Oh, Yes. We are Still Here.



Grandma Kim & Ava at a volleyball game

  Ava continues to grow and change. Although she has had the typical viral illnesses over the past few months, her major issues have been stable. Nothing serious has happened, such as adverse changes to her heart or digestive system. She struggles a bit at school, but continues to progress. Her vocabulary is quite good and she is able to converse fairly easily with anyone she meets. "Grandma Kim, do you like octagons? Are they your favorite shapes?"

It's so scary when your child (or grandchild, in my case) receives the WS diagnosis. Part of you wants to believe that your child will be the exception, that maybe someone made a mistake. Part of you worries that your child will be the worst-case scenario. Usually, however, things are never as good or bad as you might expect. I would say that Ava falls somewhere in the middle. She exhibits many typical features of the classic WS profile. Yet, in many ways, she is so unique. She is loving and kind and I wouldn't change a thing about her. She is such a joy.

My goal is to update this blog at least quarterly. Since Facebook became the go-to place to meet up with fellow WS families I kind of let the blog fall to the wayside, but I remember back in those dark days right after Ava's diagnosis I found so many precious friends through blogs. Those friends were so helpful and supportive. My hope is that others will find us the same way. I keep this blog open to all for that reason.

I hope to hear from all of you. Happy Spring!

~Kim


Ava at Red Barn Photography




Christmas 2011




Grandma Friend and Ava on Easter 2012





Ava after her Spring Concert performance at Oakview Elementary



Ava's Growing Up

Our little one is not so little anymore. Ava turned five years old in December, 2010. She is beautiful, loving, kind, and quite the comedian! Her health is problems have all but disappeared, thank goodness.

The past year has been difficult due to Ava's parents splitting up. I am her paternal grandma, and my son is the noncustodial parent.  Consequently, I don't get to be involved in Ava's day-to-day life like I used to be. It's an uncomfortable situation, to be sure, but it certainly makes me appreciate every moment I spend with Ava. I love her so much.

Isn't Ava getting to be a big girl? She has changed so much recently.

Healthwise, Ava is doing exceptionally well. Her last cardio visit was a rousing success. In fact, the doctor feels that only yearly visits are necessary. Ava's SVAS is so mild that surgical intervention will probably NEVER be necessary. Isn't that great news?

Ava's language skills are really improving. Granted, it is still hard for others to understand what she is saying, but we can decipher many, if not most, of the things she says. When she's hungry, she tells you. If she is tired, she tells you. Ask her if she is cute, and the answer is "Totally, duh!"

Ava's true passion is music. That child starts singing the minute she awakes in the morning, and she doesn't stop. It amazes me how many songs she knows. She woke me up Sunday morning with a big, smacking kiss and her rendition of the Barney song...I love you, you love me. What a sweetheart she is.

Ditto

This "Sunday Secret" touched me. Check out more at http://postsecret.blogspot.com/ if you are feeling courageous.

Overdue Update

Ava Mae is growing up.

Ht: 36.5 inches

Wt: 27 lbs, 2 ounces

She is at the 9th percentile for weight, and the 24th percentile for height. On the regular chart, not the WS chart.

Her speech is coming along, slowly but surely. She is developing a nice little vocabulary. Mamma, Bampa, cheese, keys, ball, eat, hungry, thirsty, in, on, yes, no, play, Justin, uncle, Lizzy, Stacy, and on and on. She loves Hannah Montana, Lawrence Welk (no kidding!), and music. Her favorite character is Barman, also known as Barney!

Healthwise, Ava has had a fairly uneventful winter. She is in school now, five mornings a week, which has exposed her to lots of new germs, but remarkably she has made it through with just a few viruses that she has been able to fight off. No hospitalizations, thank goodness.

Ava is just a little ray of sunshine. I hope to have some new pictures to post soon, and I promise I will! I have been very remiss in my blogging. It's been a long, depressing winter and my energy levels have been low. Hopefully spring will recharge my batteries so I can feel human again.

Happy Easter, everyone!

We Are These Women!

A profound truth sent along by my friend, Liz. No wonder our friendship has lasted since high school!

Happy 3rd Birthday, Ava!

Make an on-line slideshow at www.OneTrueMedia.com

Ava is such a big girl now. It's hard to believe that 3 years ago today we were anxiously waiting to greet our beautiful girl, never imagining the struggles she would endure. No matter, I wouldn't trade her beautiful soul for all the perfection in the world. To me, Ava IS perfect.