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.

Friday, February 25, 2011

Overdue updates about my sweet Emma

Emma, Thanksgiving 2010
Sorry for neglecting this blog for SO long.  My only excuse is that, being chronically ill now myself, I just don't have the energy to do all that I used to.  But there are some important updates about Emma that must be posted.

First big thing to let you know about: Emma's post-surgery recovery continues, and she's doing well! This part might be particularly of interest to the parents of TAR Syndrome kids who are thinking about similar arm/wrist surgery for their little ones.

In order to avoid confusion, I should remind everyone at this point that Emma has names for her hands.  The right hand is "Handy" and the left is "Iggy".  She named them herself when she was very little, perhaps two years old....we have NO idea where she got the idea to give her hands names!  She used to actually talk to them just as if they were people, scolding them, questioning them, playing with them.....it was really just too funny!

She doesn't talk to them so much anymore, but still refers to them by their names, so I will too.  The hand she uses most is Iggy, so the doctor decided to operate first on the right side (Handy).



It's been five months now since the surgery, so she no longer wears a cast on her right arm. She has a splint to sleep in, and Kinesio Tape to wear at all times.   
customized splint

Kenesio Tape






Handy before surgery




Before surgery, she could move Handy in nearly any direction, as if double-jointed or something.   Now it seems that Handy is well-supported, not so floppy.  Her right arm is not as straight as I thought it would be, but her wrist is definitely much firmer, more solid.  This will hopefully help her in the future, although she is still not using Handy to pick things up.
Handy after surgery
Second important piece of info about Emma: as you know if you've been following her, Emma learned to walk just a few months ago.  She's four years old, but has a form of cerebral palsy with ataxia due to her very rare congenital cerebellar malformation: rhombencephalosynapsis (RS).  She has been diagnosed with an even rarer syndrome associated with RS, Gomez-Lopez-Hernandez Syndrome (aka cerebello-trigeminal-dermal dysplasia).

Because of her ataxia, Emma tends to fall down quite frequently.  Recently she fell and banged the same spot on her forehead 3 times over a period of just a few days.  She ended up with two black eyes, looking like a little raccoon.  We realized at that point that we had to buy her some sort of protective equipment for her head, and I did an Internet search and found this helpful site: http://www.kidsafetyhats.com/ 

Here's Emma's new ProtectaCap+Plus, and she likes it!  It has not made her sweat, thus far, during winter, and has protected her head during a number of falls.  Her black eyes have finally faded, and she looks like her pretty self again!

 





Emma is doing better every day, and is constantly surprising us with her amazing vocabulary (some of her new words: stupendous and outstanding)!  I hope to make another video soon.

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! :)


video

Another news item: Emma's first hand/arm surgery is scheduled for September 2nd....it 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

She WALKS!!

video


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

"Emma-isms"


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!!

Tuesday, September 8, 2009

Got her!!

Finally managed to catch the wild monkey (aka Emma) in action....getting up on her own with NO HELP AT ALL! I hope you enjoy the video! :)

video