The Baclofen Pump Trial

Monday was a long day. We made the trip down to the childrens hospital for the baclofen pump trial. Crew was a real trooper and responded well to the medicine. Again, this kid amazes me with his ability to "roll with the punches". When they injected the baclofen into the space around the spinal cord he didn't even flinch. The injection is much like getting an epidural except they use the EMLA cream at the site to numb the skin and it doesn't make your legs go numb;) Immediately after getting the baclofen he slept for almost 3 hours. Then after he had something to eat they got him up on his feet. He was real weak at that point and we waited another hour or two before they had him walk.

The doctor said he already has contractures. I didn't know:( The baclofen pump would help reduce spasticity which in turn helps fight against future deformities. There are risks involved and Crew is a candidate for the pump because he did respond to the medicine. It's up to Carl and I to decide if and/or when he gets the pump. There are risks involved: infection, overdose, withdrawal if catheter becomes kinked or torn.... The doctor wrote some goals of what we would want to accomplish with the pump. One goal was that he would improve his walking with an assistive device.

These big decisions are hard and its a matter of prayer for us to know which way to go.

On the other hand, Crew is not a candidate for the Selective Dorsal Rhizotomy at this time. He has too much underlying weakness.... meaning he uses his spasticity to his advantage, to help him walk. If they permanently took that spasticity away, he would be too weak to walk. They did mention that he could be a candidate for the SDR sometime down the road.

We finished the day off with eight botox injections in his hamstrings and gastrocks. Dr. Rehab injected more medicine this time. Crew was very cooperative. I don't know how he does it. I love my little man:)