Observations After Stem Cell Therapy

It has been 8 weeks post Damien's Umbilical Stem Cell Therapy. We (and medical professionals: Doctors and Physical Therapists) have noted improvements in Damien's Cognition, Communication, Sensitivity, and Vision.

COGNITION

In early March, Damien attended physical Therapy and hyperbaric therapy in Ft Lauderdale, FL. Therapists in both locations mentioned (without our input) how "aware" Damien was. He would smile when recognizing the staff and cooperate when asked instructions. We also had dinner at Franco & Vinny's with Paula's cousin and her husband. Both commented that "Damien is really with us". It was obvious that Damien was being attentive to our conversation.

When dressing Damien, the nurse has Damien place his right hand above his head. He tells Damien to "fix his hair". This way, Damien does not interfere with the nurse. I was getting Damien ready for bed and he immediately placed his hand above his head and started curling his hair.

At Damien's annual visit, he tracked Dr Maushmi Sheth (his neurologist) as she entered the room. Dr Sheth was speaking with Damien and reached out to touch his hand. Before she reached Damien, he jerked his hand back. Dr Sheth was impressed because Damien had never interacted with her in any manner during prior visits. Dr Sheth mentioned that these two actions were "good qualitative events" supporting improvements made since receiving the stem cells.

Dr Aria Dayani, Damien's regular doctor, made similar comments about Damien's awareness during a general visit we made before going out of town. Dr Dayani was pleased with Damien's tracking and cooperation.

Damien's cognition is also visible in his communication and sensitivity.

COMMUNICATION

  Damien has been communicating by using his fingers: 1 finger means "Yes" and 2 fingers mean "No" - Yes and No fingers are a constant. We do not change finger meaning just to ensure consistency. He listens to books on CDs before he goes to sleep at night. In this case 1 finger might mean "a cowboy story" and 2 fingers might mean "a Sherlock Holmes" story. If he does not show us any fingers, we interpret that as he is not interested in either choice. Before the stem cells, his response time was slow and deliberate. Since March, his response time is immediate.

We take Damien to a movie every Friday afternoon -early showing. Last week he watched John Wick 3. The nurse mentioned that the movie was full of shooting and chaos. That evening, Paula asked Damien if the movie he saw that afternoon had a lot of shooting. Damien immediately produced 1 finger. Another time, we took Damien to Dallas for a Functional MRI. After the test, Paula was waiting for me to retrieve the car. She asked Damien if the test was "good" (1 finger) or "bad" (2 fingers), Damien immediately showed her 1finger and a big smile.

We have purchased an Eye Gaze device to help with his communication. It will require a few days of training for us to learn how to set it up for Damien. He will also require training. At our first introduction to the Eye Gaze, the salesperson stacked our pictures on the left side of the screen to accommodate Damien's current head positioning. She asked him a question that required "Mom" as the answer. Damien looked at the picture of Paula and the computer replied MOM. Paula has waited 20 years for that and it blew her mind. The computer did the talking but she knew that Damien was the origin. We have high hopes for the Eye Gaze.

SENSITIVITY

Sound

Damien has developed an obvious startle reflex since the stem cell administration. If there is any sudden loud noise (no matter what pitch) Damien will "jump" in reaction to the sound. [The jump includes jerking both arms and both legs at the same time.] He does this if I suddenly let the bed rail drop-making a sharp clang. I sit next to him on the couch when we are watching TV. He has made the startle response when I coughed. We have a bird that attacks its reflection in a window by the couch. If it is quiet and the bird starts his attack (flying into the glass and pecking), Damien will jump.

Touch

We dress Damien in a padded brief. In the past, we had to check the brief condition to know if it needed to be changed. Lately, if the pads are wet or even damp, Damien will move his legs to show his irritation. The leg movement stops as soon as he is dry.

VISION

Very quickly, after the stem cell administration, we noticed that Damien was holding his head in a normal position (not so much to the left). He developed a forward-looking gaze. The left eye is starting to become more parallel to the right eye. It is not a constant change but it is a big improvement.

Damien did some tracking before. Now, he will follow you as you walk across the room or from one side of his bed to the other. Medical professionals have commented how well he is tracking. He now watches TV for long periods of time - not a short inquiry gaze. He will watch programs other than soccer and /or cartoons. One afternoon, we were watching an action movie. I sat down beside Damien with the mail. As I went through the mail, Damien would look at the mail and then return his gaze to the TV. He interrupted his watching TV, looked at the mail and then re-found the TV to continue watching.

In the last month, I took Damien to two concerts: Lucinda Williams and Joan Baez. Both concerts were at the Tobin Center in San Antonio (the old, refurbished Municipal Auditorium). It may be because of the lighting differences (dark auditorium and well illuminated stage), but as soon as they started singing, Damien found them and watched closely.

We are keeping a log of observed improvements in Damien's behavior/reactions. If we can demonstrate a 10% improvement, Damien will qualify for a second administration of Umbilical Stem Cells.

Footnote: This Friday, Paula and I will take Damien to Gruene Hall in Gruene, TX to see Ray Wylie Hubbard in concert: Up Against the Wall Redneck Mothers; Screw You, We're From Texas; Conservation With the Devil. It is a small hall so Damien should get a great view of the concert. (One scene from the John Travolta movie Michael was filmed there).