Thursday, April 26, 2007

Frustrated with Blogger, Anyone?

Four times I have tried to post this week. Four times I got an error message about blogger's network problems and try again later, please. Is anyone else having these problems?

I have new pictures of my girl to share. As soon as the cyber gods call a truce I will post an update.

Have a great day!

Tuesday, April 17, 2007


My mom has a great blurb: Whoever said life was fair hasn't lived it.

Ain't that the truth.

I was so excited to have a granddaughter. I wanted so much for her-college, boyfriends, a career. I felt that we DESERVED a healthy baby. Laura didn't smoke, drink, or eat unhealthy foods. She exercised daily, got lots of rest, and took her vitamins religiously. And even though Ava was unplanned, no family could have loved her or anticipated her birth more than we did. Enter Williams Syndrome.

I work in public health. Day after day after month after year I talk to women who, with their "fiances", are popping out one healthy baby after another. No matter the drug use, welfare dependency, multiple fathers, unemployment, chlamydia, siblings in foster care: they always manage to keep making more healthy babies. And bitching about how hard it is to be burdened with children. At one point I seriously considered taking a leave of absence because I HATED THOSE WOMEN!!!! I actually said to one complainer, "Well, aren't you LUCKY to have such a healthy baby!" It was all I could do to be civil, let alone give a damn about any of them. Sadly, if I let myself think about those days too much the rage comes back just as harshly as ever.

So what changed? I met all of you! Although we are all scattered, I know that a quick post or email will bring the support that I and my family need. I found this network because Teresa, WONDERFUL Teresa, sent me an email through the listserv with a link to her blog. It was the best thing that ever happened to me. Clare Bear's picture popped up and she looked like she could be Ava's sister. And then came Tatum and Erik and Brady and Szabi and Avery and Emerson and Abi and Daven... And suddenly I didn't feel alone or singled out any longer. Every accomplishment your kids' achieve gives me hope for Ava. Your tears and anger validate my feelings. I truly don't know how I could manage without you.

I am so proud of all of you, of us, because navigating these waters has been, and will continue to be, the hardest job any of us will ever have. Yep, even those of us who are just grandparents. It's ok to feel sad and angry. I like to think that we are a real help to each other, even if it is only online. Who else could possibly understand?

So, Nancy, please don't feel alone. Keep sharing your feelings and know that we are all in this together. 'Kay?

PS: This picture was Ava's very first. All I could say (between racking sobs) was, "Oh my gosh, she has Julia Roberts' lips!"

Monday, April 16, 2007

Love you, Baby

I love Ava, I love Ava

Yes, I do! Yes, I do!

Gamma loves her baby,

Gamma loves her baby,

Ava Mae

Ava Mae.....

Doesn't everyone make up silly lovesongs?

Friday, April 13, 2007

The Avanator

Ladies, I need advice to pass on to Ava's mommy. It seems my girl has begun to morph into a manipulative monster, albeit a very cute and funny little monster. It seems she is hitting and biting others, and gagging herself to get attention. It boggles my mind that she could POSSIBLY need MORE attention. Believe me, she gets plenty. So what should Laura do? Ava is too young for timeouts, spanking is not an option, and yet it hurts when the Avanator smacks you in the face! Worst of all is the evil look in her eye as she is smacking you. Once she gets over her irritability she is all love and hugs and smiles again.

All kidding aside, Ava has certainly developed some behavioral issues. The gagging part is no laughing matter. She vomits regularly...every day...because she either stuffs her hand or a toy in her mouth until she gags. She won't settle for anything less than Laura's undivided attention, and gagging and retching is her weapon of choice if mommy doesn't comply. So what do you do? It's getting so problematic that the feeding therapist suggested that maybe Ava needs a psychologist!

Just when you think you have this whole WS thing under control some other issue pops up and the fun starts all over again. I am actually somewhat jealous of some of you, although I am not proud of it. Ava cannot eat anything with texture-nothing but stage 2 baby food. She can't even eat those teething biscuits that dissolve into goo the minute they make contact with saliva. She is working on using a sippy cup but gags most of the time. Often she can vomit just by looking at food. She isn't mobile, although she has begun to roll around. Her sensory issues are getting worse. She is a scratcher and a wheel spinner. (Sheesh...nice labels) I guess we are all just getting impatient. We want to feed her real food. We want her to grow and learn new skills. And none of it is happening fast enough. It would be so nice to know just how disabled she really is and what we could reasonably expect of her.

I am trying really hard to feel grateful for Ava's relatively good health, and I know that we are luckier than so many families. But darn it, is it wrong to want it ALL for your grandbaby? I love her so much!

PS: The pic was taken in July '06. At that point Ava was crazy about standing up and dancing to the ring tone on my phone. So when the photographer needed a way to get her to smile..Voila!. We held hands and danced.

Friday, April 06, 2007

Whew....We Made It

Ava's surgery was a smashing success! She's feeling a little weepy, and a lot sore, but thank goodness it is over! At first it looked as though the doctor over-corrected the strabismus, but we are hoping that it is just a matter of her eye needing to heal. She was in quite a lot of pain post-op so Dr. Angell suggested alternating between Tylenol and Motrin every three hours for a couple of days. She cried...hard and inconsolably....for quite some time in recovery. Laura said that she would calm down for a bit until she heard another baby cry...and then came the sympathy tears. Bloody sympathy tears. Even when she is hurting our little one still feels others' pain.

This afternoon Ava started to perk up a bit. And here is the amazing part: our girl started doing things she has NEVER been able to do before. Laura gave her a little pink puppy Grandma Geri bought her for Easter. It must have been just what she needed, because Ava started hugging the puppy and rocking forward and back with it, as if she were comforting it. She has never been able to master moving her upper body while sitting. Also, she reached over from a sitting position to give Uncle Dom a hug. I don't know if it's just coincidence, but it seems as though her vision has improved drastically since this morning. Can you imagine trying to function in a world that just doesn't look right?

One thing is clear. If love heals, then Ava will be just fine. Today she had me, Grandma Geri, Grandpa Bruce (Papa), Uncle Dom, and Laura to love and cuddle. And she also had all of you sending out love and concern. Thank you all for your kind words. It means so much to all of us.

Love, Kim

PS: Tatum is next in line for eye surgery. It's not too early to start praying for a successful surgery and rapid recovery:) We love you Tatum!

Thursday, April 05, 2007

The Big Day

Tomorrow is Surgery Day. As you can see in the picture, it NEEDS to happen. I am so excited for Ava, but at the same time I am terrified that something will go wrong. Fortunately, her surgery will be performed at EW Sparrow Hospital, which is our regional trauma center. My logical brain tells me that Ava will be fine. So why am I so worried that I will have to learn the answer to 'how will I survive without her???'

Yesterday I took her Easter gifts to her, just in case she isn't feeling well on Easter Sunday. Ladies, I highly recommend purchasing a dump truck for your daughters! Ava LOVED it. She also loved the plush duck puppet that quacks out several tunes, but the truck really got her going. *Nancy, my granddaughter is a wheel spinner!* It didn't help that I flipped the truck over and showed her how to spin to her heart's content. I don't know if it's a good idea to encourage the spinning; I do know that Ava loves it!

I will let you all know how the surgery goes. Happy Easter!