Friday, August 25, 2006

I've Fallen and I Can't Get Up

Is it just me, or is HTML a secret code that the average person cannot hope to crack? I have been trying to format my posts in an attractive, easy-to-read fashion. Ain't happenin'. I am hopping around from browser to browser trying to make things work. AARRRGH! All my pretty italics, bolded items, paragraph breaks...GONE. I have checked out every help page I can find. Still ain't happenin'. Okay, I am obviously no "spring chicken". I wasn't raised on technology. I learned to type on an IBM Selectric typewriter...had to use and eraser with a brush on the end to correct mistakes. My first car had only an AM radio, but I did purchase an FM converter so I could listen to some decent tunes while cruising Main Street on Saturday night. My high school yearbook devoted an entire page to our one and only "computer terminal". Yep, the "terminal" was in its own room in the library with a sign on the door that actually said "COMPUTER TERMINAL". 'Cause no one would have known what it was without a sign. HOWEVER, I usually can manage to get around on this machine without too much trouble. SO WHY CAN'T I MANAGE TO FORMAT THESE POSTS??? If anyone knows where I can look for some advice will you please send me a link?

Thursday, August 24, 2006

Oh, The Places You'll Go! (maybe)

...Wherever you go, you will top all the rest.

Except when you DON'T
Because, sometimes, you WON'T

I'm sorry to say so
but, sadly, it's true
that Bang-ups
and Hang-ups
CAN happen to you.

Dr. Seuss nailed it that time, didn't he??

One of my co-workers became a new grandma 5 days ago. Baby Alexia is beautiful! Pink-cheeked and perfect. I'm so happy for my co-worker. So why am I so sad for me?

Occasionally I give in to the "why me's". As much as I love Ava just the way she is, I can't help but grieve for what she isn't. I have read the literature. I know it's normal to feel this way and to expect it once in awhile. But man, it just seems to blindside me sometimes. I SO wanted my granddaughter to conquer the world! I had this whole scholar/prom-queen/college grad/published author thing all mapped out. Most likely, it's just not going to happen.

I sometimes am just overwhelmed with respect for the other WS families out there who are navigating this crazy maze we call WS. It is no picnic dealing with sick babies and the endless APPOINTMENTS that come with the territory, not to mention that niggling sense that something bad could happen at any time. (Niggling?? Where in the world did that word come from??) Our family is lucky, because Ava had a great-aunt with WS. At least we have some first-hand knowledge to use. Or maybe it is worse this way. We KNOW the bad things that can happen. However you choose to look at it, this is tough stuff!

On a lighter note, Monday Ava has an appointment (yep, another one!)with her ophthalmologist for a followup on her strabismus. For six weeks her eyes have been patched on alternate days--left eye three days, right eye four days. None of us has seen any improvement, so it looks like the next step will be glasses. Can you just see this little tyke with GLASSES??? Too cute!

Wednesday, August 23, 2006

Beach Baby

She wore an itsy-bitsy, teeny-weeny, PINK polka-dot bikini! It appears our Ava is a bit of an exhibitionist...hope she outgrows that!!

Thursday, August 17, 2006

She has to dance!

I visited Ava tonight after work. I love that girl!!!! After work there is nothing better than her contagious smile to erase all the garbage that I have carried around all day. This kid has an electric smile, no kidding. Huge grin, crinkly eyes, and a total-body wiggle that lets you clearly see that she's happy to see you! I think she equates my visits with her chance to dance. OT says that Ava needs to have lots of tummy time, crawling practice, and must sit, not stand. Unfortunately, Ava's favorite activity in the whole world is standing up and rocking from side to side--DANCING! I just cannot make that girl sit when she so obviously has the music in her--She has to dance. WS kids are known to have an affinity for music. Some have actually become very accomplished performers. I think Ava is headed in that direction, for sure. And if I and her other grandparents have our way, she will have every opportunity to enjoy the music that she so obviously feels in her soul.

Tuesday, August 15, 2006

Ava's Garden

Ava's Garden grew when it shouldn't. All the beautiful plants in my little plot are volunteers. They popped out of the ground and flourished, even though nothing was planted or nurtured. They are lush, blooming, and just won't give up! To me this is perfect symbolism for our beautiful daughter, granddaughter, and niece.

Ava Mae was born December 21, 2005, after a difficult pregnancy. Her mommy, Laura, whom I love like my own, miscarried TWICE in her first trimester. Ava's siblings didn't make it, but our precious girl held on with all she had. She was born at 38 weeks--small, initally unresponsive, and with severe feeding issues. I have never felt so overcome with emotion as I did the evening she was born. I stood at the nursery window and just sobbed. It's true what "they" say: Being a grandparent is so much better than being a parent!

I knew something was "odd" the next day when I visited the hospital. Ava's philtrum was exceptionally long. I dismissed it, thinking that it was just a family trait or something. Several weeks later I took Ava to her pediatrician appointment. At that visit the doctor sat down, looked me in the eyes, and said, "I know you have concerns and so do I. " My mind was reeling when he started on this litany of signs and symptoms. He mentioned her long philtrum, low-set ears, feeding issues, prolapsing rectum, abdominal pain, heart murmur, and on and on. His suspicion was that she had a genetic defect, most likely cystic fibrosis. I can't even find the words to express the devastation I was feeling. And the worst part was that I had to go home and tell Laura and her family what the doctor said. And so it began.

Since then Ava has had a positive FISH test for WS, three surgeries to repair her prolapsed rectum, long hospital stays for IV antibiotics, visits with a cardiologist, geneticist, GI surgeon, GI specialist, endocrinologist, and ophthalmologist; and therapy with Early On of Michigan for feeding issues and developmental delays. Whew! Our baby is high-maintenance! But considering the hell she has been through, she is doing remarkably well. She has a smile that lights up her whole face!

I hope to post regularly on this site so that our friends, relatives, and fellow WS families can chat and learn from each other. I also think that journaling is darn good therapy for the writer!