Ava News

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...

Minor Rant

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

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!

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

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

Happy Easter to all my favorite chicks!

Michaela's on my mind

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?

TGIF

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

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

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

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

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!

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

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

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

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!

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!

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.......