Another Quick One

Hi everyone,

Delinquent am I, I know. Carriella will be entering the school system in a little bit more than a month. She's still not talking, although she sure does scream a lot. I have noticed that she has been crying more and more after songs end. She has been doing that on and off since she was little but it has gotten a lot worse. Is this anxiety? I just don't know.

It's getting harder and harder for me to talk about her issues. I know we've been so fortunate with her health, but I'm just not satisfied. It's hard to see my friends with typical little girls her age. I hate to say it. I should just erase it, but I won't because I can not deny these feelings. What did she do to deserve this??? This is why I haven't been blogging. And I will post this. Because it's real. And I think I'm in denial 99% of the time.

This sucks.

Just a Quick Update

Hi everyone. I hope you are all doing well. The last few months have been terribly busy both personally and professionally.

I came out here to update my blog, which I've neglected for nearly three months. When I read what I last wrote, my heart started to break. It's a total coincidence, but I just learned that my dear friend I mentioned in my last post is going through a terribly difficult time. She's 21 weeks along and just found out that her baby has Trisomy18, which has an impossibly high mortality rate. She and her husband are devastated. If you have room for a special prayer, please keep them in mind.

On a much happier note, Carriella is doing very well. Music therapy and a gluten-free, dairy-free diet seem to be working well for her. I will be going on vacation next week (New Hampshire) and will be able to update more in-depth. In the meantime, I thought I'd share with you pictures of what I like to call "High Heel Therapy"...

... "Boot Therapy"



...and "Sneaker Therapy"

Imelda Marcos, watch out!

Take care of yourselves and I will post more next week.

Hope Comes in Small Packages

I know, I know. I've been delinquent. And even now I only have time to write a short entry. I've been avoiding posting because I've been down in the dumps for awhile...

So I'm writing to share the best news I've had in about a month. One of my best--and oldest--friends is pregnant! After lots of heartache--not to mention the endless poking, prodding, drugs, testing, etc.--she got pregnant...the good old-fashioned way! She lost her mom last month very suddenly and unexpectedly, so it's also bittersweet for her. It's kind of corny to think of it as the circle of life, but I can't help it... I know "Mom" (as I called her) is dancing in heaven and will find a way to be there for her daughter, son-in-law and grandchild.

Here's to hope and the beauty of new life...

Heart Healthy

Today Gene and I took Carriella to her first doctor appointment since her diagnosis. She went to see her cardiologist, Dr. Berning. Since she was born with a murmur, 3 VSDs and a pulmonary stenosis, he followed her for the first 8 months of her life. Everything healed and sealed, and without the Williams' dx, we were set free. So, it was nerve-wracking going back after spending the last year and a half thinking she was "healthy." Thankfully, we got good news: her heart appears to be "normal," i.e., healthy. They were unable to read her BP (wiggly worm), but the EKG and ultrasound were normal. Normal. Healthy. Those are GOOD WORDS.

Next on the medical agenda will be a consult with her pediatrician. After that, I would imagine that hearing and vision tests would be important. On the therapy side, we only have 7 months left in Birth to Three, then it's on to the public school system. Her PT was just cut back to 2x/month, since she is now mobile and functioning well indoors and outdoors. I've been told that Birth to Three is about teaching caregivers how to use therapies in everyday routines. "Medical" physical therapy--for joint health or prevention of joint stiffness--is NOT covered by the program. Boy I can't wait to fight THAT battle with my insurance company if the time ever comes. Let me stop there before I go off on a rant... because today was a GOOD DAY!

I worked from home today since I had to take Carriella to the doctor. It was a nice treat to be away from the often hectic office environment. I love my job, but the pace is often overwhelming. It was nice not to have to commute. At home, I was able to focus and just get work done. A GOOD DAY!

I wish GOOD things for all of you.

Please let me in?

I'm so sad I can no longer access Ava Jewel or Avery's blogs, so I'm posting this to let Anna and Amy know that I miss reading your updates. Please, wontcha let me in?

Edna :-)