Thursday, April 23, 2009

Meet the Bedgood's

Hello there! So. We had this great idea to create a blog to capture our quest to get a Cochlear Implant for our oldest daughter, Arriana. We are also hoping to gain a little support and spread some joys of what should be an unforgettable and amazing experience for our family.

My name is Kristie. I am married to Brent, 9 years this Se
ptember. We are very fortunate to have three lovely (most of the time - smile) children; Arriana (15.3), Poetrie (6.8) and Parker Styles (1.9). Each of them hold a very special place in our hearts and our lives. And we, like most parents, would do anything to ensure their health, safety and well-being.

Arriana, Parker and Poetrie

Arriana is my step-daughter, but my daughter, none the less. At the tender age of 12, Arriana and her younger brother, Darius, witnessed the untimely death of their mother, Dinika. Dinika passed from severe asthma attack in their Atlanta, Georgia home., August 2006

My husband and I got
the call in the middle of the night in August of 2006. I will never forget that phone call or that drive to Georgia to move Ari into our Ohio home.

The below photo was taken upon our arrival in Georgia. Brent looks a bit tired because we hadn't yet rested and had been driving through the night. This was our firs
t time meeting Dinika's son... we nicknamed him "Diggy" because he reminded us of Run's son. LOL. Here's a kid that we had only heard about from Arriana – we instantly connected with this little cutie.

Brent, Darius, Arriana

Ari is hearing impaired. Her impairment was discovered
around 18m of age although the exact cause has never been identified. American Sign Language is her first language. English, her second. Needless to say, we had some learning to do. We took up ASL classes at St. Rita's School for the Deaf. Arriana also attended St. Rita's for her 7th grade year, where the staff and the school were simply amazing to us during this difficult time.

We were surprised to learn that insurance "does not consider hearing a necessity" so when it was time to upgrade her hearing aids, these costs were not covered. Ouch.

After an amazing year with St. Rita, Ari was doing exceedingly well. She expressed interest in and opted to audition for the School for Creative & Performing Arts. This would also allow her to become "mainstreamed". Brent and I both felt she would benefit from experiencing something outside of the "silent environment" offered at St. Rita's.
Ari auditioned for SCPA and was accepted into 4 of the 6 artistic areas on her very first attempt! Her 8th grade year she studied Instrumental Music (percussion) and her 9th grade year she is majoring in Dance (ballet). Although hip-hop dance is where her true passion is. This year, Nick Lachey is producing a reality series at the school, "Taking The Stage". There is quite a buzz around the school about it and Ari is tickled to find herself surrounded by these kids / friends who are also taking a spotlight in the MTV Reality Show. She is busy making some pretty exciting memories... she was also inducted from the National Junior Honor Society into the National Honor Society this year! Man! This girl is one strong chica... considering the history behind her and the challenges she is now facing.

Unfortunately, over the past year we have noticed some speech deterioration and a bit of a struggle with classroom work. And. A whole lot of "huhs?" It was difficult to pin-point the cause, as we are speaking about a teenager!

After some routine evaluations it was confirmed that Arriana had experienced more hearing loss. In a nutshell, Ari has lost almost ALL of her hearing in her left ear (is near deaf and her external devices are no longer benefiting her). She is also continuing to lose her hearing in her right ear. This is detectable in her speech and in also in her classwork. We have been adjusting her IEP (Individualized Education Plan) to continue to help accommodate her needs so that she does not get left behind.
It has also been determined / indicated that Arriana will ultimately become totally deaf!

This news was simply devastating to us, especially Arriana. We have cried through several painful conversations while discussing her hearing options. Unfortunately, there are not a lot of options. Her hearing loss has proven to be quite rapid recently and it cannot be forecasted as to how much longer she will have hearing.
Arriana underwent an extensive and draining interview to find out her wishes for her personal growth, social interactions and her future. It is important that she is on-board for any major medical decision because some hearing impaired / deaf children do not want to be made "hearing". Some members of the deaf community feel that this procedure makes you a "traitor".

Arriana is adamant that her desire is to be a "hearing" individual / "normal". Breaks my heart.

Her only hope / option is to have a Cochlear Implant surgically implanted.

A single Cochlear Implant costs approximately $35,000 with therapy continued thereafter. The good news is, the doctor's only recommend surgically implanting one implant
at this time. She will eventually need / want to do the second one. But at least with one, she has the potential to hear like you and I (in at least her right ear). It is simply amazing what can be achieved medically... we are amazed by the promise of this procedure.

Insurance has been quite the hurdle (since hearing is not considered a necessity) and we are continuing to research resources and come up with financial solutions. Insurance is currently reviewing with a clinical board to consider covering a portion of the costs.

The bottom line is, we are not going to be able to do this alone. We are going to need a lot of support and we are looking to our friends, family or someone who has a little extra to give and is moved by our cause.

Ari will need to be seen quite often for several months following her procedure. This will be very taxing for our family to attempt this alone – we also have two other children to consider and make sure that they don't feel swept aside either.

We are considering a benefit of some kind and are speaking
to people about door prize / raffle donations. Locations, ideas and financial contributions, no matter what size, makes a difference. You can also make a donation on this blog. Just click the "donate" button (managed by PayPal).

We hope that you find an interest in Arriana and her health and will take an active part in this journey. Please follow our blog and experience this life changing moment with us!

Please help us help Arriana meet her goal... to hear now... and forever.

Collage created by me (Kristie) and given framed to Ari last Christmas, in Memory of her Mother!

1 comment:

  1. This photo is amazing, i say. Everytime i see this photo, I could hear her say...."You are going to hear better! No matter what!