Ava's Garden

Ava's Growing Up

2011-01-19T17:10:00.000-05:00

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.

2009-06-17T09:14:00.002-04:00

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

2009-04-20T12:38:00.009-04:00

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

Overdue Update

2009-04-10T08:45:00.003-04:00

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!

2008-12-23T11:26:00.004-05:00

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

Happy 3rd Birthday, Ava!

2008-12-20T21:29:00.004-05:00

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.

2008-11-05T10:25:00.006-05:00

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

2008-09-23T11:28:00.002-04:00

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!

2008-08-26T08:34:00.013-04:00

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

2008-08-25T08:35:00.007-04:00

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?

2008-08-18T15:53:00.002-04:00

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

2008-07-03T11:45:00.004-04:00

Oh, yes, I still have faith.

God Bless America!

Uh-oh

2008-06-17T13:21:00.005-04:00

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

2008-06-11T17:04:00.001-04:00

2008-06-05T11:03:00.002-04:00

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

2008-05-28T14:22:00.015-04:00

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...

2008-05-28T14:11:00.001-04:00

Minor Rant

2008-04-23T16:52:00.003-04:00

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

2008-04-15T13:15:00.002-04:00

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!

She's on the charts!

2008-04-09T16:19:00.002-04:00

Ava weighed in at 23 lbs., 10 oz. today. She measured 35" tall. That puts her
just under the 5th percentile for weight, and somewhere between the 60th and
65th for height!
Good job, Ava!

The Kid Whisperer

2008-03-24T19:27:00.003-04:00

The best part of Easter:

Watching Laura expertly convince my grouchy granddaughter to eat some applesauce by gently singing a pretty song. It goes something like this:

Oh, do you know the muffin man? *bite*

The muffin man, *bite*

The muffin man? *bite*

Umm, yeah. If I am ever threatening to jump off a bridge, I hope Laura is there to sing me down!

Easter Wishes

2008-03-19T11:34:00.003-04:00

Happy Easter to all my favorite chicks!

Michaela's on my mind

2008-03-12T15:29:00.007-04:00

I need a favor. I would like every person who reads this post to say a quick prayer for Michaela, a sweet young girl with WS who has been dealing with some serious health issues recently. If you don't pray, at least keep her in your thoughts. Michaela's mom has been very supportive of all of us; it's time to return the favor.

Be well, Michaela!

I borrowed Michaela's art from her mom's blog. You can visit her here to leave encouraging messages.

And you thought YOU had it rough?

2008-03-11T10:31:00.000-04:00

TGIF

2008-03-07T16:03:00.004-05:00

Don't forget to spring ahead Saturday night!

Good news: Ava has regained all of the weight she lost when she was
in the hospital, and then some. She weighed in at a whopping 22 lbs 12 oz! She's
been eating like a linebacker all week!.

Sorry about the last post. I was so disgusted with my clients I wanted to run away. I sometimes worry that I will become so cynical that I won't be able to care anymore. Thank goodness it's Friday; I can regroup for a couple of days and get my sunshiny attitude back in place.
Have a great weekend!

I Love My Job, I Love My Job

2008-03-06T16:40:00.004-05:00

Caller: Yeah, I got a bump down there. I wanna get checked out cause
the guy I'm with has been with a LOT of people. So has my husband.
Oh, and I just remembered, my girlfriend has HPV. Can I catch that through my
mouth?

Me: *Silent retching*

THIS is why public health workers have a high rate of job burnout.

I simply have to win the lottery.

Grandma Geri Rocks

2008-03-05T10:50:00.010-05:00

Grandma Geri's coworkers held a "Jeans Day" recently. For a small fee employees were able to enjoy a casual dress day, with proceeds to go to the Williams Syndrome Association.

They raised $400.00!

Kudos and many thanks to the employees at AP Capital. You can visit their website here .

In Like a Lamb

2008-03-02T07:35:00.003-05:00

Laura: Just so you know, your granddaughter is vulgar.

Me: Huh?

Laura: We were almost finished with her bath when Ava's face
turned red. I told her, DON'T YOU DO IT, AVA MAE!

Ava: *smiles & giggles* All Done! (as
doo-doo floats above the bubbles)

Me: Uncontrollable laughter.

I love that girl!

Precious Blake

2008-02-28T16:08:00.005-05:00

In Loving Memory of Blake Hill

Rest in peace, baby boy.

We love you.

Our deepest sympathy to Troy, Whitney, Brandon and all who knew and loved little Blake. May God grant you peace.

The Monahan's

Kim, Justin, Dominick, Laura, and Ava

Ava's Home!

2008-02-23T20:21:00.002-05:00

Ava was released from the hospital today. Basically, the past week was wasted time. Yes, she is feeling better and is now tolerating her feeds. However, we left today with no real plan of care. It's almost impossible to get the doctors to listen. It's completely impossible to get them to act. Consequently, Ava is in the same situation she has always been. Wait and see. Oh, and did I mention she has now picked up a nice respiratory infection? Just another benefit of hospitalization. Oh well, at least she is home.

We were able to visit with Whitney and little Blake. Whitney is such a beautiful girl. Pretty, smart, kind, and totally devoted to making her baby well. I don't know how she finds the strength to keep going. The PICU is not a happy place. It's noisy and just plain scary. Yet Whitney puts a smile on her face and just does what has to be done. I am so proud of her.

A HUGE thank you to Amy! She drove all the way from Indiana to visit Blake and Ava. What an amazingly thoughtful woman. Unfortunately, when she arrived Laura and Justin had gone back to the hotel to rest because Laura was just too ill to sit with Ava. So what did Amy do? Played with Ava for nearly an hour so that the nurse could take a break! See what I mean?

I am an inconsistent blogger. I don't provide as many details as I should, and I certainly could post more often. Still, all of you put up with me. When times are hard the WS grapevine kicks in and everyone rallies around. I don't know many people who have such a wonderful support system. I can't thank all of you enough. Your advice and good wishes keep me, Ava, and our whole family going strong.

Much love to all of you!

PS: Tatum's mommy, Lisa, is crazy. I have witnesses.

Update

2008-02-09T15:43:00.003-05:00

First of all, let me just say that I have had all I can take of Williams Syndrome. Happiness gene, yeah, right.

Second, I have been avoiding all of you because it breaks my heart to hear about illness and surgery and angry outbursts from our kids who are blessed with the aforementioned happiness gene. I am currently unable to make sense of a genetic deletion that can bless a child with a beautiful personality and the gift of empathy and at the same time curse him with life-threatening cardiac issues.

Third, my sweet Ava is in the hospital again. This time it was a nasty virus that took her down. She was an inpatient for a week at Sparrow hospital, went home for a day or two, and now is at U of M. The poor baby just cannot eat or drink. Consequently, she dehydrates really quickly and really severely. Her doctors were concerned that her organs were beginning to shut down, but it seems that that crisis has been averted. It looks as though she will be getting a j-tube, which hopefully will get the food where it needs to be without causing such chronic vomiting. I hope so, because she has been steadily losing weight. She is lethargic and just not "Ava". I'm keeping my fingers crossed that she will turn a corner soon, because she has been too sick for too long.

Last, but certainly not least, please pray for Whitney and her family. Things are as bad as they can get for her. Blake's prognosis is very poor. Laura and I feel very blessed to have met Whitney and Blake yesterday. She's such a sweet person, and little Blake is trying so hard to survive. Unfortunately, they are so far from home that it's very difficult for their family to be here. Thank goodness Troy is here right now, because Whitney should not be alone. I don't even know what else to say. It's just incredibly sad.

"Suffer the little children to come unto me, and forbid them
not: for of such is the kingdom of God." Mark 10:14

Ava's First Haircut

2008-02-01T11:09:00.000-05:00

Great-grandma gave Ava her first haircut last weekend. Isn't it cute?

Good News

2007-12-26T21:03:00.000-05:00

I was beginning to think my Christmas spirit would never kick in this year. I didn't send any cards. I wrapped the gifts haphazardly, basically just covering the important parts and slapping a self-adhesive name tag on the top. No bows this year. I didn't play my Christmas CDs. I didn't even decorate the tree until December 23rd. I finished my shopping on my lunch hour, December 21, at Walgreens, of all places. It felt like I just barely managed to go through the motions this year. Fortunately, everything changed at the eleventh hour.

For the very first time ever, my son, Justin, invited me, my mom, and Dominick to come to his home for Christmas Eve. Ava just wasn't portable this year. And you know what? It was wonderful! We munched on nachos, veggies & dip, potato salad, and drank Jagermeister. What a combo, huh? It worked for us just fine, thank you. Ava was an absolute doll all night, giggling and hamming it up. I bought her a Fisher-Price musical stage, which she adored. It has a mirror on it, which was covered in Ava kisses in no time. We all enjoyed ourselves very much, even though our evening was completely different than our usual celebration. I guess sometimes it is good to shake things up and just let go.

The best news is that Ava has made such good progress that she is now off her 24 hr feedings. She now is able to eat pureed foods and clear liquids by mouth all day, with the tube feedings just at night. She has gained 2 1/2 pounds since December 13. Awww, just like her grandma!

By the way, I am officially "the best mom in the world" according to Dominick. It seems Santa brought Guitar Hero III. Apparently GHIII is the hot game this year, because we sure have had a lot of company since Christmas Eve. I hope the novelty doesn't wear off too soon, because I haven't seen Dominick enjoy himself this much in a long time.

Dominick took the picture attached to this post on Christmas Eve. That's our tree, alright, but it seems to look much prettier in the picture. Good job, Dom!

I wish all of you, and us, a very happy New Year!

The Latest News

2007-12-20T21:32:00.000-05:00

These pics aren't brand new, but they are so Ava, I had to share.

Whew! Things have been just crazy chaotic around here. I have taken to leaving myself voicemails, writing notes, and setting two alarm clocks just to minimally function. My Christmas tree STILL looks like a lonely green stick in the corner of the living room. No time to decorate this year. My Christmas baking consists of a bag of bonbons I purchased at the dollar store. I haven't even had time to return phone calls. *sorry, Linda* Pathetic, isn't it? Best of all, I had to report for jury duty this morning. Thank goodness the defense attorney used one of his peremptory challenges to get rid of me. As stressed out as I am these days, his client, who was charged with domestic assault, would have been killing time in the county jail.

On a lighter note, Ava is doing so much better. The visiting nurse has been, um, visiting every day, which is such a help for Laura. Ava still is refusing most foods by mouth, but her color is great and her spirits are high. It does my heart good to hear her laugh! I'm wondering if all these extra calories are giving her more energy. She even seems to be talking more. Today she said "Bompa", bye-bye, and luv ya. She has started hugging her stuffed toys. Also, instead of just passively enjoying her television shows she seems to really get into them now. She laughed out loud at something that Moe, the Doodlebop, did on today's episode.

I believe that your prayers and good wishes are healing our sweet little Ava. Thank you all so much for your concern and great advice. It means so much to us to have all this kindness and compassion bestowed upon us. Ava has a long way to go, for sure, but she has a great mom and dad and lots of friends and family to help make things bearable.

I love Ava so much. She's all I want for Christmas~

Happy 2nd Birthday, Ava!

She's Home!

2007-12-18T22:50:00.000-05:00

Ava came home today! A little groggy, a lot sore--but she is HOME. Funny how her equipment-tubing, pump, etc.-isn't nearly as intimidating out of the hospital setting. Now she is just my sweet, funny granddaughter again. I missed her.

Now that the immediate crisis has passed, it's time to get down to the details of caring for a child who is tube-fed. I have no experience whatsoever. I have lots of questions and concerns, as do Laura and Justin. Ava is still retching and gagging. She is refusing anything by mouth, except for the ever-present Mam pacifier. We tried to get her to lick a popsicle tonight, and even touching the darn thing with the tip of her tongue just disgusted her. Danielle, our local WS expert, says that this WILL pass. We have no choice but to believe her. Danielle has also invited us to a G-tube group that meets at the mall on Tuesday evenings. After the holidays I am hoping that Laura, Geri (her mom), and I can attend. We need all the help we can get.

I am scared, yet anxious to start learning. It's either that or give up having Ava for the weekend, and that is not an option. Laura said that Ava has to return to U of M in a few weeks to get a "button", which should make it much easier for Ava to return to her normal activities-or maybe a new version of normal. Until then I guess we all just muddle through the best we can.

I need advice about something. Laura is not eating, except when Ava is sleeping. She feels it isn't fair to eat in front of her. Laura is a tiny little thing, probably a hundred pounds soaking wet. How can I convince her that it's OK for her to eat in front of Ava without guilt? I don't want Ava to think the whole world stopped eating because she did!

This grandma is signing off and going to bed. I was 3 hours late for work today because I was too exhausted and stressed out to function. I will update again soon, hopefully with some pictures of Miss Ava.

Good night.......

Ambivalence

2007-12-16T20:50:00.000-05:00

Update: Ava had a stat upper GI today (Monday, December 17, 2007)because the docs can't figure out why she can't stop vomiting. She's even vomiting in her sleep, poor baby. Our feeling is that she is being overfed, but the experts don't agree. They are keeping her yet another night for observation. We are praying that she is better soon. She deserves better than this.

Ava is still in the hospital. The poor little thing keeps falling through the cracks, so to speak. Someone "forgot" to write orders for her pain meds, consequently her morphine was taken away and replaced with simple Tylenol. Every time she moves she does that silent scream that tells us she hurts so bad she can't even speak. She has been retching and vomiting. Her g-tube keeps backing up. Her doctor has the bedside manner of Hannibal Lecter. Michigan is in the midst of a wicked snowstorm that is threatening to paralyze traffic. And Ava's birthday is five days away.

What have we done?

Ava's hospital stay hasn't been all bad. We were blessed last evening with a wonderful nurse, Martha, whom Ava loved immediately. As soon as Martha said hello, Ava started smiling and blowing kisses to her. Also, some angel saw to it that orders were written for Tylenol with codeine, which really seems to help. To top it all off, John, the host, brought Ava a VCR and a collection of Barney videos, which she seems to adore. Boy, does that bring back memories! That purple dinosaur is going to live forever.

Best of all we have been receiving great advice and moral support from Danielle, a WS mom from Michigan who is an amazing source of information. Her little girl has been through this exact procedure, so Danielle has practical advice that is invaluable. Still, we are second guessing the decision to have this surgery. How do you know you did the right thing?

Surgery Update

2007-12-13T23:54:00.000-05:00

It's 12:05 a.m. and we just made it back to the hotel. It's been a long, difficult day but we survived it. More importantly, Ava survived it. When I left the hospital she was resting in Grandma Geri's lap, snoozing the best she could. She was in so much pain tonight. She was given morphine for pain, and Tylenol to help bring down her 101 degree fever. The surgery was a success, thank goodness, but Ava has a long road ahead. All of us are hoping that she can grow and thrive now that the constant vomiting will cease.

We arrived at the hospital at 11:30 a.m. only to discover that pediatric surgeries were running at least two hours behind due to some procedures that took longer than anticipated. Perfectly understandable, but poor Ava, she had to go without food or drink for many hours. True to form, she did it without complaint. Thank goodness for Mam pacifiers! The great part is that instead of having to go from one place to another, the staff comes to the patient. We just hung out in the pre-op waiting room, and nurses, doctors, and support staff seamlessly coordinated their visits with Ava. She was such a happy baby, all hugs and kisses for anyone who would give her a glance. She's such a little trooper. Because they needed to insert her IV prior to sedation we weren't allowed to escort her to surgery. Not a problem, she held her arms out to the doctor and let him carry her off. What a great kid.

Friday will bring g-tube training. I am confident that Laura will be an expert on tube feeding by the end of the day. She has been remarkably calm and focused. I, of course, have been of very little help. I cry when I see Ava in pain. Now, I am supposed to be providing moral support here, but unfortunately I seem to fall apart when I see that baby cry!

Thanks for keeping Ava in your prayers. I'll post a progress report soon. Until then, Happy Friday!

Ava's Birthday and Heather's Post

2007-12-08T16:37:00.000-05:00

Ava Mae will be two-years-old December 21, 2007. From an Apgar of 2, to a beautiful, vibrant, thoroughly loved little girl. My heart is so full of love for this child. She is the sun we orbit, the glue that bonds two families and countless friends. We are so blessed.

If you are so inclined, you can send birthday wishes to her at turner_laura122105@hotmail.com.

Caleb's mom, Heather, posted a story that really choked me up. If you haven't yet, head over to her blog and read A Good Story and remember to bring some tissues. You're going to need them. Her story reminded me of something that happened in our community less than a month after our own tragedy during the summer. It was so upsetting to my family that I couldn't even write about it until now, thanks to Heather. It hurts to read about April but, sometimes we are faced with worst-case scenarios that open our eyes.

My guess is that all of us from time to time worry about what will happen to our special needs kids when we are old, infirm, or otherwise unable to care for them. I know I worry about Ava. The story Heather tells is a heartwarming reminder that sometimes people really do care. And also a reminder that it is never too early to plan for our kids' futures, even when we aren't sure we can get through today.

I am a nervous wreck about next week's surgery. I will post from the hospital, hopefully, and keep you all informed about her progress. Until then, have a blessed week.

Feeling the Love

2007-12-06T21:19:00.000-05:00

I grew up last Saturday.

The Great Lakes region of the Williams Syndrome Association held a holiday gathering in Troy, Michigan. Dominick, Laura, Ava, and I packed up the car and drove a couple of hours south to our very first WS gathering. All the way there Laura kept telling me she was very anxious, sweaty palms and all. I, of course, being wise and mature, assured her there was nothing to be

afraid of, that we were going to have a great time. Besides, the party was being held in a church, and how scary could that possibly be?

When we walked in the door I was humbled, rendered speechless. All these faces, WS faces, and I was momentarily stunned. Ava's peers. This is her future. This is as good as it gets.

The next thing I knew, Ben Monkaba, beautiful Ben, welcomed us personally. A huge grin on his face, he thanked us for coming and directed us to the check-in area. Next, a lovely young woman (also WS) offered to take our cake that we brought to share. Another young lady appeared and took our coats. And all of us felt IT. That church was literally bursting with love. I have never experienced anything like it, ever in my life. Even Ava felt it. She was in her glory, smiling and hugging anyone she could. She even suckered Terry Monkaba into cuddling with her and carrying her around the room.

After we got settled and the introductions were out of the way, music therapy began. Ben Monkaba and Louie, the music therapist, led the group expertly. Everyone joined in, even the kids with hyperacusis. They just sat at the back of the room. We sang Christmas carols, shook our jingle bells, and just had a rousing good time. Ava didn't quite know what to do, but I could tell she was thoroughly enjoying the music. She was swaying to the beat and just taking it all in. Heck, everybody was loving it. We took lots of pictures, but I don't think it is appropriate to post them without consent. I wish I would have thought of that before the party ended!

We met a number of really kind people, exchanged some phone numbers, received great advice, ate lots of yummy food. It's a brotherhood (or sisterhood), this WS thing. By virtue of having a child with WS, you belong. No questions asked.

The evening was capped off with a live band, of which two members have WS. Ben Monkaba kicks butt on the drums! It was so cute. The teenagers were dancing next to the stage, arms waving as though they were at a rock concert. I half expected to see some Bic lighters flashing. Even Ava got up and danced, toddling along with some of the older folks. It was a beautiful, enlightening, and comforting evening.

WS is not the worst thing that can happen.

Update: Ava is spontaneously standing up and walking these days. Not all the time, because crawling is still so much faster. Still, she's progressing now in measurable ways. She has also learned how to open cupboard doors. Ouch.

Her surgery is scheduled for December 13. Please pray for her. She is our world.

Lovin' my family...

2007-12-03T17:35:00.001-05:00

Durn Good Vittles at the Middleton Diner

2007-11-28T16:51:00.000-05:00

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!

Pie and Gratitude

2007-11-19T19:38:00.000-05:00

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!

Melancholia

2007-11-17T18:14:00.000-05:00

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.

The Latest News

2007-11-03T21:27:00.000-04:00

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.

Correction!

2007-10-30T19:47:00.000-04:00

Well, it turns out Ava is NOT having surgery this Friday. She will visit U of M for her preop visit, which is much easier for this grandma to swallow. I can handle not attending the preop visit, although I am sending a list of questions for Laura to ask the surgeon. This surgery is completely freaking me out. And for me, the only way to rid myself of fear is to learn. Somehow, knowing the details demystifies the procedure and makes the fear manageable. Hopefully, this esteemed surgeon/professor/department head will have a personality and be willing to talk to Laura in layman's terms. Sometimes docs with the best credentials are complete duds when it comes to people skills. I'm keeping my fingers crossed.

Ava loves to play peek-a-boo. She covers your eyes with her hands and you have to ask, "Ava! Where are you??" And I do mean you HAVE to ask. Otherwise the hands don't come down and she shouts "A-Buh!" Well, this weekend we were playing yet another game of peek-a-boo, her hands covering my eyes, when all of a sudden my "Ava!" was followed by the cutest little voice exclaiming, "Wha-ah-you!" I couldn't believe my ears! This is a child who has an extremely limited vocabulary, basically mama and amma, with an occasional A-buh when asked her name. And now she wants to know wha-ah-you?

I'm right here, baby, anytime you need me!

I love you, Ava, more than sunshine or ice cream, gentle rain or love notes.

You're the best thing in my world.

*kisses from Grandma*

Diary of a Mad Grandma

2007-10-21T21:46:00.000-04:00

I apologize for staying away so long. I have been so distracted for the last month that blogging just didn't get it's turn at the top of the list. Also, I have been a total grouch.

Here's an update, in a nutshell:

Mom had surgery.
Mom is fine, but feeling very sorry for herself, which of course DRIVES ME CRAZY.
The house is falling apart. The water heater croaked, the kitchen plumbing died, the lawnmower is broken, the car is on empty, and Harold has fleas.
A tree fell on our house last week after a nasty thunderstorm. Of course there wasn't enough damage to warrant the insurance company buying me a new roof. Just a big mess for me to clean up. Darn.
I have plantar fasciitis, which makes me feel, and walk, like a very old woman.

Ava has had quite a month. She had a pH probe a few weeks ago, the results of which were very disappointing. It seems our Ava will be having a Nissen fundoplication on November 2, 2007, at the University of Michigan. I am all for anything that will improve her quality of life, but this particular surgery just scares me, especially the G-tube that comes with it. I am so afraid that all her hard work at feeding therapy will be lost. And I just cannot bear seeing Ava in pain.

To add insult to injury, I can't have time off work for Ava. You see, I will be in an Emergency Preparedness meeting November 2. I won't be available for Ava and her parents, because I must be trained and ready to respond to the needs of the PUBLIC. However, I was told that, "If you truly feel this is an emergency for YOU, then an exception COULD be made. But our HOPE is that you will attend the meeting." Yeah, right.

On a lighter note, our little girl walked! Oh, yes she did--all the way across the room! She toddles side to side, looking ever so much like little Clare. Mind you, she can't do it on her own. You have to stand her up and tell her to walk, but she does it. I am so proud of her!

Role Reversal

2007-09-20T17:52:00.000-04:00

My mother had shoulder repair surgery Tuesday. Her doctor, a tiny redhead who looks just old enough to buy lottery tickets, did a bang-up job of making Mom whole again.

There were a few problems post-op, including an O2 level that seemed to hover around 80. Poor girl, she now seems to be developing a respiratory infection, accompanied by a nice fever. She is bruised and bloodied, somewhat loopy from the Vicodin, and really, really sore.

Strangely enough, I am ENERGIZED by all this excitement. THIS I can fix. I can bathe her, dress her, speak with her doctors, pass meds, administer breathing treatments. I can transport her to appointments, curl her hair, smooth lotion on her skin. I can tuck her in and kiss her goodnight. It feels completely natural, and necessary, for Mom and I to switch roles for a while. She has been through so much this summer. It's her turn to be nurtured. Please keep her in your prayers, OK?

Now for some good news. Ava has finally called me by name. Yep, my new moniker is....

Drum roll please....

AMMA

The times, they are a'changin'

2007-09-15T07:18:00.000-04:00

It's official. My baby is not a baby anymore. My 14-year-old son, Dominick, is a high school freshman. It happened in the blink of an eye. Just yesterday I was carefully assembling his backpack and pinning notes to his shirt. I was the snack mom, cubing his favorite colby-jack cheese to share with his classmates. My refrigerator was covered with assorted glitter-covered construction paper love notes professing "My mom is the best mom because...". I JUST removed the black silhouette of his Kindergarten head, made with the help of an overhead projector and an underpaid teacher's aide. I am grieving, folks.

Dominick tells me that EVERY DAY he is invited to "get high". HE IS ONLY 14, FOR GOD'S SAKE! The girls are getting on birth control. They are surreptitiously making appointments at the STD clinic--yes, they are! The boys are shaving in the morning, and boasting about "getting with" said girls between classes. It's a veritable hormone factory at that school, I tell you! The girls are downright cruel to one another, lifelong friendships forgotten as they compete for boys. And the boys? Too busy worrying about the other boys' sexual orientation and who has the biggest biceps. It's like 1982 on steroids.

This is what our kids with Williams Syndrome won't experience. I think Laura, my sweet, optimistic Laura, summed it up best:

When other mom's are bailing their kids out of jail, I will be home, snuggled on the couch with Ava watching Lifetime movies.

Enough said.

It's a Wonderful Life

2007-09-13T16:17:00.001-04:00

After several months of literary constipation, I am back. I have a million things to say, which makes it even harder to write! I am afraid that once I start writing, I won't be able to stop. Or maybe I won't be able to start. Consequently, you are getting small talk. Nothing of great significance here. I'm saving the important stuff for a rainy day.

Justin, Laura, and Ava enjoyed a few days of R & R in Bellaire, Michigan, over the Labor Day holiday. For those of you unfamiliar with Michigan, Bellaire is located on the second joint of the ring finger (think MITTEN). Justin's paternal grandparents, whom I LOVE, arranged for a family reunion of sorts. Everyone had a great time, and it certainly didn't hurt that Justin's cabin was about 50 feet from "The Brewery". Walking distance, if you get my drift. Thank goodness. Why does beer taste better when you are at the lake?

Ava is looking good, isn't she? She is changing every day. She's a long, lean, groovin' machine. I have to get a video of her rocking out to her CDs. It's as if the music just takes over and she loses control! She does everything at full throttle. Even her temper tantrums. I cannot begin to tell you how satisfying it is to watch Justin deal with Ava as she throws herself to the floor and proceeds to do "The Worm" better than a drunken bridegroom. Hee hee.

Last, but certainly not least, Ava stood up all by herself and took one step! Only one, and she hasn't attempted to actually walk since, but you have to start somewhere, right?

Princess

2007-07-26T21:19:00.000-04:00

Doesn't Ava look like a little fairy in this photo?

Dominick, I, and my mom are heading up to visit the Mackinaw Bridge area this weekend. I think hanging out near the Great Lakes will be a great way to relieve some stress. Something about the sight and sound of water that soothes the soul. Hopefully we will have some pretty pictures to post when we get back.

Have a great weekend!

"If you can't say anything nice..."

2007-07-16T20:56:00.000-04:00

..."then don't say anything at all."

I apologize for my absence. I haven't been able to focus on anything but my family since Memorial weekend. My mom is very needy these days, for good reason, and I am her only child. I haven't been able to concentrate on much of anything besides getting all of us through the day with our sanity intact. Yeah, we have a little co-dependency issue going on, but what do you do?

I just finished catching up on Nancy's blog. I feel like I have been punched in the gut. If you haven't already, you should read God's Hands

I love Miss Ava more than life. She is such a beautiful child. But I, too, see WS seeping into her, both physically and intellectually. It hurts so much to see other people size her up, wondering why she isn't like their children. Right now she is so cute, but as she gets older people will pull away. They won't understand that our girl has faced insurmountable obstacles in her short life. How can they know? I certainly don't want to take on the task of educating the world about Williams Syndrome.

I think therapy is in my future.

Healing

2007-06-15T21:18:00.000-04:00

Life goes on. The thank you cards have been sent, dishes returned to their owners, offers of help politely refused. When friends ask, "How are you?", we all reply, "Fine", and sometimes we mean it. But still there is that emptiness, that nagging ache that won't go away. Except when Ava is visiting.

Last weekend Justin, Laura, and Ava spent the weekend with us. It was just what I needed. My girl is so full of love that I simply cannot dwell on the negative. She gets so excited to see me that she just wiggles all over. She is almost 18 months old and I still get breathless at the sight of her. She puts her little hands on either side of my face, plants a sloppy kiss, and then wraps her arms around my neck. Is there anything better? I don't think so. I love her so much.

Update: Ava can drink from a straw! She loves the taste of caesar salad. She can eat almost anything you put in front of her, including cat food. (And Harold the cat is not happy about THAT!) She is crawling very well, and does that climb-your-leg thing if you don't pick her up. It seems that every day she is learning something new. And all of us are loving every minute of it.

I want to thank all of you for your kind words, support, and prayers after Charlie's death. It meant so much to me. I haven't had the emotional strength or energy to comment on your blogs lately, but I am becoming more engaged in the world around me every day. One thing I have to add: If any of you have family members who are depressed, or if you feel that way yourself, please ask for help. Each of us is important to someone, more than we know. For information on suicide or depression, please visit www.suicide.org

Impotence

2007-05-28T01:16:00.000-04:00

Death is not the greatest loss in life. The greatest loss is what dies inside us while we live.

I am numb, profoundly sad, and feeling GUILTY GUILTY GUILTY that I couldn't stop him. I did all the right things. I held him, told him I loved and needed him, hysterically begged him to stay. But it wasn't enough. Today my mom's life partner decided that life wasn't worth living. He calmly walked down the hall to their bedroom, lay back on the bed, put the cold, blue steel of his .22 pistol in his mouth and pulled the trigger. Click, click, bang.

So here I am, at almost 5am, awake and alone and trying to make sense of today. Trying to figure out why this quiet man who has been my family for sixteen years decided that today, today, was the end of the road. Why it didn't matter that we love and need him. Why my pitiful attempt at CPR didn't do anything except make a mess. Why I felt his pulse disappear right under my fingertips. Why, aside from the blood on his face, he looked so totally at peace.

Charlie hasn't felt well in a long time, he told my mother today. He believed that he was seriously, if not terminally, ill. He simply could not take the pain anymore, both physical and psychological. He matter-of-factly told her that he was going to kill himself today. That she should leave and come to my house, because he would prefer that she not witness his suicide. And that it would happen even if she stayed.

Mom came to my house today at 2pm, crying hard and asking for help. She told me, "Charlie's going to kill himself."

"Oh, no, HE'S NOT," I replied. And I ran faster than I ever have. I called 911, drove maniacally to their house, and proceeded to beg Charlie to care about himself as much as we care for him. It didn't work. By 2:10pm the deed was done. Neatly, with as little fuss as possible.

So now we are left to analyze the past days and weeks. What did we miss? What could have stopped this horrific tragedy from unfolding right in front of our eyes? And how do we remember Charlie's life without reliving his death?

I pray that God gives us the strength to heal. Because right now it feels like we all took a bullet today.

In Memory of Charles R. Hindall
"Charlie"
December 9, 1933 - May 27, 2007

Peace, my friend

A Rose is a Rose

2007-05-23T19:21:00.000-04:00

As some of you may know, I work in public health. This affords me the opportunity to make contact with every freak of nature in the tri-county area. Our agency offers family planning services, STD testing and treatment, WIC, and immunizations. Sometimes all on the same patient.

Caller: Hi, I need to be checked for
dirtiness.

Me, unfazed: Ok, can you come in today?

Caller: Yes, and while I am there, do you do surgery? I
think I have a feather in my ear.

Me: One moment please *pressing the mute
button*

Me: Oh. My. God. while spitting coffee on my computer.

Nutritionist, meeting with WIC client: So how is Junior doing with his cereal?

Client: I don't know how people feed that stuff to their kids. Every time I try, it just blows off the spoon.

As interesting as though encounters were, young parents' attempts at creativity in the baby name department just make my job a never-ending hoot! I may never know how young LuckyBoy got his moniker, but it's a sure bet that he is never going to run for political office!

I can tell that all of you chose your children's names with care. Invincible Erik, the Norseman. Beautiful Clare, with her quiet dignity. Abigale, with her blond braids and kind nature. Feisty Emerson. Sexy Tatum. Exotic Gianna. Sweet, nonthreatening Ava, who loves unconditionally.

And then we have JaFreeda. DaChristian (as opposed to DaSinner?) Mikayla/Makayla/Mequella. Tank (who weighed in at a whopping 5# 15oz) RV (named after the place he was conceived?) JerMichael (not MY Michael) ANYTHING with an apostrophe. It never ends. Have these people never heard of saints and angels? When all else fails, pick an apostle and run with it! Little Tyrongela will be eternally grateful.

PS: The picture of RockStar Ava was too cute not to share. ~K

She Can Do WHAT????

2007-05-14T21:29:00.000-04:00

Never underestimate the power of Ava. In the past couple of weeks she has made remarkable progress! My girl has been EATING. Real food. Sloppy joes, cookies, deli meat, green beans. All followed by a satisfied "Mmmmm". Only families dealing with WS can really understand our (my) complete JOY at this turn of events. Woo-hoo! Yeah, the bites are tiny and she can't handle a lot of food, but she is EATING. Wow. Watching her enjoy tastes and textures is like winning the lottery. Today she gave me a kiss after I had a drink of Diet Pepsi and Laura and I had to laugh when she exclaimed, "Mmmmm." It must have tasted good!

I mentioned earlier that Ava has begun to crawl. Every day she is improving. She can crawl, pivot around into a sitting position, pull herself up on furniture, and yesterday she began to cruise from object to object. Laura tells me Ava is "into everything" but I don't believe my perfect granddaughter could possibly be naughty.

In other news, we had a couple of birthdays last week. Justin turned 21 on May 11, and I turned 43 on May 10. My age doesn't really bother me until I think about the fact that my baby is 21! It seems just yesterday he was starting kindergarten, all dressed up in his polo shirt and khaki pants, soccer-themed backpack in tow. Yes, I dressed him like a little nerd. Imagine my horror when all the other boys were wearing athletic shoes and Teenage Mutant Ninja Turtles short sets. Poor Justin. No wonder he rebelled as a teenager.

Mothers Day was fantastic. I, my mom, and Dominick hit the breakfast buffet. Let's just say they didn't make a profit off our table! After breakfast we did a little shopping, giggled a lot, and then visited the kids. Ava was in great form. My mom just loves that baby. It's funny, because my mother cannot seem to speak English to Ava. Usually she starts out with, "Hello precious girl! Come see da gommies!" Ava kind of tolerates it, but she gets this confused look on her face that seems to say "And they think I have problems??"

Side note: Be careful, because this could happen to you. Dominick and I were in the grocery store Sunday and I decided to check out the premade margaritas. As I was perusing the various liquors Dominick opened his BIG MOUTH and said, "Mom, you should probably get the great big bottle. At least then we won't have to come back here EVERY WEEKEND." I just know the man standing next to me thought I needed rehab. Darn kids!

Happy Mothers Day!

Cheese!

2007-05-01T21:31:00.000-04:00

It seems my girl has fallen head over heels in love--with the camera. She knows just what to do. OK, I admit to a little bias, but is she not the cutest little tyke when she crinkles up her face in a great big smile? She positively glows! Wouldn't it be nice if we all could hold on to that innocence and lack of affectation?

Ava's language skills are improving. She has progressed from "Bah!" to a chorus of gong-gong-gong la-la-la oon-dah. Oon-dah, obviously, means Grandma. We have learned, undeniably, that Ava does NOT have hyperacusis. She is so loud! Her voice is loud and, shall we say, her other bodily sounds are just as powerful. And she expects applause for all of it! She loves those positive affirmations. Hey, Nancy--what was it Jack Handey said? I'm good enough, I'm smart enough, and darn it, people like me! Or something to that effect.

Speaking of Nancy: She told me a while back to be patient, that Ava would "wake up" soon. Amen to that. Ava is wide awake and ready to rumble. Since I began writing this post last week Ava has begun CRAWLING(!) and also pulled herself to a standing position while holding onto a chair. Can you believe it? Thirteen months of therapy and then one day she just decides that it's time to make a move. Wow.

I included the picture of Ava's feet for two reasons. First, I wanted to show off her new shoes. She absolutely hates them. They make her cry just looking at them, probably because she is not willing to sacrifice comfort for beauty. *smart girl* Second, check out those toes. I hope that they don't cause problems when she starts walking. Through the list serve I have learned that this problem is quite common and that whether or not it causes problems is unique to each individual. So I guess we just wait and see.

The group picture is Laura's family, the Turner's. Clockwise from the top left they are Great-grandpa Paul Turner, Grandma Geri Turner (holding Ava), Grandpa Bruce Turner, Great-grandma Arline Turner, Aunt Lizzy Turner, and of course, Laura. Isn't Ava lucky to have so many people who love her?

The smiling girls are Laura and her best friend in the whole world, Tiffany. Tiffany and her husband and baby are living in Ft. Campbell, Kentucky because her husband is in the Army. It's been very hard for these girls to be separated. Tiffany's husband will be deployed to Afghanistan in September. At that point Tiffany will come home to be with her mom until he comes back to the states. Say a prayer for him, OK?

Frustrated with Blogger, Anyone?

2007-04-26T11:17:00.000-04:00

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!

Venting

2007-04-17T20:59:00.000-04:00

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!"

Love you, Baby

2007-04-16T23:09:00.000-04:00

I love Ava, I love Ava

Yes, I do! Yes, I do!

Gamma loves her baby,

Ava Mae

Ava Mae.....

Doesn't everyone make up silly lovesongs?

The Avanator

2007-04-13T13:07:00.000-04:00

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.

Whew....We Made It

2007-04-06T22:42:00.000-04:00

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!

The Big Day

2007-04-05T11:24:00.000-04:00

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!

Update

2007-03-17T12:56:00.000-04:00

It's Friday, after 4pm, and I don't feel like working anymore. What a perfect opportunity to update you all on Miss Ava.

March 14 was a great day. I was lucky enough to take my girl to the geneticist. She sees Dr. Netzloff at Michigan State University's Endocrinology/Genetics Center. Our visit was great! Ava was in a happy mood, she looked adorable, and the weather was warm. Dr. Netzloff is a very dapper, white-bearded gentleman. Ava, of course, thought he was the cat's meow and chatted him up like he was her best friend EVER. He described her as having "a loquacious personality if I have ever seen one!" And he would be right. The kid never stops babbling! We discussed some of Ava's sensory issues, especially scratching, which she does every time air hits her bare skin. We talked about esotropia, clinodactyly, pectus excavatum, hallux valgus, "cocktail party personalities", and various other peculiarities she shares with many people with WS. It felt so great to speak with someone who actually "gets" it. And the best part is....DRs MORRIS AND MERVIS HAVE INVITED AVA TO JOIN THEIR STUDY!!!
We didn't have to seek them out; they came to us! Apparently MSU's genetics department have shared some details about Ava's family history and it piqued the good doctors' interest. They are working on proving that families whose genetic blueprint includes an inversion on the tail end of chromosome blah, blah, blah have a greater chance of producing a child with WS. Ava was chosen specifically because of her paternal aunt who had WS. Strangely enough, other family members have certain idiosyncrasies that correlate with WS symptoms. Laura's dad has pectus excavatum; Laura could only learn math by singing the problems; Laura and her dad are quite musical-you should here the beautiful voice on that girl! *proud mother-in-law grin* So, I am excited and pleased that my precious Ava can maybe help others in some way.

Laura is trying to provide opportunities for Ava to gain some social skills. Every Monday they pack up their Williams Syndrome Association backpack and head to the local library for the "Shake Your Tail Feathers Lap Sit Story Hour". They listen to stories, do crafts, sing songs, dance, and generally have a rip-roaring good time. Except Ava hates the kids. But she LOVES the mommies. After all, the world DOES revolve around Ava and wouldn't every mommy want to give Ava hugs and kisses? Oy, I see this becoming a problem someday!

We went to the pediatrician this week for her 15 month well-child visit and immunizations. Miss Ava weighs a whopping 17 lbs 11 oz, and is 29 inches long. She has low muscle tone in her arms, but her torso and legs are rock-hard. Believe me, she didn't get that from my side of the family!
The pediatrician, Dr. Jonathan Gold, feels that developmentally Ava is somewhere between six and nine months old. I agree, for the most part. However, she is learning something new every day. Who knows? Maybe soon she will start to surprise us all.

The pictures I posted are a couple of months old, but they are so Ava! The one with the pursed lips is her "Am I scaring you?" look. Check out the earrings...Laura won't allow piercings, but she grudgingly gives in to clip-ons! I am going to have to scout out old ladies' garage sales to find some bling for the baby!

Last but not least: Ava's favorite game is "SCARY MONSTER". It goes like this:

Ava: AAAAARRRRRRGGGGGGGHHHH!

Laura: Oooooh, scawy monster!

Ava: *Grin*

PS: I don't have the energy to reflect on WS anniversaries or the listserv. But the posts from those of you who have are so beautiful and heartfelt. I love you guys. Every day you make me laugh, cry, and think. Thank you:)

PPS: Ava's eye surgery is scheduled for April 6, Good Friday. The plan is to straighten just her left eye with the expectation that her right eye will straighten on its own. Wish us luck!

Granny Has Writer's Block

2007-03-12T21:43:00.000-04:00

I haven't posted lately because I DON'T KNOW WHAT TO SAY. Every time I sit at the computer my mind goes blank. Tonight I decided the content of the post doesn't matter. It just seemed important to touch base and say "Hi".

Since I posted last I have a new office, a new nephew (actually a first cousin, once removed, but I am still Aunt Kimmy!), an extremely bad lipid profile, and a slightly deformed spine which causes me nasty aches and pains. My son's track team has started practicing, he's entered puberty-GOD HELP ME-and our phone never stops ringing. My mother is ornery, the cat has fleas, and my tires need rotating. It's a good thing they don't tell you in high school what "real life" is all about!

Ava Mae is doing really well. She is still a peanut, weighing in at a hefty 17 lbs. This week I will be taking her to her appointment with the geneticist. I am looking forward to the visit. Hopefully I will be able to quiet my mind long enough to compile a list of questions for him. I am seriously considering breaking into Dominick's Ritalin stash just to see if it will help me focus.

I have SO enjoyed reading everyone's posts. Sometimes it's the only "Me" time I get. If I get inspired sometime soon I will try to churn out a post with some substance. Wish me luck:-)

Hey

2007-02-19T16:19:00.000-05:00

When my babies were born I loved them with everything I had. I lotioned and powdered, did the photo sittings, attended preschool graduations...You all know the drill. I love both of them just as much today. But I have to tell you, ladies, there is NOTHING that can compare to being a grandma. If it is at all possible I love Miss Ava Mae more than life itself. That child has taken hold of me. She is ALWAYS with me whether I am at work, driving down the road, whatever. She is there. Doesn't matter that she is not "normal". That little girl's hugs and kisses and smiles help me remember that life is precious. Lucky me, I don't have to worry about therapies and IEPs and the myriad of details that come with the WS territory. I just get to love her!

By the way, Uncle Dom turned 14 on February 15th. Of course we had to go out for dinner. Miss Ava came along and was a social butterfly. She did her best to respond to our repeated efforts to get her to say "Ma-ma". Yep, she replies with a loud and proud, "Bah!" She also sprouted about eight arms and managed to throw her toys, tip over my coffee, and choke herself on a spoon. Business as usual!

Love to all,

Kim

PS: Thought I would let you know before you saw it on the news: I am the father of Anna Nicole's baby.

It's All Good

2007-02-06T21:12:00.000-05:00

I read too much. Every day I check in (and on) my cyber friends to see how everyone is dealing with the dreaded Williams Syndrome. It seems that many of us feel that if our children can get this therapy, that supplement, that surgery, all will be well. I applaud everyone's hard work and diligence. But I am also realistic. (I am also perimenopausal, so take everything I say with a grain of salt - or estrogen, if you can spare some!)

I love my Ava Mae with everything I have, yet I know that there are some things that just aren't going to happen. Oh, we will see to it that she has every opportunity possible. She will have her surgeries, her specialists, her OT, PT, etc. She will be constantly and unconditionally loved. At the same time, I will not let myself be crushed when it becomes apparent that there are just some things she won't be able to do. Let me tell you why.

As some of you know, Ava had a paternal great aunt who had Williams Syndrome. Paula Jean Turner was born February 26, 1949 - long before Williams Syndrome had been "discovered". She was a beautiful little girl, but it became obvious that something just wasn't right. Her WS diagnosis didn't come for many years. She suffered the usual feeding issues, kidney problems, hypercalcemia, abdominal pain, anxiety, and so on. Early intervention was somewhat primitive in those days. Paula attended elementary school and later participated in "educational workshops". She lived at home with her parents until her death in May 2006 at age 57.

Never mind the negatives. Paula was so sweet and kind. She was truly a ray of sunshine. She loved being with people, and displayed so much enthusiasm for every good thing that came her way. She loved church, reading, family, music, and Ava! She could play piano, speak some Spanish, and seemed to enjoy life very much. Laura tells me that Paula never lost her ability experience pure joy. Oh, Mylanta! she would exclaim. Paula also had a long-term boyfriend, Bernie, who loved her forever. At her funeral, the minister told us that "Paula never met a stranger." What more could any of us ask of our children than to be universally loved?

It's so easy to get dragged down by all the negative aspects of this damned syndrome. I think all of us secretly hope that our children or grandchildren are higher-functioning, that they have a lesser degree of WS. I cry about it myself, especially when other people seem to notice that Ava is different. But at least for today, I am going to be grateful for Ava-just the way she is.

Love, Kim

PS: Yesterday Ava smiled at me and waved bye bye! My heart is singing!

It's All About Ava!

2007-01-26T19:16:00.000-05:00

Here are some new pics for you to enjoy. Isn't she just precious? And her momma is so pretty.

It seems like Ava is changing so much these days. She is eating stage2 foods very well, not needing as much formula, and sleeps at night with just a quick wakeup for a drink. Not bad, considering. The poor baby is trying so hard to learn to crawl, but she just can't get it yet. Still not much to report on her language skills. Again, she is working on it. Her personality, however, is in full bloom! She is so funny. She certainly loves her people, especially her mommy. But let's face it...what's not to love?

I have had a such an aversion to writing lately. I think part of it is reading all those list-serv messages depresses me so much that I don't even want to THINK about Williams Syndrome. I prefer to live in my own delusional world where Ava is perfect. When I think about all the things that are "wrong" this pervasive sadness takes over and then I have a hard time shaking it off. And I am only a grandma; I can't imagine what it would be like if I were the parent and had to take on such overwhelming responsibility. I applaud all of you! Anyway, I love all of you so don't give up on me yet!

Birthday Girl

2006-12-31T22:40:00.000-05:00

Happy Birthday, baby!

We love you!!

Thank you, Ava

2006-12-31T22:20:00.000-05:00

Oh I believe there are angels among us

Sent down to us from somewhere up above

They come to you and me in our darkest hours

To show us how to live, to teach us how to give

To guide us with the light of love

-Alabama

Ava Mae Monahan came to us December 21, 2005, after a pregnancy about which everyone had an opinion. Dusky and unresponsive, small and imperfect, but a precious miracle that took hold of us that morning and hasn't let go.

Ava has tightened family ties, and created new ones. Deep-rooted connections that never would have existed but for her. Bruce, Geri, Paul & Arline, Matt & Lizzy, Becky--I am honored to know you and share in the love we have for our niece and granddaughter. She is a blessed gift.

I Made a Mistake!!

2006-12-18T13:30:00.000-05:00

I made a mistake while adding links to Ava's site. I accidentally omitted a crucial "s" in Brady's link. So, if any of you were directed to the lesbian/bisexual site, I APOLOGIZE!!

She's a Big Girl Now

2006-12-16T17:36:00.001-05:00

Our baby girl is growing up. She will be one year old December 21. It's been quite a ride!

Ava can clap her hands, sit up, sleep (almost) all night, and light up your world with her pretty smile. It seems she is in a growth spurt now, and is filling out her 12-months clothing pretty well. She is so funny...one minute she's wrapping her little arms around you and planting a slobbery kiss. The next she looks you in the eyes and says, "Arrrgh!", hoping for your pseudo-terrified reaction. Grandma Geri taught her that trick!

Ava is learning about speech. One night I offered her a choice between her bottle and her pacifier. Lo! and behold...she reached out for her bottle and said, "Ba-ba". I KNOW she knew what she was saying. Also, I heard her trying to say "Papa". She stretched her bottom lip up over her top lip and blew air to make the "p" sound. Needless to say, Papa is gonna love that one!

I have been working out of town for the last couple of months, so I can't stop in to visit Ava everyday. Sometimes I miss her so much it hurts. She never fails to brighten my mood. After Christmas I will not be traveling anymore, thank God! Life just isn't fun without my daily Ava-fix:-(

Here are some recent pictures for you to enjoy. The date stamp on them is incorrect. All were taken recently. I will be posting more goodies soon. Until then, be healthy and happy!

Meet the Parents

2006-11-10T20:39:00.000-05:00

Shame on this grandma for not introducing you to Ava's parents! Actually, I have moved up in the world and am trying out my new scanner. I am pleased to introduce my family: Justin, my oldest son; his fiancee Laura, the best mommy in the whole world; and of course, beautiful Ava before we had any idea that something was seriously wrong. Aren't they beautiful? I am still learning how to adjust the image quality, so bear with me. Still, I love this picture and I am delighted to share it with you.

I am so proud of the fact that these kids, 18 and 19 at the time, have met their challenges head on. They are good, loving parents. Justin works full-time so that Laura can devote every possible minute to Ava's care. I applaud them both. Thanks to them, I have met my soulmate.

Blogger, Behave!

2006-11-07T19:32:00.000-05:00

Hopefully these pictures will actually post!

Isn't she sweet?

They're Here!

2006-11-07T18:47:00.000-05:00

Ava has two teeth! We thought they would never arrive, but two of the little devils sprouted last week. Laura discovered them by accident when Ava decided to bestow a slobbery kiss on her, and Bam! that hurt! She is going to look just adorable when they grow a little. We think maybe it was my mom's promise of a big steak that finally convinced Ava to get busy. Unfortunately, the poor kid also got a fever, runny nose, and cough to go along with her pearly whites. Nobody rides for free, huh?

We did have a little excitement over the weekend. My ex-husband, Dan, finally decided it was time to meet his granddaughter. Yep, 10 months old and she had yet to be introduced. Funny how folks have different priorities. Anyway, Ava just kind of looked at him as if to say, "I'm sorry..have we met?" My brain says it's a great thing that Ava gets to know her "other" grandpa, but my heart is hard. Where the hell was he when I was calling constantly to update him on her condition when we truly thought she would die???? There was a point when she was in the hospital that I literally thought I would never stop crying. No kidding, it was brought to my attention by a "friend" at work that I should think about Ava on my "home time" and just concentrate on work during my "work time". Yeah, right. The poor baby's colon protruded out of her body looking for all the world like a piece of raw meat.

I need to remember that the people who love and care for Ava are right here where we belong. And we ain't going anywhere!

I really want to post some links to other websites and blogs on here but sadly, I don't know how. Please help me, or I will have to ask my 13 year old son. And he already thinks I am from another planet.

Until next time, be well everyone!

She loves me!

2006-10-31T22:00:00.000-05:00

Good news! Ava spent the weekend with me. I do believe she is crazy about me! As you may have guessed, it's a mutual attraction. She is starting to give hugs--arms around the neck, head on the shoulder hugs! I can't even put into words the effect those hugs have on me, heck, on all of us. It's like a full-body sigh. Aaaaaaahhhhh.

We discovered something else. Ava has developed the ability to experience empathy. Dominick and I pretended to cry, just to see what she would do. Sure enough, her bottom lip stuck out and you could tell she was on the verge of tears. Amazing. To top it all off, I was playing a Carrie Underwood CD and snuggling with her (Ava, not Carrie!), and she started to whimper at "Jesus, Take the Wheel"! Our baby has a sensitive soul. Or else she just doesn't like country music?

It is really becoming apparent that Ava has very little interest in children. Our little neighbor girl, Makiah, came to visit this weekend. She loves babies. Ava wouldn't even look at Makiah, but was nuts about Makiah's mom. It's like children don't even exist for her. Kind of flattering if you are the adult, but what do we do about it when she starts school? I really don't know what to expect. Laura met Madison, who also has WS, recently and Madison's mom said that she had no interest in kids, either. She still doesn't have many friends in her age group. Adults are another story..she loves 'em all. Excessively. I guess we will cross that bridge when we come to it.

I was revisiting my WS literature recently. Ava has so many of the signs and symptoms. Clinodactyly, sunken chest, SVAS et al, hammer toes, strabismus, long philtrum, full lips, turned up nose, starry eyes, digestive and feeding issues, poor gross and fine motor skills. Thank God she doesn't have hyperacusis or hypercalcemia. Some days I can barely wrap my brain around WS. I just can't understand how such a tiny deletion can be responsible for so many physical issues and then bless a child with such a beautiful, loving personality. Maybe I'll never understand. I guess in the end it really doesn't matter. I love Ava so much that NOTHING else matters!

I have some pictures for y'all, but blogger is being really stubborn and, well, you know how it goes.

I'm Baaaaack....

2006-10-23T20:00:00.000-04:00

Gosh, it's been a busy time since my last post. See, I decided to take a second job to help make ends meet. Bad decision. The only thing I accomplished was losing valuable time with my family. So last weekend I QUIT. Best thing I ever did!

Here's an Ava update: She is my perfect angel, and I can't imagine my life without her! But you knew that:-) Anyway, she has seen the neurosurgeon, the cardiologist, the pediatrician, and the eye doc recently and guess what?? No change, no need for any surgeries (except for her eyes), and wonder of wonders!! she is gaining weight. A whopping 14 lbs. 12 oz. and 26" long! She is starting to get the chubbies on her thighs and feet. She is filling out her size 2 diapers quite nicely, and wears size 6 to 9 months clothing. And her smile is just HUGE! She is starting to give hugs and kisses and you can just tell that she is just plain happy. Thank you, God, for bringing her to us!!!!

Even though I haven't been posting, I have been reading everything I can from all of you. And I sense a different tone in your posts. I think most of us are getting to the "acceptance" part of our grieving processes. At least I am. I love Ava so much. I don't think it would be possible for me to love her any more than I do, even if she were "normal". Seriously, I can actually FEEL the goodness that seems to emanate from her. I think only someone whose child or grandchild has WS can really understand what I mean.

On an interesting note, Early On Michigan made arrangements for Laura (Ava's mommy) to meet with another family whose child has WS. The meeting was fantastic! Laura was so excited, and so hopeful, after meeting Madison. Madison is 14 years old and attends regular middle school, although I am sure she has a modified curriculum. She met Laura and Ava at the door with an enthusiastic "Hi, I'm Madison and I have Williams Syndrome! And you are BEAUTIFUL!" Ok, how can you not love a child like that?? Laura says Madison's vocabulary is really impressive, and her personality is very sweet. She told Laura that she thinks Ava would make a good professor someday, like Albert Einstein! Madison's mom has taught her to give people "high-fives" instead of hugs, because often people are uncomfortable with unsolicited affection. I get to meet Miss Madison soon, and I can't wait. And to heck with high-fives...I want a hug!

Thank you for all of your wonderful posts. You have no idea how many times a day I hop on the net just to quickly catch up on your lives. Nancy, you make me laugh daily (or sob uncontrollably). Shawn and Teresa, you make me want to be the best grandparent I can, because you guys wrote the book on family. Lisa, it broke my heart to see pictures of Tatum in the hospital. Too close to home, you know? Kerry, your beautiful Brady. And Avery, and Daven, and Szabi, and now sweet Emerson. What would I do without you guys? You understand, and you make all this stuff bearable.

Be well, all of you.

Angels Among Us

2006-09-25T21:04:00.000-04:00

Danny Schaub was a very good friend of Ava's parents. He was more like family than just a friend. He was kind and gentle and caring. In fact, he was to be Ava's godfather. Tragically, Danny died before Ava was born. He was so young, too young to die.

The other day Laura reported to me that she thought Ava saw an angel! She said it just chilled her, because Ava suddenly looked up, startled, and then let loose a big smile and a sigh. There was NOTHING there to see, but whatever it was, it comforted Ava.

What do you think? Is it possible that our little angel has her very own guardian angel? Is it possible that Uncle Danny really is looking out for her? Is he playing some celestial version of "peekaboo"? I like to think that God does take care of the little children, especially those who suffer.

Angel of God, my Guardian dear, to whom His love commits me here, ever this day be at my side, to light and guard, to rule and guide. Amen.

Thank you, Danny, for keeping watch.

What if?

2006-09-23T02:53:00.000-04:00

Thanks to a little insomnia I have been watching an old Mel Gibson flick, The Man Without a Face. Mel is a disfigured recluse who begins, somewhat unwillingly, a friendship of sorts with a young boy who asks him to provide tutoring so that he can pass his boarding school entrance exam. It turns out old Mel is really a great guy and provides the mentoring this kid really needs. Yada yada. Anyway, my mind started wandering and in popped Ava! Right now Ava is really small for her age, so any delays are somewhat overlooked because she can "pass" for a younger child. I wonder if, as Ava gets older, people will see only her impairments (for lack of a better word at 3:00am) instead of the great kid inside. What if people whisper the "R" word about her? I know in my heart that we love her as much as humanly possible. I know that she will have every available opportunity to learn. And I try to tell myself to take it one day at a time. But still, what if?

Make mine a tonsillectomy with a side of kidney failure, please!

2006-09-20T23:46:00.000-04:00

I am a card-carrying member of the "Sandwich Generation"

My son had a T&A on September 13. What fun! Thank God for Vicodin and the Family Medical Leave Act. If only the Vicodin were for me:) Anyway, the surgery went well and his GIANT tonsils and adenoids are gone forever! Hopefully no more infections, snoring, or sleep apnea. Mr. Dominick is healing nicely. However, I am not used to being home this much with him. It seems we are starting to get on each other's nerves. I think both of us are ready for this to be over. And frankly, I am tired of buying ice cream.

In addition, my mom has developed some issues that are making me a bit nervous. It appears she is in kidney failure, Stage 3-almost Stage 4. Ugh! So far she has had an MRI and will see the nephrologist next week. It's so scary when a parent's health begins to fail. To top it all off, I am an only child, so there is no one to share this experience with. I am not liking it, but really, I am very confident that she will be ok. Or maybe I am in denial.

On September 18 I discovered the indescribable joy of having a colonoscopy. Unfortunately, I flunked it by engaging in a little apnea and subsequent coughing fit. Doctor said the camera was jumping too much to get good pictures. Can you even imagine what that must have looked like?? Oh my God! My ass jiggling all over the table and these people that I sometimes have to see at the grocery store witnessing the whole thing?? I am so humiliated. Anyway, now I have to get fitted for a CPAP machine and also have a barium enema. Does it even get any better than this??

Now, on to Miss Ava! She saw the eye doc recently and it was decided that surgery is the only way to straighten her eyes. No glasses yet. They will continue daily patching and hope that her vision gets stronger. She has a followup visit in October, I think, so maybe they will recommend something else at that visit. The doctor, Linda Angell, is wonderful! She's very kind and soft-spoken and Ava really responded to her. So, here we go again...back to the operating room. Surgery will be scheduled as soon as clearance is received from the cardiologist. Doctor just wants to make sure that Ava can handle the anesthesia.

Ava went to the cardiologist on September 14. I couldn't attend that appointment because of Tonsil Boy, but they tell me everything went very well. She will have a sedated echo next week, which hopefully will give us more good news.

Sometimes when I write about doctors and appointments and tests I feel like I am writing about some other baby. Because our baby is the picture of health and happiness. She is so sweet and loving and gives 1000 percent more than she takes. It is impossible not to love her! She puts up with us very patiently. Even when we try to dress her funny.

Gotta go now. Since I am on the computer I will have to check out all my favorite kids. So look out Brady and Erik and Tatum and Clare and Avery...here I come!!

I've Fallen and I Can't Get Up

2006-08-25T21:00:00.000-04:00

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?

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

2006-08-24T21:48:00.000-04:00

...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!

2006-08-23T19:03:00.000-04:00

Beach Baby

2006-08-23T18:49:00.000-04:00

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!!

She has to dance!

2006-08-17T20:37:00.000-04:00

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.

Ava's Garden

2006-08-15T21:45:00.000-04:00

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!