Thursday, November 12, 2009

Bobbi's story

Bobbi’s Build An Ear
By: Jamie Guerrette, Bobbi’s mother

What started as a simple prayer by a 5 year old has resulted in a series of amazing events only God could have known about. “Dear God please make it so Bobbi doesn’t need her hearing aid anymore” her sister prayed one night. We all chuckled as she prayed, we realized how impossible this was or so we thought.
Bobbi Jo, now age 3 was born with bilaterial microtia with atresia, meaning she has no ears and the little ear she does have doesn’t open. At birth we were told that Bobbi would not hear or talk. What a blow of disbelief this was to our family.
How could this be? Bilaterial microtia with atresia is not detected on ultra sounds so were not aware of this condition until she was born. After medical examinations it was determined she was otherwise healthy. Tests were done on her kidneys, as ears and kidneys develop at the same time prenatally. We were discharged with the directions to google it. An appointment was for Boston and we were off.
By 3 months old Bobbi had been fitted with her first hearing aid. A Bone Anchored Hearing Aid (BAHA) on a softband. Since her ears do not open she was not able to be fitted with traditional hearing aids. As our life became inadated with specialists, most of which came to our home we were quickly learning about deaf culture and our optitions. The providers involved with Bobbi were very helpful. They researched and learning along side us. As time progressed Bobbi met all of her developmental milestones. Bobbi has participated in years of speech and audilogical services that have allowed her to speak and sing along with peers. She is very animated and happy. She enjoys singing, dancing and watching cartoons.
Until recently we felt their were no immediate optitions for her. Until the night her older sister prayed for her and door began to open. Thanks to God’s leading we have found doors and opportunities we didn’t even know were there.
After researching optitions on the internet we found a surgeon in California that was the answer to her sister’s prayers. We found the surgeon on line. We then found out he does a yearly microtia/atresia conference. Last year it was in Korea and next year it is in India. I found out I had ten days to make it to this years conference in Texas, I had to go! I had to meet these surgeons and praise God He made it happen.
While in Texas we learned of her optitions. One optition was to do nothing and hope she doesn’t mind using her hair to cover her ears. This would also mean she would need a bone anchored hearing aid surgically implanted in her skull.
Our second optition is a magnetic ear. These ears do not tan and are difficult to match to her natural skin. All I could think of was how tramatic it would be for her to take her winter hat off at school and loose an ear.
Previously we felt our third optition was our only optition. This options consists of a series of surgeries icnluding skin harvesting and skin grafts. It was a series of invasive surgeries taking cartliage from her ribs to form an ear. As told by the surgeons some of the ears they construct “are a’s and some are f’s”. She couldn’t have this done until she was 8-10 years old and it would take years of surgeries out of state.
Our newest options was CAM, a procedure where two surgeons work together to make an ear, ear canal and an ear drum. CT scans have determined that Bobbi’s inner ear is intact. Bobbi could have this procedure done immediately. Our goal for her after learning of this procedure is for her to have ears before she is in school full time. We immediately knew this was what she needed. One surgery per ear, one time under anastecia and she’d have everything she needed. Four months later the other ear can be done. We met kids that had the surgery and their ears were amazing. Upon completion of these surgeries Bobbi would hear about 80%, this would allow her to live life unaided. If a hearing was needed she would be fitted with a traditional hearing aid. This surgery would allow her to wear sunglasses, headphones and even get her ears pierced. All things that are important to a little girl.
Unfortuntely as quickly as we fell in love with this optition we found out the cost at $45,000 per ear plus travel expenses we were devasted. Upon returning to the county we shared this news with our family. Quickly friends, family, coworkers and our community embraced this little girl. God has showed us time and again that He will provide. We believe He did not lead us there to be turned away. God has confirmed these plans day after day. A few of the same ways He has showed us He will provide include our new computer. We needed a computer to contact doctors and other providers. Three days later we received a free computer from a man that heard our story. We’ve met people that have encouraged us and given us ideas we never would have thought of. People state wide have been praying for Bobbi and her medical needs state wide through a local radio station, what a blessing this has been.
Bobbi’s Build An Ear fund is up and running. Donations may be made to Bobbi’s Build An Ear at 77 Tompkins Rd Presque Isle Maine 04769. Fundraisers are underway and include a Family Photo Day at Central Aroostook High School, scheduled for Sunday Dec 6, 2009. Stay tuned for details regarding other upcoming events including a
Zumba-thon scheduled for January, a Children’s Cookie Bake sponsored by Pampered Chef and Motorcyle Rally. All monies raised will be used to cover medical expenses and travel associated with her surgeries which will take place in California.
As we reflect on this journey we realize the faith of her sister has lead to these new endevors. Praise God for the faith of a little child.

1 comment:

  1. I to have a daughter with Left microtia atresia, we live in houlton.. We did find that my daughter is not a candidate for this type of surgery, which is heart breaking but we will manage. I am amazed that your daughter has finally got her ears.. I understand what your daughter and your family is going thru....May god bless you all... Allison and Emma