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.

5 comments:

Abby said...

Thanks so much for updateing on Emma's progress. I am a physical therapy student and am doing a presentation on TAR syndrome later this week so have been searching the internet like crazy for anyone who has a child with TAR syndrome and the treatments they get. Is Emma in therapy? Does Emma go to school for therapy? Does she also go to outside therapy for her wrist? What things are they working on in therapy? If you could send me a quick email that would be wonderful! Thanks!
Abby
Abbywilliams50@gmail.com

Mom2ABJ said...

I just found your blog and I think Emma is amazing!! No doubt thanks to her parents. I really love reading that she can walk and talk. My sweet little girl, Jennah, is also profoundly disabled with spastic quad CP and can't walk or talk. I hope you don't mind me following your blog now as it's so uplifting to see what these special children are capable of! Best wishes ...

JoAnn said...

Mom2ABJ, thanks so much for visiting Emma's blog and commenting! I took a look at your blog about Jennah...what a sweet smile she has! A lovely young lady...

I'm more than happy that you want to follow Emma's blog! I'm afraid I haven't been posting very often lately; I'm quite ill myself and it's difficult, but I will be trying to update everyone on how Emma's doing!

Praying for you and Jennah and her upcoming surgery!

meg said...

Emma is insanely adorable. My son was born with TAR syndrome as well and is also incredibly creative and intelligent. I've never met someone who didn't think he was intellectually years beyond where he should be. We have future world-changers on our hands, amazing people who will do amazing things. Thank you for sharing this.

JoAnn said...

Meg, so sorry to have missed seeing your post until now! You are SO right about these kids! They are amazing! Emma makes profound statements all the time, just yesterday she said, "Just because you don't believe in something doesn't mean it doesn't exist."