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.

Finally, after many years of shame and discontent, I am a proud, hopeful AMERICAN.

My son, Dominick, and I have canvassed neighborhoods trying to get out the vote. We hung out at the Democratic Campaign Office and soaked up the palpable excitement. We displayed our campaign buttons, yard signs, and bumper stickers. Dominick has literally worn out his Obama t-shirt, for which he was nearly denied entrance to Laura's grandparents' home. Essentially, we lived and breathed this campaign. In return, we have renewed confidence in our country and our leaders.

I feel honored to have participated in this long, hard-fought, unprecedented, and historic election.

God Bless America!

Kaput

Things have been out of whack around here. Nothing too serious, but we did have one fatality:
THE COMPUTER. In order to post I have to sneak around at work or head to the library. It's just crazy, because in the last couple of months we have lost a living room chair, a camera, the computer, and the fuel pump on my car. Seems like when it rains it pours.

On the bright side, Ava is doing really well. She's eating well, sleeping well, and learning something new every day. She has a favorite word these days:

BOOBIES!

It's Potty Time!

Congratulations to Ava. She's a big girl now.

Three, count 'em, THREE mornings in a row she has awakened with a dry diaper! She has consistently been doing both of her, ahem, jobs on the big girl potty. She has a little toilet seat that fits right on the commode. When she's "All done!" she knows to flush the toilet.

CAN YOU BELIEVE IT???

Granted, she has to be reminded. Often. It's funny to watch, because Laura is very dramatic and enthusiastic when she asks Ava to use the bathroom.

Ava, do you want to use the big girl potty?! You do??
Let's go! Oh,my goodness! You are such a big girl! Oh, my goodness, I am so proud! Yeah, Ava! *clap*clap*clap*

Heck, I wanted to sit on the big girl pot myself!

Being a grandma, I had to run right out and buy some big girl undies. Dora the Explorer, size 2T. Cutest things I ever saw. I presented them to her in a pretty gift bag with pink tissue paper. She, of course, tossed the paper to the floor, ignored the panties, and assumed the bag was her new purse--which she promptly hoisted onto her shoulder just like the big girls. All this while sporting wet hair because she had just dipped her head into the toilet. Thankfully, the water was clean!

By the way, all of this has been accomplished by using some tricks supplied by Laura's sister, Liz, who works at a preschool/daycare. One strategy is to only change her diaper while she is standing, so that she gets used to the idea that she can no longer be passive about toileting. Interesting, huh? They also suggest putting their pretty undies right over the top of the diaper. Whatever the method, it seems to be working. I'm so proud of her!

Ugly

I spent Sunday evening at the funeral home. My stepbrother's son died Friday. He was 38 years old--younger than I am. Lung cancer.

My stepbrother and his wife put on brave faces and performed the required meet and greet. They hugged and kissed, shook hands, and asked the appropriate questions. How are the kids? How's your mom doing?

When it was my turn to go through the line my stepbrother hugged me tight and whispered in my ear, "Isn't this ugly?"

Oh, yes, it truly is ugly. It's ugly that a kind, loving young man should be taken away from those who love him. It's ugly that people feel so much despair that they are driven to take their own lives. It's ugly that our children and grandchildren are born with a syndrome that erases so many hopes and dreams. It's ugly that those same children and their parents face discrimination so often, and in so many ways. It's an ugly that can't be viewed head on, but rather by peeking cautiously through the spaces between your fingers.

Life empties us, little by little. Who can stand it?

This has not been a good summer. I have been stuck, stagnant, and apathetic. Basically, I've been mired in a depression so deep that I can't seem to get out. This isn't anything new, it's just taking much longer to resolve itself. I take medicine, I'm pretty self-aware, yet the depression persists. I find myself avoiding social situations, neglecting to return phone calls, and basically hiding in my house every chance I get. Even weekends don't help; I sleep literally all day on Saturday, nap on Sunday, and drag myself back to work on Monday. I will be seeing my doctor September 2, and I am hoping that some good will come of that visit. I don't like to complain in such a public venue, but I just wanted you all to know that I haven't forgotten any of you. I truly want to post on this blog and read all of yours. I just don't have the energy most days.

Let me give you a quick update on Ava. Hold onto your hats!

In the past couple of months Miss Ava accomplished the following amazing feats:

• Graduated from the G-tube and eats like a horse. She weighs 25 lbs.
• Went "Number One" on the the potty--two times!
• Learned a gazillion new words.
• Developed a temper the likes of which has never been seen this side of
  hell
• Learned to swim, kind of, with a dog-paddling stroke so long as
  someone supports her under the tummy.
• Climbed on a jungle gym.
• Learned torture skills that would make a Nazi proud--biting, scratching,
  slapping, screaming, and NO! Said skills are usually performed on people she
  loves, especially her mommy. Go figure.
• Followed by, "Hi, Mama! How you?"

To top it all off, our camera is broken. I am hoping that Laura will share her photos (hint) with me soon so I can post them.

Have a great day!

Independence Day

Oh, yes, I still have faith.

God Bless America!

Uh-oh

Did I ever mention that tube feeding is a pain in the you-know-what?

It was just a matter of time. Ava sorta-kinda accidentally removed her feeding apparatus in the bathtub Sunday night. Because she was never given a MicKey button, a trip to the hospital was necessary. Laura tried to get a catheter into the stoma to keep it open, but it just wouldn't go. You would think that six months post-op it wouldn't close so quickly, but it did.

Mott Children's Hospital is approximately two hours from Ava's house. Laura's mom transported Laura and Ava to the hospital so that Justin could go to work (graveyard shift, yuck!). Long story short, they all spent the night in the ER and Miss Ava was just miserable. She did get a MicKey button, but it's too big and protrudes several inches from her tummy.

Wanna bet she pulls this one out, too?

Our Pretty Ava

I just spoke with Ava during my morning break. She put the phone to her ear, and sounding exactly like Chuckie Finster of the Rugrats, said....

Hi, Grandma!

She made my day.

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...

Minor Rant

It's been over two years since Ava was diagnosed with Williams Syndrome. I like to think I have made my peace with it and moved on. Still, once in a while I am reminded that our little one has to work ever so hard to master tasks that are so simple for other children.

Ava loves to toddle on the sidewalk, all the way to the end-turn around-and do it all over again. Unfortunately, the poor baby doesn't dare to look down while walking. It makes me sad that she gets stuck on a benign crack in the sidewalk. She gets visibly agitated and cries. It's a simple fix. Pick her up, move her past the crack, and she's good to go. Visuospatial issues, indeed. And what missing gene is responsible for my granddaughter having to walk as carefully as someone who is 80 years old?

Change of Plans

Yesterday I felt an enormous weight on my shoulders. Things have been really hard lately, both at home and at work. I wanted to post something about what's going on, but I was too drained and weepy to write. I'm glad I waited.

Laura called me at lunch time today.

"Guess what your granddaughter did today!" ( I knew right then Ava was in trouble)

It seems Miss Ava had a lovely bath today. Unfortunately, she was so relaxed that-you guessed it-she, um, pooped in the tub. Now really, that isn't so bad. Except that she stuck it in her mouth, smiled, and exclaimed,

I booped!