Avleigh's Journey

Today Avleigh has a trial run for a Baclofen Pump. Baclofen is the medicine that she receives by pill to help with her high tone and spasticity. Yes, our baby that has restrictions and can receive nothing by mouth is prescribed a pill because her insurance will not cover it to be compounded. We’ve been making do… Any way, this trial was to see how she would respond to the Baclofen being administered directly to her spinal fluid rather than it having to go through her entire system before reaching the spinal fluid. This trial today started very early with Physical Therapy. They graded her tone and spasticity in all upper and lower extremities including her head and trunk. Then she was put under anesthesia for a lumbar puncture to administer the Baclofen. One hour later she again received Physical Therapy to measure the difference. These results began showing some improvement! We then let her wake a little more, waited 2 hours and did the Physical Therapy evaluation again. Although she did lose some head control her evaluation came out great. The representative for the medical equipment that was there said that she definitely qualifies for the pump. It will take some time to get it adjusted to the correct dose, but this will allow us to take away another oral medicine. The pump will be placed under the skin on the abdomen with a catheter to the spine. Depending on what her dose ends up being will determine how often the pump will need to be filled; typically every 3-6 months.

Most of you that follow her know that her motility isn’t working too well. The less medications we have going through her system the better. We’re praying that this change will help her to learn how to use her muscles, keep her more comfortable and make it easier on her GI system to function. For the first time in a long time we finally have some success!!!