It has been exactly 1 month since Frank's stem cell treatment.
We are seeing slight improvements in motor control and cognition - nothing dramatic yet.
What we have noticed is the following:
His head moves more freely and he turns it now to either see where I am, or to watch our dog eat a treat, or to look in the direction where the nurses are talking; he seems more attentive as to what we are doing and occasionally wants to know what is going on; he will initiate "conversation" by asking questions or telling what he wants to do (something he has seldom done before); when sitting in his chair with his feet dangling, he can slowly move his legs back and forth.
All these changes seem rather subtle, but he definitely seems to have made some progress. Sometimes it is hard for me to judge, but when others point out differences that they see, it gives me confidence that changes are occurring.
We saw his neurologist last week (he hadn't seen him in 3 months) and he noticed a difference right away. He thought that Frank had a "sparkle" in his eyes, that his face looked brighter, but mostly he moving his legs back and forth impressed him. He now wants Frank to go to a rehab facility in Philadelphia for extensive physical therapy to further improve function.
We also saw Frank's pulmonologist a couple of days ago. He feels that we can start a slow transition toward decannulation (getting the trach removed). Since Frank still has a lot of secretions (partly due to the trach) we need to go slow. So, throughout the day we close the opening of the trach with a special plug that forces Frank to breathe through his mouth or nose. He doesn't tolerate it all the time and when we see him struggle we take the plug off. The idea is to get his muscles build up again, so that he will tolerate it more and more.
I am anxious to see what the next few months will bring.
?Thinking Positive?
alex
We are seeing slight improvements in motor control and cognition - nothing dramatic yet.
What we have noticed is the following:
His head moves more freely and he turns it now to either see where I am, or to watch our dog eat a treat, or to look in the direction where the nurses are talking; he seems more attentive as to what we are doing and occasionally wants to know what is going on; he will initiate "conversation" by asking questions or telling what he wants to do (something he has seldom done before); when sitting in his chair with his feet dangling, he can slowly move his legs back and forth.
All these changes seem rather subtle, but he definitely seems to have made some progress. Sometimes it is hard for me to judge, but when others point out differences that they see, it gives me confidence that changes are occurring.
We saw his neurologist last week (he hadn't seen him in 3 months) and he noticed a difference right away. He thought that Frank had a "sparkle" in his eyes, that his face looked brighter, but mostly he moving his legs back and forth impressed him. He now wants Frank to go to a rehab facility in Philadelphia for extensive physical therapy to further improve function.
We also saw Frank's pulmonologist a couple of days ago. He feels that we can start a slow transition toward decannulation (getting the trach removed). Since Frank still has a lot of secretions (partly due to the trach) we need to go slow. So, throughout the day we close the opening of the trach with a special plug that forces Frank to breathe through his mouth or nose. He doesn't tolerate it all the time and when we see him struggle we take the plug off. The idea is to get his muscles build up again, so that he will tolerate it more and more.
I am anxious to see what the next few months will bring.
?Thinking Positive?
alex