c'mon baby, do the locomotion

The past couple of weeks at Cardinal Hill have been wonderful!
Lance has shown great improvement in almost all areas. There are several coma recovery scales that have been used to measure Lance's consciousness. He is now measuring a 4 on the Rancho scale. Some might say that he is awake... I still have faith that there is more emerging to come.

I mentioned before that during speech therapy, not only are they working towards vocalization, they are working on all kinds of communication. Lance has a mouse that can plug into a computer, its a huge mouse. with a baseball size trackball. And left and right color coded buttons. When you ask Lance to roll the trackball up and down, he does. He can also roll is from left to right. When dad ask him to right click, he follows that command. One day last week, he moved a card on a solitaire board using the mouse. He will also mouth not only single words, but phrases. Such as God is Good. and I Love You. He can count from 1 to 10. So even though he can't move the noise up and out, most of us can read his lips.
Yesterday, Ted and Holly Gilbert came to visit him. Ted taught Lance how to play guitar several years ago. Ted, Lance, Brock, Dad and Kevin Angel were in a band called Joyful Racket. Ted played several of their old songs, and when he played How Great is Our God, Lance mouthed almost every word!

After continuous casting on his arms, botox injections and strenuous stretching, I think that the tone has been broken in Lance's arms. He is able to stretch them out almost straight. His left arm still doesn't do as much as the right. But his hand will squeeze yours. and sometimes he will rotate his shoulder while sitting up. Last week, they began pool therapy for Lance. The warm pool water has really helped in many areas. Lance loves to swim, and we get to get in the pool with him.

A couple weeks ago Lance was eating bites of pureed chicken. However, something has caused his swallowing reflex to decrease. We think this may have been caused by the Botox that was administered to the muscles in his arms. In some rare causes, Botox has been known to temporarily paralyze muscles that are involved in swallowing. So, until that effect wears off, we will be only giving him ice chips.

Back in March and April when we were at home, Lance had great strength in his core. He was able to help us stand and sometimes he even wanted to continue to stand. Because of seizures medication and medicine to help with the tone in his arms, that core strength has been lessened over the past several weeks. However, last Tuesday the therapist decided to see how long he could sit on the edge of the exercise mat with his feet on the floor. They were watching their watches closely, hoping he could make it to 30 seconds. Lance sat perfectly still, with zero support for 30 seconds, then a minute. then two minutes. Then... as more of the staff gathered around, he continued to sit. There were calls being made to the insurance company and all eyes were on him, as he sat upright for 20 minutes!

The other big thing is the Lokomat! The Lokomat is a robot.. sort of. Lance is strapped into a harness and is suspended over a treadmill. More straps secure his shoulders and legs, all of this is hooked up to a computer which assist Lance in locomotion therapy. The machine lets Lance move his legs in a walking motion, but will kick in to help if he gets tired. Its a lot like the FES bike he rode when he was in Atlanta. When they tell him to kick harder, or bring his knee up higher, the sensors on his legs show that his muscles are working.
The first time, Lance walked for 15 minutes, 1421 feet. The second day, 26 minutes. and 4373 feet.  I hope all of you can open this video!

Lance is working hard... so, please keep praying for him!!

-chelcee

3 More Weeks...

So, Lance has been at Cardinal Hill since May the 11th. He has been making great progress and the insurance has approved for him to stay 3 more weeks! 

Lets start with Speech. 

  -They are awesome. He likes Gretchen. and she is very patient and is as determined as we are that Lance will communicate!

  -When he was at house back in March and April, I was giving him ice chips and he was doing well with chewing and swallowing those. As well as some bananas. Once he had the seizures, he had to go back to a nothing by mouth status until we were sure his swallowing was up to par. So, a couple weeks ago, he had sort of a modified-modified barium swallow. His swallow was in fact, good. However, he manipulation that he needed to get the food to the back of his mouth needed some work. They advanced him to a pureed diet. Within a couple days, he was back to taking bites of mashed up fruit. He even tried eggs for breakfast and chicken for lunch. Sometimes, with medicine timing, he gets very sleeping and its hard to keep him alert for mealtimes. 

  -On Monday, Lance met all of her goals for the next week. He can visually choose between 2, then 3, and now 4 items based on their function. We, of course know that Lance knows that a cup is for drinking, a toothbrush for brushing and a phone calls people. However, getting him to look and hold his gaze on that object is an accomplishment! 

  -One day last week when I was with Lance was the first time that I felt like I knew exactly what he was trying to say. I have felt like Lance has understood what we have been saying to him for months now. But, the other day when I knew exactly what was hurting, it was a completely overwhelming feeling! Even though some of the meds make him very groggy, he has been doing an excellent job at consistently answering yes/no questions with one finger or two. Its wonderful to be able to know if he wants to listen to more music or watch tv or go outside. :)

  -Today when Brock was with him, they were trying to figure out what kind of mouse would work the best for him so he could work a computer. Lance tried a mouse laying on his chest and then a handheld mouse, to move cards from one side of the screen to another. I'm pretty exciting to see this tomorrow. 

  -Lance has also been working on lots of tongue and lip exercise, which will help him in mouthing words and forming sounds. One day with therapy is was able to count to five on his fingers and mouth one through five! He will also make some new noises, like clearing his throat. 

Occupational/Physical Therapy.

  -I'm sure most of you know, Lance has a lot of tone in his arms. He isn't contracted, but he is very tight. They casted his arms and legs when we were in Georgia, that seemed to help quite a bit. However, when he gets sick (bowel obstruction, sodium imbalance, seizure) the wearing of the splints goes out the window. At Cardinal Hill, they started casting again, after his 2nd round with botox. More range was gained with this casting than before, so he know has bivalves again. He doesn't like them much, but we tell him, they will help him in the long run. 

  -The medicine they have put him on act like muscle relaxers. Which greatly impairs his ability to stand. When we were at home, I was moving him from the bed to the chair without any trouble because he would stand straight up. Now, he has some trouble with that. He will stand in a standing frame, where he is strapped in securely. They have also put him in a lift to simulate walking. I haven't been there to see this, so I can't really explain it very well. 

As always, we can begin to express the kindness and support of our community. We continue to feel this every single day. When we walk in to the post office or the grocery store, the prayer sayers shine through. 

Please keep Tom Ginn in your prayers. He has has a tough week, but from what I understand is home from Cleveland Clinic. Also, the Bertram family. Ann Dudley Bertram passed away on Saturday. 

-chelc

A Ride to Remember: In Memory of Zach Ruble 06.04.11

There will be a 8, 17, 30, or 50 mile loop. Plus the added, "Ruble Challenge" this year. The Ride begins at the Mason County Track Facility in Maysville, KY on Saturday. June 4th at 8am. 


To pre-register, go to Limestone Cycling League


Sponsored by the Limestone Cycling League and Kentucky Gateway Museum Center in Maysville, KY. All event proceeds go to the Zachary Ruble Memorial Scholarship Fund administered by the Hayswood Foundation.  


Find it on Facebook. Zach Ruble Memorial Ride

                                                                                                      

The first Zach Ruble Memorial Ride - "A Ride to Remember" - was the brainchild of Kyle Pitakis. Kyle wanted an event that brought together people with the same mindset that his friend Zach Ruble had ... a love of nature and respect for the outdoors. His vision of a small group bicycle ride in memoriam for a lost friend turned into a much larger and more inspired event than anyone could have anticipated. The turnout and show of... support that first year made for dreams of a larger event each year to follow.

Lance was able to participate in the Zach Ruble Memorial Ride the past two years. Of course, this year he will be cycling on a stationary bike at Cardinal Hill instead of in Maysville. But I know that if was able, he would be there. Lance shared Zach's love for nature and respect for the outdoors. He loved exercising and pushing himself, and I know he would be trying out the "Ruble Challenge".

So, if you are around Maysville this weekend, go out and ride a few miles.Do it for Lance. Do it for Zach. But most importantly, do it for yourself. 


~chelcee