http://www.youtube.com/watch?v=kBzvQEUzvUQ&feature=player_embedded
Check on Bobbi on the evening news!!
Friday, November 27, 2009
Thanksgiving 2009
As Thanksgiving has come and gone we have so much to be thankful for. The photo sessions are filling up and things are coming together nicely. The medical Monday went very well, it aired this week. It has certainly sparked a lot of interest. Bobbi's photo sessions are also advertised on six or seven radio stations!
We are reflecting on "what we are thankful for this Thanksgiving" and wonderful friends and family immediately come to mind. The people that God has led into our lives for all of the right reasons is evident everyday. We are thankful for all of the people that have embrassed this child as we have. We are so thankful for you.
At this time we have raised about 1,000 dollars, pretty impressive considering a month ago this was all just a dream.
Happy Thanksgiving everyone and please know we are blessed to have you along side us on this journey!! God Bless you!!
We are reflecting on "what we are thankful for this Thanksgiving" and wonderful friends and family immediately come to mind. The people that God has led into our lives for all of the right reasons is evident everyday. We are thankful for all of the people that have embrassed this child as we have. We are so thankful for you.
At this time we have raised about 1,000 dollars, pretty impressive considering a month ago this was all just a dream.
Happy Thanksgiving everyone and please know we are blessed to have you along side us on this journey!! God Bless you!!
Friday, November 20, 2009
Why Medpor?
MEDPOR® Ear Reconstruction
First introduced in 1991 by Dr. John Reinisch, MEDPOR ear reconstruction is a surgical technique that uses a synthetic framework and the body's own tissue to create an ear. Dr. Reinisch and Dr. Sheryl Lewin are leaders in this ear reconstruction technique.
Reconstruction with the MEDPOR technique usually can begin around age three. If only one ear is involved, the MEDPOR framework is customized to match the normal ear, but is created slightly larger in younger children so the ear will be adult-sized. The framework is then covered by the patient's own tissue (called a flap) which is brought down as a thin "living membrane" from underneath the scalp. In most cases, a second surgery may be required to refine the reconstructed ear.
Recently, Cedars-Sinai's pediatric reconstructive surgeons, John Reinisch, MD and Sheryl Lewin, MD have further developed the MEDPOR technique to significantly decrease scarring and achieve better results, including less chance of permanent hair loss. This approach enables them to harvest the "living membrane" flap without any incisions on the scalp, hiding the scar behind the new ear. The flap is often covered with better colored skin from the head, which usually leaves no scar.
Recently introduced into their practice is a combined one-stage reconstruction for both microtia and atresia using MEDPOR. This advance offers a child with bilateral microtia/atresia to have completely functional and aesthetic reconstruction of both ears in three outpatient surgeries before the age of four.
Advantages of MEDPOR Ear Reconstruction
MEDPOR ear reconstruction offers distinct advantages over other techniques. These include:
•Reconstruction may start as early as age three with consistent results.
•Patients with hearing loss due to atresia (absence of an ear canal) may undergo canal reconstruction as early as three years of age
•Minimal pain associated with the reconstruction enabling most patients to go home after the procedure
•Reconstruction may be completed in one or two outpatient surgeries
•A low hairline or hemifacial microsomia does not compromise the result of the ear reconstruction
•The reconstructed ear is designed to match the normal ear in size and projection, which eliminates the need to surgically "pin back" the normal ear. At age three, a child's ear is approximately 80 to 85 percent of an adult sized ear so the MEDPOR ear is constructed 15 to 20 percent bigger so they'll match when the child is older
•Recent advances in the technique developed by Drs. Reinisch and Lewin have significantly decreased the amount of scarring from the procedure
•Six to eight weeks after surgery, MEDPOR ears are able to withstand the rigors of most sports. Protective helmets are recommended for contact sports such as wrestling or football.
Disadvantages of MEDPOR Ear Reconstruction
The disadvantages of MEDPOR ear reconstruction technique are:
•The MEDPOR framework is a foreign material. The material is made of porous polyethylene which has been used in many parts of the body for decades
•Few people in the world have been trained in this surgery and an inexperienced microtia surgeon may have poor results
•Since MEDPOR ear reconstruction began in 1991, the outcome of the implant over a lifetime is not known
First introduced in 1991 by Dr. John Reinisch, MEDPOR ear reconstruction is a surgical technique that uses a synthetic framework and the body's own tissue to create an ear. Dr. Reinisch and Dr. Sheryl Lewin are leaders in this ear reconstruction technique.
Reconstruction with the MEDPOR technique usually can begin around age three. If only one ear is involved, the MEDPOR framework is customized to match the normal ear, but is created slightly larger in younger children so the ear will be adult-sized. The framework is then covered by the patient's own tissue (called a flap) which is brought down as a thin "living membrane" from underneath the scalp. In most cases, a second surgery may be required to refine the reconstructed ear.
Recently, Cedars-Sinai's pediatric reconstructive surgeons, John Reinisch, MD and Sheryl Lewin, MD have further developed the MEDPOR technique to significantly decrease scarring and achieve better results, including less chance of permanent hair loss. This approach enables them to harvest the "living membrane" flap without any incisions on the scalp, hiding the scar behind the new ear. The flap is often covered with better colored skin from the head, which usually leaves no scar.
Recently introduced into their practice is a combined one-stage reconstruction for both microtia and atresia using MEDPOR. This advance offers a child with bilateral microtia/atresia to have completely functional and aesthetic reconstruction of both ears in three outpatient surgeries before the age of four.
Advantages of MEDPOR Ear Reconstruction
MEDPOR ear reconstruction offers distinct advantages over other techniques. These include:
•Reconstruction may start as early as age three with consistent results.
•Patients with hearing loss due to atresia (absence of an ear canal) may undergo canal reconstruction as early as three years of age
•Minimal pain associated with the reconstruction enabling most patients to go home after the procedure
•Reconstruction may be completed in one or two outpatient surgeries
•A low hairline or hemifacial microsomia does not compromise the result of the ear reconstruction
•The reconstructed ear is designed to match the normal ear in size and projection, which eliminates the need to surgically "pin back" the normal ear. At age three, a child's ear is approximately 80 to 85 percent of an adult sized ear so the MEDPOR ear is constructed 15 to 20 percent bigger so they'll match when the child is older
•Recent advances in the technique developed by Drs. Reinisch and Lewin have significantly decreased the amount of scarring from the procedure
•Six to eight weeks after surgery, MEDPOR ears are able to withstand the rigors of most sports. Protective helmets are recommended for contact sports such as wrestling or football.
Disadvantages of MEDPOR Ear Reconstruction
The disadvantages of MEDPOR ear reconstruction technique are:
•The MEDPOR framework is a foreign material. The material is made of porous polyethylene which has been used in many parts of the body for decades
•Few people in the world have been trained in this surgery and an inexperienced microtia surgeon may have poor results
•Since MEDPOR ear reconstruction began in 1991, the outcome of the implant over a lifetime is not known
Meet the surgeon we have fallen in love with!!
Joseph Roberson, M.D.
Otology, Neurotology, Skull Base Surgery
CEO & Managing Partner - California Ear Institute
President - Let Them Hear Foundation
Joseph Roberson, M.D. CEO, Managing Partner Joseph Roberson, M.D. serves as CEO and Managing Partner at the California Ear Institute, where he oversees all business, clinical and surgical daily operations at several Northern California locations. Roberson serves as faculty member and is the former Chief of Otology-Neurotology-Skull Base surgery at Stanford University where he worked before launching LTHF. He serves as a consultant for several industry leaders, including Acclarent, Medtronic, Advanced Bionics Corporation and Cochlear Corporation. He maintains an active clinical and surgical practice, and functions as the Fellowship Director of CEI, a program responsible for training surgeons in Otology-Neurotology-Skull Base surgery.
Currently, Roberson also serves as Founder and President for The Let Them Hear Foundation, a medical organization passionate about bringing the gift of hearing to those living in silence in the U.S. and around the world. As LTHF Founder and President, Roberson leads all daily operations and strategic planning efforts for the Foundation. His responsibilities as President include traveling to train surgeons and found cochlear implant programs overseas, program development and administration.
A widely published and featured speaker, Roberson has appeared on multiple national television programs.
Otology, Neurotology, Skull Base Surgery
CEO & Managing Partner - California Ear Institute
President - Let Them Hear Foundation
Joseph Roberson, M.D. CEO, Managing Partner Joseph Roberson, M.D. serves as CEO and Managing Partner at the California Ear Institute, where he oversees all business, clinical and surgical daily operations at several Northern California locations. Roberson serves as faculty member and is the former Chief of Otology-Neurotology-Skull Base surgery at Stanford University where he worked before launching LTHF. He serves as a consultant for several industry leaders, including Acclarent, Medtronic, Advanced Bionics Corporation and Cochlear Corporation. He maintains an active clinical and surgical practice, and functions as the Fellowship Director of CEI, a program responsible for training surgeons in Otology-Neurotology-Skull Base surgery.
Currently, Roberson also serves as Founder and President for The Let Them Hear Foundation, a medical organization passionate about bringing the gift of hearing to those living in silence in the U.S. and around the world. As LTHF Founder and President, Roberson leads all daily operations and strategic planning efforts for the Foundation. His responsibilities as President include traveling to train surgeons and found cochlear implant programs overseas, program development and administration.
A widely published and featured speaker, Roberson has appeared on multiple national television programs.
Day to day!
Seriously if I didn't have this blog, I wouldn't remember what is going on.
First of all the interview went very well. It will air as the medial monday on the news this MONDAY!!
I have recieved a donation towards the BBAE from Columbia Forest Products! 50/50 candy canes (tickets) have gone on sale there look for Auntie aka Shelley Wortman, she is selling them like mad.
We also made contact with 97.7 today, through the PINH. They have done an amazing commerical for Bobbi, it will air starting Monday. It is good stuff. Thank you Pete. It is about her upcoming photo day!!
Photo day is booked- the photographers have extended their hours and they are filling up. Hoping to finish booking people soon! Laura is away this weekend and she is missed!
Finally Pastor Jewell from Caribou, not sure even what church he is from called me. He got Bobbi's info from a friend at TAMC, person unknown. Each month he takes on a fundraiser in the form of a concert. He called to see if January's concert could be for Bobbi- of course!! He takes care of it. He finds the singer, the location and advertises it on am 600 where he does a daily show! God is good, people are coming out of the woodwork to help us!
When asked by WAGM today... do you think you can do it, nope I don't but I know God can!! I believe this will come to pass. Thank you all for your support.
Oh wait, Tshirts went on sale today too. With the help of Cushman's BBAE shirts have hit the market! They are adorable. Thanks to everyone (especially the designers at LBD) that helped put these together!! I am blessed to have such great supports!!
First of all the interview went very well. It will air as the medial monday on the news this MONDAY!!
I have recieved a donation towards the BBAE from Columbia Forest Products! 50/50 candy canes (tickets) have gone on sale there look for Auntie aka Shelley Wortman, she is selling them like mad.
We also made contact with 97.7 today, through the PINH. They have done an amazing commerical for Bobbi, it will air starting Monday. It is good stuff. Thank you Pete. It is about her upcoming photo day!!
Photo day is booked- the photographers have extended their hours and they are filling up. Hoping to finish booking people soon! Laura is away this weekend and she is missed!
Finally Pastor Jewell from Caribou, not sure even what church he is from called me. He got Bobbi's info from a friend at TAMC, person unknown. Each month he takes on a fundraiser in the form of a concert. He called to see if January's concert could be for Bobbi- of course!! He takes care of it. He finds the singer, the location and advertises it on am 600 where he does a daily show! God is good, people are coming out of the woodwork to help us!
When asked by WAGM today... do you think you can do it, nope I don't but I know God can!! I believe this will come to pass. Thank you all for your support.
Oh wait, Tshirts went on sale today too. With the help of Cushman's BBAE shirts have hit the market! They are adorable. Thanks to everyone (especially the designers at LBD) that helped put these together!! I am blessed to have such great supports!!
Thursday, November 19, 2009
Tomorrow!!
We are meeting with WAGM tomorrow! They are doing a medical Monday on Bobbi. How great! We received our first donation yesterday, 500 dollars! Praise the Lord!! Wow! You can't out give God. Our Tshirts will also be ready tomorrow, can't wait to see them. Thanks Cushman's.
So once again God is opening doors we didn't even know where there. We have filled about 50 appointments with only about 12 left! Wow, who would have ever thought!!
So once again God is opening doors we didn't even know where there. We have filled about 50 appointments with only about 12 left! Wow, who would have ever thought!!
Tuesday, November 17, 2009
It hit home today!
Tonight while watching tv (her favorite thing to do) Bobbi turned to me and said "my ears not long, you ears long, why my ears not long?" I was speechless, this was the first time Bobbi had mentioned it. She said "why my ears not long?" What? Where did that come from? Needless to say, I was speechless. She then went back to watching tv, her questions unanswered. Augh!! This road may be longer than I accepted, I may not be ready for this after all.
Latest Happenings!
We offically opened the Bobbi Build An Ear Bank Account today.
Even more exciting we opened it with $12, our first donation. It came
from an elderly lady at our church, she won it in Bingo at the nursing home.
How sweet is that, she was the one to kick it off!! Three cheers for her!
We were pretty excited. My dad is the gate keeper to the account, he is pretty pumped up having a purpose in this whole endevor also. We are thankful that he
will be managing this for us. For those of you who know me you know that this is not a responsiblity I would be great at, so three cheers for Papa!!
Even more exciting we opened it with $12, our first donation. It came
from an elderly lady at our church, she won it in Bingo at the nursing home.
How sweet is that, she was the one to kick it off!! Three cheers for her!
We were pretty excited. My dad is the gate keeper to the account, he is pretty pumped up having a purpose in this whole endevor also. We are thankful that he
will be managing this for us. For those of you who know me you know that this is not a responsiblity I would be great at, so three cheers for Papa!!
Sunday, November 15, 2009
Letter to donors...
Bobbi’s Build An Ear
77 Tompkins Rd
Presque Isle Maine 04769
C/O Robert Jackson
Dear Donor,
I am writing this letter on behalf of my 3 year old daughter Bobbi Jo. Bobbi was born with bilaterial microtia with atresia, in essence she was born without ears. This was a condition we were not aware of until she was born, it is not detected on ultrasounds. As reported to us by the doctors she was the first baby they had seen born with this condition. As we were handed our baby we were told that she would not hear or talk, news that devasted us. She has proven them wrong time and time again.
Bobbi was fitted with a bone anchored hearing aid at 3 months allowing her to hear. With routine speech and audilogical appointments Bobbi has developed without delays! She is happy, energetic and loves to sing and dance. As she gets older her hearing aid is holding her back, there are many activities she can not do with this hearing aid. As she gets older it is also noticed more by her friends. She is unable to do things that other children do, such as wear sunglasses, listen to headphones and get her ears pierced. She can not wear her hearing aid outside or when she is swimming as it is not waterproof. Based on xrays and CT scans we know that Bobbi’s inner ear is intact, meaning we just need to get the sound to the inner ear.
We have recently found a surgeon in California, through the California ear institute that could make Bobbi an ear, ear canal and ear drum in one surgery. This surgery would have to take place twice, because both of her ears are affected. Upon completion of this surgery Bobbi could hear about eighty percent, meaning she could live life unaided. Without this surgery the list of other options are invasive and much more complicated included permantely implanting an hearing aids into her skull. She would continue to have limitations. We have chosen this procedure as the most effective and appropriate surgery for Bobbi.
Unfortunetly this surgery comes with a price tag of $45,000 per ear, plus travel expenses. We have begun fundraising to assist with the cost associated with this surgery. We would need to spend three weeks per ear in California. This would give her ear time to heal, so she could fly home. This surgery can be done immediately, opposed to other surgeries requiring her to be much older. Our goal is for Bobbi to have ears before she is in school full time.
We are seeking your assistance with this endevor. We are asking you to embrace this little girl, which so many in the county have done. They have stepped aside us as we have taken on this challenge. We believe that we have met these surgeons for a reason, our little girl needs ears. If you are willing to assist with these efforts financial, donations may be mailed to the above address. I would love to meet with you and share our desires and plans with your organization. If this is something that your organziation is interested in please email me at bobbisbuildanear@hotmail.com .
Thank you for your support.
Jamie Guerrette
77 Tompkins Rd
Presque Isle Maine 04769
C/O Robert Jackson
Dear Donor,
I am writing this letter on behalf of my 3 year old daughter Bobbi Jo. Bobbi was born with bilaterial microtia with atresia, in essence she was born without ears. This was a condition we were not aware of until she was born, it is not detected on ultrasounds. As reported to us by the doctors she was the first baby they had seen born with this condition. As we were handed our baby we were told that she would not hear or talk, news that devasted us. She has proven them wrong time and time again.
Bobbi was fitted with a bone anchored hearing aid at 3 months allowing her to hear. With routine speech and audilogical appointments Bobbi has developed without delays! She is happy, energetic and loves to sing and dance. As she gets older her hearing aid is holding her back, there are many activities she can not do with this hearing aid. As she gets older it is also noticed more by her friends. She is unable to do things that other children do, such as wear sunglasses, listen to headphones and get her ears pierced. She can not wear her hearing aid outside or when she is swimming as it is not waterproof. Based on xrays and CT scans we know that Bobbi’s inner ear is intact, meaning we just need to get the sound to the inner ear.
We have recently found a surgeon in California, through the California ear institute that could make Bobbi an ear, ear canal and ear drum in one surgery. This surgery would have to take place twice, because both of her ears are affected. Upon completion of this surgery Bobbi could hear about eighty percent, meaning she could live life unaided. Without this surgery the list of other options are invasive and much more complicated included permantely implanting an hearing aids into her skull. She would continue to have limitations. We have chosen this procedure as the most effective and appropriate surgery for Bobbi.
Unfortunetly this surgery comes with a price tag of $45,000 per ear, plus travel expenses. We have begun fundraising to assist with the cost associated with this surgery. We would need to spend three weeks per ear in California. This would give her ear time to heal, so she could fly home. This surgery can be done immediately, opposed to other surgeries requiring her to be much older. Our goal is for Bobbi to have ears before she is in school full time.
We are seeking your assistance with this endevor. We are asking you to embrace this little girl, which so many in the county have done. They have stepped aside us as we have taken on this challenge. We believe that we have met these surgeons for a reason, our little girl needs ears. If you are willing to assist with these efforts financial, donations may be mailed to the above address. I would love to meet with you and share our desires and plans with your organization. If this is something that your organziation is interested in please email me at bobbisbuildanear@hotmail.com .
Thank you for your support.
Jamie Guerrette
Saturday, November 14, 2009
Contact Us!
People have asked how to contact Bobbi's build an ear.
bobbisbuildanear@hotmail.com with questions or to schedule a photo session.
Donations may be sent to
Bobbi's build an ear
77 Tompkins Rd
Presque Isle Me 04769
c/o Robert Jackson
bobbisbuildanear@hotmail.com with questions or to schedule a photo session.
Donations may be sent to
Bobbi's build an ear
77 Tompkins Rd
Presque Isle Me 04769
c/o Robert Jackson
Thursday, November 12, 2009
Microtia Poem, one of my favorites
Microtia Poem
I'm Special:
On my way from Heaven,
God Delayed my trip that day.
He said that I was special,
and then sent me on my way.
But not before He kissed me,
Right upon my ear.
He left his blessed mark
to carry with me here.
He whispered in my ear right then,
that He loved me without a doubt,
and then He closed my ear up tight,
so the whisper won't get out.
He told me both my legs were strong
and would help me stand up tall.
He told me both my arms would work
to catch me if I fall.
My eyes would catch my memories
to store within the pages of my mind,
My heart would fill with all the things I would love,
so many things, i would find.
He told me I could fall asleep
to my Daddy's bedtime tales,
and listen while my mother sings
of seas and boats and sails.
For when I'm feeling sad, he said,
my other ear would hear,
His whispered words of eternal love,
left waiting for me there.
I'm special!!!!
Bobbi has bilaterial microtia, meaning neither of her ears open.
But how sweet is it!
I'm Special:
On my way from Heaven,
God Delayed my trip that day.
He said that I was special,
and then sent me on my way.
But not before He kissed me,
Right upon my ear.
He left his blessed mark
to carry with me here.
He whispered in my ear right then,
that He loved me without a doubt,
and then He closed my ear up tight,
so the whisper won't get out.
He told me both my legs were strong
and would help me stand up tall.
He told me both my arms would work
to catch me if I fall.
My eyes would catch my memories
to store within the pages of my mind,
My heart would fill with all the things I would love,
so many things, i would find.
He told me I could fall asleep
to my Daddy's bedtime tales,
and listen while my mother sings
of seas and boats and sails.
For when I'm feeling sad, he said,
my other ear would hear,
His whispered words of eternal love,
left waiting for me there.
I'm special!!!!
Bobbi has bilaterial microtia, meaning neither of her ears open.
But how sweet is it!
Bobbi's Build An Ear
Things are happening so quickly, we needed a way to keep people updated and wanted to share our journey with family and friends. Our first post is Bobbi's story, how God got us where we are and where we are headed now.
Please join us on the amazing journey. Things happen everyday and it is so hard to keep track of it all. At this time we are working towards our first fundraiser... Dec 6 at Central Aroostook High school, see attached flyer.
Please join us on the amazing journey. Things happen everyday and it is so hard to keep track of it all. At this time we are working towards our first fundraiser... Dec 6 at Central Aroostook High school, see attached flyer.
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.
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.
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