Wednesday, November 28, 2007

Durn Good Vittles at the Middleton Diner

Thanksgiving was fantastic!

I welcomed the morning somewhere around 10 am, drank some coffee, and caught the tail end of the televised parades. Ahhhh. No stress! No waking up at 4 am to stuff a bird. No panic attack because the potatoes are runny. No giant pile of dishes to wash while everyone else watches football. And best of all, I had pumpkin pie for breakfast, with whipped cream on top. Mmmm.

The Middleton Diner is quite a landmark around these parts. Owned and operated by Mennonite folks, the diner looks like a greasy spoon from 1960. Remember that chrome table your grandparents had? It's at the Middleton Diner, along with the vinyl covered chairs that completed the set. Waitresses dressed in homemade cotton dresses with matching aprons scurry around filling coffee cups. I felt like I was 6 years old again, having dinner with my grandparents after church. The food was great, the company even better, and I really couldn't be happier.

Ava is doing so well these days. It's hard to believe that in a week or two she will have surgery. None of us is looking forward to it, dreading it maybe. I just hope she adjusts well to the g-tube, and that there aren't any complications. Please include her in your prayers!

Monday, November 19, 2007

Pie and Gratitude

My favorite holiday will be here in three short days. Every year I take a few private moments to ponder those things for which I am grateful. At first I thought I wouldn't be able to create even a short list, because 2007 has taken some devastating twists and turns. I, and my family, have faced death, disability, financial problems, and loss. Yet, we always seem to muddle through, usually stronger and wiser. The following are a few of my blessings:
  • My neighbor, Gwen. She is kind and thoughtful and always willing to lend an ear. We meet over burning leaf piles, cross paths with our lawn mowers, and share great kid stories. What would I do without her?
  • My mom, Fran. Always each other's right hand gal. We take care of each other in many ways. Whether it's a listening ear or twenty bucks until payday, we are there for each other.
  • My children, Justin and Dominick. They are opinionated, strong people who never cease to amaze me.
  • Laura. My almost-daughter-in-law, mommy to Ava. I love that girl's sweetness and total dedication to my granddaughter. She never gives up. She's realistic about Ava's limitations, but she is determined that Ava will have every opportunity to grow and learn.
  • My friend, Geneva. Faced with infertility, she and her husband adopted FOUR special needs siblings. In addition, she manages a very successful home business, home schools her children, cares for her elderly mother, and is a home improvement guru. She installed her own satellite dish, garage door opener, dishwasher, sink, faucet, tile, and suspended ceilings. She is an expert seamstress, grows a beautiful garden, and preserves those same fruits and vegetables. Once I visited her and found her at the clothesline, skinning a rooster! Oh, yes. He was picking on the hens, so she killed him, skinned him, cleaned him, and cooked him for dinner. Geneva is my hero!
  • My job. I know I complain quite regularly, but I am truly blessed to have steady employment. Michigan is in dire straits these days. Anyone who has a job and health insurance is lucky indeed.
  • Ava, my beautiful Ava! Always in my heart, every minute of every day. She gives love so freely. She can light up a room with her smile. She suffers without complaint and gives so much more than she takes.
  • My blogging friends. Your kind words, knowledge, and valuable advice get me through the tough times like nothing else can.
  • Our American soldiers. No matter what your opinions about the war, these young men and women sacrifice so much for our country. Give them a shout out at LetsSayThanks
  • PUMPKIN PIE. My mom makes the most delicious pumpkin pie. Just the right combination of flaky crust, sweetness, and spice--with a huge dollop of whipped cream. Oh yeah, life is GOOD!
Have a wonderful Thanksgiving!

Saturday, November 17, 2007


Usually when I post about Ava I like to emphasize the good, minimize the bad. Unfortunately, a missed dose of Effexor XR and the ill-will of the estrogen goddess have me in a funk. I don't feel like sugar coating anything today.

Like all kids with Williams Syndrome, Ava has a myriad of health and developmental issues. Here's a tidy little list for you:

  • SVAS, or supravalvular aortic stenosis. Always there, lurking, waiting for an inopportune time to send Ava to surgery. Probably responsible for her cold, somewhat blue extremities.
  • Spina bifida occulta. Sometimes referred to in our family as "Ava's double butt crack". A bony protrusion from her tail bone, with deep dimpling. You can literally grasp it with your fingers. Feces get stuck in the dimple, and the skin over it actually bleeds. The doctors seem to think it won't cause any problems. Yeah, right.
  • Chronic constipation, even with daily laxatives.
  • Severe gastroesophageal reflux with aspiration. Daily vomiting and retching. Inability to eat much more than Gerber puffs, stage 2 baby foods, and Pediasure, all in very small amounts.
  • Anxiety. I can see it worsening, and it scares me.
  • Sensory issues. Ava scratches and digs at any exposed skin. She is a "picker". She loves to jump, shake her head vigorously, and spin things.
  • Visuospatial issues. Ava sits, crawls, stands VERY CAREFULLY. She is unable to stack blocks or put toys in a bucket.
  • Speech delays. She can say mama, amma, wha-ah-yah, and sometimes dada.
  • Gross and fine motor delays. She can toddle a little, but not much. She cannot point or pick up a cheerio with her thumb and index finger. She has adapted though, and can shovel in the Gerber puffs with her other fingers.
Ordinarily I don't dwell on Ava's disabilities, but this week has been so hard. I am so worried about her. She has a cardio appointment next week in preparation for her upcoming Nissen surgery. She had to miss her photography appointment today because she couldn't stop vomiting. And she has started grinding her teeth. Anxiety, I suppose. It just isn't fair, you know? It hasn't helped that at work we have had an influx of very healthy babies born to some moms who really shouldn't even be allowed to parent kittens. I know I should be grateful that Ava's health issues aren't worse. I know it is not my place to judge others. But sometimes it just hurts. And you, dear readers, are the only people who understand.

Saturday, November 03, 2007

The Latest News

Finally we have a date for Ava's fundo surgery. If everything goes as planned, Ava will be at Mott Children's Hospital in Ann Arbor on December 13. Her surgeon, Dr. Hirschl, comes highly recommended and has a list of credentials as long as my arm. I am confident that he is one of the best and will take good care of our girl. I sent along a full page of questions with Ava's mom and dad, and the doctor patiently addressed all of them.

I am so afraid of Ava having general anesthesia. I think it scares me more than the surgery. I know the benefits outweigh the risks, but even the tiniest possibility of losing Ava makes me physically ill. Fortunately, her heart is holding its own. The SVAS is not improving, but it also isn't getting any worse.

I haven't elaborated much on Ava's reflux problems, but she suffers so much. The poor little thing retches and vomits daily, sometimes many times a day. If her tummy is bothering her she can gag just looking at a sippy cup. She's still on a twice daily regimen of Prevacid and Miralax, and three doses per day of Reglan. This has been going on since she was born, with no improvement. So, yeah, she needs the fundo surgery. Who knows? She might even make it past 19 pounds once she stops vomiting.

I have had such a hard time writing anything lately. It feels like work! It's either ADD or just plain laziness. I have so many things I would like to share through this blog, but I can't seem to force myself to get the details from my brain to the keyboard. I apologize and hope to get my groove back one of these days.