Wednesday, December 26, 2007

Good News

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!

Thursday, December 20, 2007

The Latest News

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!

Tuesday, December 18, 2007

She's Home!

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.......

Sunday, December 16, 2007


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?

Thursday, December 13, 2007

Surgery Update

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!

Saturday, December 08, 2007

Ava's Birthday and Heather's Post

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

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.

Thursday, December 06, 2007

Feeling the Love

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.