Update #118 from Rob and Linda

Hello again, hope all is well with you who read this blog!

Do you know how you know when people care about you and are keeping you in their thoughts and prayers???
You get calls and e-mails saying "hey, when are you going to update the blog???"
You run into friends on the street and after the usual "how are you ?" they say, "by the way
the last update to the blog was over a month ago!!!"

So here we go!

March ended up being a mediocre month for Steve. It seems it was a 1 step forward 2 steps back kind of period. We noted Steve had only 11 out of the 31 days classified as "good days". April has been much better!

Walking is becoming a concern due to his weight gain. We have found Steve is very "out of shape" and can only walk short distances supporting his weight. He does much better with a supportive walker, but tends to push it out ahead of him and hang by his arms. We are still battling with the insurance company over a Mat Table so we can do more stretching and are steadily increasing the weight Steve uses on the leg exercise machines at the gym. We have done some research and tried out some machines, and should have an Elliptical machine very soon, which will get Steve the cardio exercise he needs so badly. We also met with a nutritionist to discuss the journey we have been on regarding his eating. We went from not being able to eat anything, to figuring out what he could safely eat, to (now) controlling what he eats! She had some good ideas and verified that his weight gain is due to lack of movement and metabolism changes due to his injury. In any case, we are all working on this issue! Steve's neurologist does not want him using any artificial sweeteners, so that adds a little wrinkle. If anyone has any ideas to share, we would appreciate them.

What is really noteworthy recently are his gains in speech and left arm/hand use. These gains keep us focused and help us overlook the walking issues. Jennie has had Steve reaching up over his head for tennis balls and Katie (Steves' OT) has been doing some "electro-stimulation" on certain muscles with good success. Steve spontaneously used his left hand to stop a fall (by grabbing a grab bar in our home) just the other day. He can now grasp items and hold them with the left hand while he uses the right to take them apart; for example, changing the batteries in a flashlight. He now takes the first bite of his power bar using the left hand/arm to get it to his mouth! Today at the gym he stated that he could feel his left arm helping to lift the weight on the overhead press for the first time.

The G-Tube area is now a thing of the past and though we pronounced it healed on Feb 28th, in fact March 30th is when we no longer had to cover it with a dressing. To say it is nice not to have to worry about it any longer is an understatement!

April seems to be a better month so far. We have 9 of the 18 days marked as "good". Although Steve came down with what Beth called a "Noro" Virus on the 3rd, It only lasted about 24 hours and he is back to his old self again. Seems the waitress at the restaurant we ate at also had the same issues. We always wondered how Steve's body would handle routine illnesses and are relieved that he appears to react "normally" to what is going around.

At the end of March and early in April, we had Steve use a platform cane when he walks, with support from Rob on one side and one of the therapists on the other. Steve can do about 100 feet before he gets too tired to continue but at least we have a starting point. We are concentrating on Steve supporting his own weight when walking. We had a very encouraging day last Friday when we had Steve put his left arm around the shoulders of his PT and had Rob support his right arm. Steve went 139 feet in this manner as we walked from the PT to the OT area.

As previously noted, Steves' speech is steadily getting better. During one speech session, Stacy had Steve tell her the difference between two things. This makes Steve think up a response and then say it. One such response was an answer to the question "what is the difference between Baseball and Basketball?" Steve answered after thinking for about 20-30 seconds, " in baseball you play with 9 players and play on a field, with basketball you have 5 players and play on a court". This was stated in a clear and concise manner and blew us away. Steve answered 9 other such questions with clarity and good voice volume. Obviously this was a "good" day, but since then we have noticed Steve attempting to voice first. If that fails, we have him try to spell the word out loud instead of writing or air spelling it. Today we called Uncle Don, who has a big birthday tomorrow (actually today, since we're posting after midnight), and Steve was able to wish him an early happy birthday on the phone!

Steve loves to "swim" and we are looking into some options to make this happen more often. The other day we tried out an underwater treadmill at a therapy facility, and are checking out a therapeutic pool at a local YMCA. We are also searching for something he can wear in the water to help him stay upright and feel more secure. We hope to have this part of his therapy in place by the time warm weather arrives!

A huge thank you to Steve's friends, who continue to include him in things they do. Where he goes, we go, so they have to put up with us, too! For example, this weekend we went to a monster truck show and a few weeks ago we went to a Shinedown concert! The emotional boost he gets from such things is priceless. He also loves to text, and checks his phone constantly, so thanks to all who keep in touch with him in that way.

The Great Uncle Dave (along with his wonderful assistants) is planning the third annual golf outing for Steve. It will be on June 26th, and info will be mailed/posted soon. You can't imagine how thankful we are for your support of this event.

Thanks for reading this, and for keeping Steve in your thoughts. We truly treasure your friendship and support, and will try to keep this more up-to-date!

Love,

Rob and Linda