Wednesday, May 28, 2008

Ava News

Gosh, the last month has been so busy I don't know where to start. Let's see...Ava destroyed my cell phone, my car rudely demanded a new fuel pump, the vacuum and coffeemaker both went kaput, and I have gained yet another five pounds. We also observed the anniversary of Charlie's suicide. Most importantly, Ava, Laura, and I visited Dr. Mervis at the University of Louisville.

Finances being what they are, we decided I would drive us to Kentucky. We loaded up the minivan and off we went. Ava, however, wasn't nearly as excited about a road trip as we were. We had to stop and let her walk around about every hour or so. She got so upset in her car seat that she kept pushing at the restraints and sliding her butt around. Consequently, she rubbed her bottom raw. Did I ever mention that Ava has spina bifida occulta? In most cases SBO isn't problematic, but Ava's "tail" protrudes enough that when friction is applied she actually gets sores similar to the pressure sores that nursing home patients get. And they hurt!

Things improved greatly once we were able to get off the road and spend some time at Dr. Mervis's lab. Ava did fairly well, especially the first day of testing. She was really excited about having a new group of women to manipulate!

Sadly enough, my granddaughter is not a child prodigy, she doesn't place at the top of the WS heap. Instead, she now has a new set of labels. Ava. WS, ODD, ADHD, SID (now SPD). According to the good doctor, at 29 months of age, Ava functions about as well as a 14 to 15-month-old child. She has sensory integration issues, especially oral and tactile processing problems. Dr. Mervis recommended brushing, joint compression, and ABA--applied behavior analysis. She feels that Ava's behavior is getting in the way of her learning.

On the bright side, new diagnoses mean additional services, which was my motive for orchestrating this trip. I don't want poor Laura and Justin to get railroaded at their IEP. Early On has already begun implementing Dr. Mervis's suggestions, and for that I am so grateful.

My granddaughter is a brat. And she's beautiful, funny, cuddly, and so very loved. Often I prefer to ignore Williams Syndrome and concentrate on the blessing I call Ava. I love her so much.

This is why I go to work every day...