legs were moved through exercises at the same time and he smiled throughout the workout. He enjoys moving and is becoming more and more involved in his rehabilitation. Polfit says this is the trend they see among their patients: cognitive improvements come along with the physical and patients are able to do more to help in the recovery process.

Cooper also goes through therapy on his home program. With help from his wonderful nurse, Lyly, Cooper's arms are massaged and stretched throughout the day, braces are applied and he continues to ride his Quadriciser. He is schedule to attend another month of intensive therapy at Polfit in the new year!

1-Month Post Stem Cells Update

We began to notice changes in Cooper in China and though they were subtle, they seemed to be noticeable to many others since we got home. He began making different and more sounds in China and that has continued at home. As a little bonus, Cooper has been super happy! He squeals with delight often and even his laughs sound different and sounds seem more complex and multifaceted. More and more we feel like he's trying to talk. The other night we went out to dinner with Coop and he was laughing so much and so loud that we had to move our table!

In China he also began holding his arms down more and they seem much looser. Before they were often tight and he held them bent up. His arms have gotten even looser since then and we've even been able to decrease his muscle relaxer dose. Since then he's also sometimes held his hands in mid-line, which is something he's never done before and a sign of normal brain development.

His vision has improved a lot! I thought he was seeing OK before, but the way he looks at things now it's as if he's seeing them for the first time. He looks around with big, wide eyes, makes eye-contact more quickly and holds the gaze longer. He smiles at familiar faces or when he arrives at a familiar place. He used to only do that when he would come home or hear his mom and dad. He is looking up and around more at his environment and that's also aiding in his head control. His muscle relaxing dose is so high that it effects some things he can control, like his head. We hope to keep lowering his dose so he can continue to regain some control of that.

Cooper is much more alert and cognitive of what's going on around him. He watches and listens to people, TV, music, etc. and responds by turning to the sound, making noises, smiling or laughing. We talk to him differently now as a result because we feel like he understands us more. He's a part of what's going on and enjoys stimulation. These pictures show him riding his in Quadriciser at home looking up at his fish toy that has fishies swimming by and plays music. He watches this toy with more interest now as well.

Since China, Cooper has begun attending hyperbaric oxygen treatments (HBOT) at Advanced Hyperbarics and intensive physical therapy at Polfit Wellness. HBOT has been shows to mobilize stem cells so we feel that the work done at Polfit in conjunction with that will help to continue to draw out improvements in Cooper. Research has shown stem cell treatments have an ongoing affect on patients for 6-9 months and brain injuries tend to take longer to see results. We will continue to send updates and are so thankful for everyone's continued prayers and support!

Goodbye China! Zai Jian!

Well, our time in China has come to an end. We have met some wonderful people from all over the world and learned a lot about this country. It's been an adventure to say the least! We will never forget the special bond we shared with other patients and their families - all coming together here out of hope!
We are so grateful to Beike for being a leader in stem cell treatment and offering hope for Cooper! The staff has treated us wonderfully and we couldn't have gotten through this month without all of their help. Everyone cares so much for Cooper and wants to best for him. We may have starved without the translators!
Cooper wore his new Chinese outfit for his last day in Qingdao. He is here with his lovely nurses, Lucy and Melody. Melody taught us how to sing "Twinkle Twinkle Little Star" in Chinese. We return home to begin attending more therapy to see if we can put Cooper's new cells to work. We will continue to post his journey on the blog. Thank you to everyone for your support!

Cooper's Schedule for week of 9/5

The finish line is in sight!

PT

Cooper continues to get massaged and stretched at PT twice a day. He particularly seems to like when Owen rolls his shoulder around. You can see the grin he's giving Owen in the picture.
He's doing a little better with head control too!