Update on Porter

 “Porter Rockwell” (name some of the nurses called him sometimes) has been back home for a week now and is acclimating himself to family and home to the best of his ability. While in the hospital, he was observed every few hours by a clinical/research neurologist who determined that Porter needed to start a new medication to deal with spasticity in his muscles. When this boy gets crying, he stretches stiff like a surf-board and nothing is bending him. So we are hoping this medication (Baclofen) helps with that problem.

 Before leaving PC Hospital, Porter was re-evaluated by a lot of smart people who said, “I don’t know” to Thom and Abby quite a bit! In fact, several of the neurologists are not convinced what the problem really is! He doesn’t fit any mold that any of them are aware of. He is like a potpourri of little issues that don’t equal into one diagnosis…so the mystery continues.

Anyway we are finding some things out about Porter:

• He likes his mommy to hold him.
• He has no problem crying for 2-3 hours without stopping.
• He loves warm baths.
• He enjoys the battery operated massage spider on his back.
• He really likes Brinley’s high sing-song voice greeting him in the morning and reading him stories in the afternoon.
• He loves his daddy’s strong hands, especially when they rub the top of his head.
• He is now quite proficient at pulling his tube out, so he gets to wear fingerless gloves!
• He likes being rocked in the new chair from Great- Grand-pa/ma Bandley.
• He really likes car rides and feels safe and secure in his car seat.

Porter after his bath

In the meantime- and in the next few weeks-Porter will travel to various counties, visiting numerous specialists, who hopefully will assist us in our quest to give him the best possible future.

We also continue to be overwhelmed by the generosity, kind words and actions of many, many people.

We thank- and love all of you!

Grandma Cindy