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.


Penny said...

Good for you for concentrating on her as a blessing! Children ARE a blessing!

Laura said...

It's so good to hear from you, I think about you and Ava everyday.
I love the picture of her, she's such a doll. We definately have to focus on the blessings they are!

Julie said...

You have such a positive attitude. That is going to help her so much in the future.

Every minute counts.... said...

I do love that picture of Ava. She has gotten so big!
I agree with you, focas on the good, she is very much a blessing. And you know what your right, the good thing is maybe with backup you won't have to fight quite so hard to get her what she needs. And the ABA that was suggested, if you can find someone to do it, it has made a world of difference with Abi. She just is pleasant more times than not with other people. She is always agreeable with us anyway :) (haha)


Tes & John said...

Kim I am so glad you posted. I always look for an update on the precious girl. We are truely blessed and your daughter is blessed to have you! I would love to still have my mother. Take care and don't stress about a job. Easier said then done right?
Lila's mommy

Nancy said...

She is a doll, even though she may be a handful. :) I love seeing an update and that she is able to receive more services. You guys seem to be in very good hands.

Love you :)

Heather said...

Oh how I love that picture. I think it shows every side of your beautiful grandbaby.
she sounds so much like Caleb at that age, I'm sure she will always be a brat and a ton of fun, but most importantly a true blessing, even if it is sometimes disguised ;)

Tara said...

You're right - she's such a blessing. I'm glad Dr. Mervis had a lot of suggestions for you - and glad the therapists are putting it into place. She's such a beautiful little girl!!!

Amy said...

She is so cute, I just love her to death. And getting big!!!As far as the Dr. M results, sounds about the same as Avery at 29 months. Don't worry too much, at 29 months of age it is really impossible to predict what the future really holds for Ava!

Kerry said...

What a great pic! I'm glad you got some useful info from Louisville. Sometimes you find out something and a lightbulb goes off. I'm glad to ehar the update :)

Katie said...

you really need to post more photos, i hardly recognised this beautiful, grown up little lady :)