This blog is dedicated to differently-abled children, particularly those diagnosed with a radial ray defect, hematological issues, Failure to Thrive, developmental delays, microcephaly, cerebellar dysgenesis or cerebral palsy.

Saturday, September 4, 2010

Post-surgery report

Emma is home from the hospital, with a hot pink cast and a straight right wrist!

Of course, none of us have slept much lately, because it's difficult for my sweet girl to get comfortable because of the pain in her wrist. Friday night she could only cat-nap for a few minutes at a time, and Daddy and I took turns holding her.

The fingers on her right hand are very swollen and she doesn't want to move them. But her doctor says that's perfectly normal and that we should massage them, gently move them for her, and try to keep her hand elevated above the elbow and above the heart.

I've rigged a sling for her with a cut-up dishcloth, since the sling sent home from the hospital has not been very successful....Emma wiggles out of it very quickly!

Needless to say, I'm so happy that she's home, and that the surgery is over! Now it's time to heal, then it will be time to learn how to use the hand again in it's new position.

More soon....and thanks for the prayers!

Thursday, August 26, 2010

So many things going on!

As you've seen in the previous post, Emma is starting to walk, and every day she walks a bit further. It is very gratifying to know that she is finding her way, developing these normal physical skills.....even with her multiple diagnoses and problems she never, ever gives up!

Below is another video of Emma walking, this one is quite a bit longer than the first, although still a bit shaky, since I was using my iPhone. She loves to look at herself in the mirror, and frequently walks over to stand in front of it, admiring herself. I wanted to capture that and suggested several times that she look at herself in the mirror....of course, since Mommy was suggesting the mirror as a destination, being Emma, she walked everywhere BUT there! :)

Another news item: Emma's first hand/arm surgery is scheduled for September will be on the right hand only, and will be performed by Drs. Lightdale and Stevanovic at CHLA.

I can't help but be nervous about it, although I'm sure that all will go well....positive thoughts and prayers are always welcome!

Monday, August 9, 2010


Even one step is exciting.....and she knows it's an event! Check out the expression on her face!

Tuesday, July 27, 2010

Quick update from a very bad blogger

I must apologize for not posting anything about Emma in such a long time....again, my health has interfered with my sincere intentions to keep this blog going. Also, we have just moved 200 miles from Southern California to it's beautiful Central Coast. We love our new home but I HATE MOVING! We are still unpacking, and it seems as though we will still be unpacking when Emma is 20 years old!

I do have exciting news though: Emma is getting her wheelchair VERY soon! We are so excited, because it will definitely give her more mobility and better access to tables, toys, educational things, not to mention that it's easier to play with other kids if you are (almost) at their eye level instead of crawling on the ground!

When her therapists put her into a trainer chair of a similar size and design to the one they had ordered for her, they tried to get her to show us how she can propel herself a short distance, but being Emma, she acted like she had no idea what they were talking about and had never seen a wheelchair before.

She can be a bit stubborn at times! :)

Emma's actual chair will be pink, of course, since pink is her signature color. We hope that she won't need to use it for long. She has actually taken a few steps on occasion in the past few weeks!!! Wah-hoo!!

Sunday, March 28, 2010


I apologize for my long absence from this blog....I'm still dealing with several health issues of my own, and am in the middle of transitioning from working full-time to working part-time to applying for disability. :(

But I just had to write a quick post to capture a few of the phrases and sayings that Emma has come up with lately. She's just so incredibly funny sometimes!

Recent examples:

"It's not me changing, it's the weather."

"Daddy, you're disgusting!" (after feeling his face when he had neglected to shave)

Overheard while talking to her hands....(the right one is "Handy", and the left is "Iggy"):

"Hi Handy and Iggy! How are you today?"

After doing something she's not supposed to she has been known to scold Iggy, who is usually the one to blame.

In other news, Emma may FINALLY be getting her own wheelchair soon!! More soon! I promise!!