Tuesday, August 5, 2008

Exactly one week until CI ACTIVATION!

ONE WEEK until my stepdaughter, Amanda's CI activation and we are BURSTING with anticipation! There have been so many recent activations going on all over causing a tidal wave of excitement!  We can barely contain ourselves.

This photo was taken when Amanda was a student in my preschool class when she was three.  She is the little pink fluff ball in tights in the center of my ten students. They are all 14 now and entering 8th grade.

Gotta go now so we can hurry up and wait for August 12, 2008!


suddensilence said...

What a cute picture! :) I can't even believe Aug. 12 is just one week away. How exciting!

I'm counting the days along with you til activation day!

~ Wendi

Katie-Louise's Cochlear Implant Blog said...

great, it ain't long!

I'm looking forwward to read how your getting on.

Just remenber, not to expect too much when she's switched on. It may sound awful, espcailly with the beeping sounds which gradually goes over time and become better which i'm sure she'll love it eventually)

katie :)

elizabeth said...

I'm so excited for y'all!

Jennifer Bruno Conde said...

Wendi, Thanks! Six days!! YIKES! Yeah, they were a cute bunch! I am still in touch with 7 of them as Amanda still goes to school with them.

Katie, Thanks for checkin' on us! We appreciate the advice. We keep letting Amanda know it probably will be unpleasant at first...but to keep on listening and letting her brain adjust.

Elizabeth, We appreciate your support and interest!

Janet said...

Jennifer, I'll be thinking of Amanda on Aug 12th. Keep busy and try not to burst before then!

Shari/"Whiger" said...

I hope you can make it till activation day without bursting. :) I'm always told not to expect much. All those bursting balloons may have too much helium in them. Some bloggers said they heard high pitched voices like they were "heliumized." I'm looking forward to how it goes for Amanda.

Jennifer Bruno Conde said...

Hi Janet, YOU must be bursting now with your activation only hours away!! Thanks for your continuing support!

Hi Shari, It's really interesting to read how others describe what they hear when their CI is first actifvated. We are following this mantra for Amanda: "Keep your hope high and your expections reasonable."

By the way, another blogger had this posted on his website about a boy who "sees" by echolocation! There are a series of 5 video clips from Extraordinary People-The boy who sees without eyes. http://www.youtube.com/watch?v=qLziFMF4DHA&feature=related


Amy said...

hi, thanks for giving me the link to your blog, i loved all the video!
if you dont mind me asking i notice one of your comments said she had few back surgery and that she said her brother have muscle dystrophy, may I ask what does she have and did her biological mother have MD too?


Amy said...

Weird, I posted a comment but I don't see it appearing on here, so I'm going to post another one to test to see if its working or not

Amy said...

Ok guess other post didn't work only my testing one appeared, so I'm going to ask again.
I notice that one of your comment said that she had back surgery few time before and she said she had 2 brothers 1 deceased both had MD I'm wondering does the biological mother had MD as well because I just thought its unusual and I'm curious does she have condition other than deafness?
By the way all videos rocked loved them all *smiles*

Jennifer Bruno Conde said...

Hi Amy, I'm glad you like my videos. I really think yours are well done too. And like I said on your blog, I admire the way you speak up for your right to make choices for yourself regarding your CI even if it isn't what some other deaf people may have chosen for themselves.

The reason your posts didn't show up right away is for that very reason. I am moderating the posts before they are published, just in case there is anything objectionable as there have been on other blogs and vlogs. So there is a delay until I can read the post and then approve it.

About your question regarding Amanda's background; Amanda's mom, Laura was a carrier of Duchenne Muscular Dystrophy. Two of Laura's brothers had DMD and both died at 14. Her sister was also a carrier and had a son with DMD who died at 25.

We are currently in the process of having Amanda undergo testing to see if she is a carrier as well since her maternal grandmother, mother and aunt all were. DMD is the most severe type of Muscular Dystrophy and only affects boys.

Amanda's brother Chris died two years ago at age 14. Her brother Joseph is 20 and was hospitalized for pneumonia Christmas of 2006, six months after Chris passed away. But fortunately Joseph pulled through and with the excellent care that Gonzálo provides, he has been relatively healthy ever since.

Amanda was born at 1 lb 10 oz and was in the NICU for 4 months. At the same time, in the same hospital, Laura was in a diabetic coma. Both of them were fighting for their lives. Laura died when Amanda was 2 months old, and her dad, Gonzálo was left a widower with two sons, age 6 and 2 with increasing effects of DMD and a seriously ill hospitalized 2 month-old daughter. (I met the family when Amanda was a student in my preschool class at age 3. I recently retired as a teacher of the deaf after 30 years.)

Amanda has Moebius Syndrome which is a defect in or the absence of the sixth and seventh cranial facial nerves. This is what caused her deafness. She can't blink, move her eyes back-and-forth or fully close them, raise her eyebrows, or fully smile; all of which impedes her expressive ASL. As a toddler she had surgery for webbed fingers which are also part of the syndrome as is scoliosis, which is why she had three back surgeries.

She also has some reversed organs and asthma. Other than that she's a perfectly healthy kid!

Amy said...

Ohh wow, thanks for answering my questions, she's fighter, good luck with the testing to see if she's carrier.
Thanks for saying my video was good, its hard, 1 person told me if I want to be part of deaf community again I should wear my hair down to hide my CI and never mention a word about it and they'll accept me but the problem is I'm proud of my CI I rather to be known to have ci than hiding it so I get a lot of negativity from deaf community. its still beyond me how deaf people view ci as bad thing and danger to deaf culture so I was trying to tell people I'm still deaf even with ci and I want people to stop focusing and judge people solely on what kind device they wear or don't wear on their head.