A Little Inspiration

My mom posted this on the PVL site. Here it is for my readers:

Hello everyone. I have been a member of the PVL group for 18 months now, since my son was born. I remember the day in the NICU when they told us he had PVL and would have difficulty walking, talking, seeing, basically everything. It's been a tough year and a half, but we've made it though and I wanted to share our experience from yesterday with you.

Yesterday we saw the neurologist. It was our shortest visit ever, 20 minutes total. She was so impressed with Gavin's improvement since our last visit six months ago. Since then we've continued PT, OT, and Craniosacral Therapy, and we've started Speech and Hippotherapy.

At our last visit, he had a very tight right hand (kept it tucked in), could not sit unsupported (his high tone would cause him to fall back), was having feeding problems (partly due to previous reflux and yeast infection in his esophagus), etc. She was ready to put him on muscle relaxers. However, I think Gavin left her speechless yesterday. She bicycled his legs and they were not stiff as they used to be. She sat him up and he helped her. He did some nice side sitting. She stood him up and he supported his weight. She handed him her flashlight and he took it with his right hand, then he pretended it was a phone and talked to it on his ear. She watched as he commando crawled away from us and attempted to climb a step. He babbled to her and said "hi" and "bye". It was an overall positive visit and, with that, a nice change of atmosphere.

I see hope in my son. He keeps me motivated to help him. He wants to explore and learn, he just needs extra help. To any new members, my advice would be to constantly stimulate your baby. Whether it be with toys, reading, singing, music, petting animals or textures, massage, anything you can do to keep them thinking. And, of course, therapy! I think this all helped Gavin to be as good as he is now. I know he still has a long way to go, but I am no longer afraid of how it will turn out. I always see hope in Gavin's eyes and our adventures continue.

Keep your heads up,
Michelle
(Gavin, 18 months, PVL)