The Odd Life of the Lovebug Family

Lovebug Family August Happenings...

Little Ladybug is doing fabulous with her cochlear implant. The day her implant was activated was not world changing for her, she even declared the device was, "too loud." But as she has become accustomed to the new & different sounds she is more aware of her surroundings. She frequently will cup her ear and say, "What's that noise?" Many sounds are new for her, so we explain what they are.  Or she will tell us she hears something. Just the other night, she ran inside to tell me on her nightly walk with Papa, that she heard an owl hooting for the first time. This makes us so excited as parents to see her new discoveries and learn more about the world around her. Her first mapping session at CASTLE will be next week.

I ADORE

my Sisters!!!

Mrs. Ladybug has been having a great couple of weeks. Since my Campath treatment & last Duke appointment, I have been feeling on the upswing. I have also had lots of quality time with my extended family recently which is some of the best medicine for my soul. I am still in the process of the transplant evaluation. Once I complete it, the doctors will have a better idea of listing time. Right now my goals are to work on strength training and weight. I've lost alot of weight recently and am back to my pre-tx cf malnutrition weight status. My doctors want me to get a feeding tube to help fatten me up. I've had two feeding tubes in my past and although I am really not looking forward to the procedure or sporting around a smelly, uncomfortable, long tube that connects to my innards, I know it's whats best right now.

FosterBug is still with us and is doing well. We are praying that long term plans to be with us will be in FB's future. We don't know how it will all pan out, but we know if it's in God's plan, things will come together. Mr. & Mrs. L saw the movie, The Odd Life of Timothy Green. I really enjoyed the movie and cried throughout it. I could really relate to so much of the story line. I think this is a must see for all parents, but especially for those who have adopted and fostered. This movie reminds me of just how thankful I am for fosterbug and the impact FB has had on our lives. It hasn't always been easy, but so worth the while. The last several lines of the movie resonated with my heart so much. I was basically crying like a baby by the last scene. Please take your family to see this film!

Our friends Jesse & Whitney at the Surfin' Spoon

  I have been beyond encouraged by the out pour of love, generosity, prayers, and thoughts of others. We have had two fundraisers to try and raise Duke's recommended $25,000 goal for transplant expenses and have raised between $6-7,000. : ) Our community is beyond wonderful and I am very thankful for everyone involved. Especially to Milepost 13, South Beach Grille, Surfin' Spoon, & friends and family at Nags Head Church.
 

Mr. Lovebug has been very busy this summer. When he is not working at NHC as a worship leader, he has been working nights taking pictures for his business, Nathan Lawrenson Photography. To help with our family's growing medical expenses. On most of his days off this summer, he has been driving Gwyneth and I to our appointments at Duke & UNC. He is a man I deeply love and cherish. Mr. Lovebug started off his love of photography, not of personal portraits but of the OBX scenery. I've included a recent picture he has taken at one of his favorite locations, the pier.

“Because there's nothing more beautiful than the way the ocean refuses to stop kissing the shoreline, no matter how many times it's sent away.” -Sarah Kay

Definitions for italicized words:
Cochlear Implant: "A cochlear implant consists of an internal and external component. The internal component is surgically inserted under the skin behind the ear, and a narrow wire is threaded into the inner ear. The external component, which looks somewhat like a behind-the-ear hearing aid, is connected to the internal one through the skin via an external magnetic disk.
Incoming sounds are converted to electrical currents and directed to a number of contact points on the internal wire. This operation creates an electrical field which directly stimulates the auditory nerve, thus bypassing the defective inner ear. Unlike hearing aids, cochlear implants convert sound waves to electrical impulses and transmit them to the inner ear, providing people with the ability to hear sounds and potentially better understand speech without reading lips." -hearingloss.org
Mapping: programming a cochlear implant to the specifications and needs of its user.

Cochlear Implants

Ladybug's hearing loss has been a progressive loss. She passed the newborn screening test. It wasn't until a year in a half later, when she was re-tested, that the doctors became concerned. It appeared that Ladybug had a sensorineural hearing loss and it was progressive. This could be a result of many reasons. We know from genetic testing, that her hearing loss is not genetic. We do know, being an extremely small premature infant comes with many risk factors. One of which is vision and hearing loss.



It was right after her second birthday she was fitted with her first pair of phonak hearing aids. She loves her hearing aids. In the morning, if we do not put them in right away, she will ask for her "ears." The hearing aids help amplify the sounds she can hear. But because of her severe to profound hearing loss, there are some sounds she is just not picking up. Most of them are in the high frequency range. Here is a demo of what hearing loss sounds like.

It appeared this fall during a typical audiological and ENT appointment, that Ladybug's hearing was becoming progressively worse. Her doctor at UNC wanted for us to come back in three months. It was at this latest appointment her doctor informed us, he would recommend a cochlear implant for her right ear.

We are in the process of taking this information and doing some research on children who have one cochlear implant along with one hearing aid. If Ladybug had an implant, she would be hearing naturally with amplification in one ear and unnaturally but with the sound field she is missing in the other. We want to make the best decision for her. We understand that making the decision sooner then later, will only benefit her, if we feel that it's the right thing for her at this time.

Any advise from parents of children who have had both a cochlear implant and a hearing aid would be greatly appreciated.

SIGN LANGUAGE CLASS

I am really excited about this class for adults being offered this summer in the Outer Banks. After doing some research and not finding any classes being offered for adults on sign language, I happened to meet Trish who has a background in ASL and teaching. I don't believe in coincidences. Ladybug knows some signs, but we are hoping to teach her more. She is working on using expressive language, but for now, total communication has been our preferred method.

Deaf & Hard of Hearing Community

I have recently come across some great resources for parents of children who are deaf and hard of hearing. I continue to learn so much through other parents who are blogging about their experiences. We have also been learning a lot from Ladybug's educators. I will be excited to share her progress as she is absorbing and progressing so much during this new year.

Here are some of the resources:

*Deaf Village: A great place to access blogs of those in the deaf community.

*Hear the World: A wonderful teaching initiative about hearing loss sponsored by Phonak. Ladybug's hearing aid producers.

*Hands & Voices: Information and networking for those in the deaf/hard of hearing community.

*Raising Deaf Kids: A group at Children's Hospital Of Philadelphia started this network. I love the special needs section.

*The Care Project: Our family has already attended two workshops locally and we love this program! It touches on the emotions associated with hearing loss with the goal of acceptance and advocating on our children's behalf to give them the best life possible.

*Beginnings: A NC program to educate and support parents. This is the first group that contacted our family to educate us and has been a great resource.

*Sign Savvy: Video dictionary of ASL, one of my personal favorites.

*Signing Time: A Favorite DVD learning guide that our whole family loves.



"According to the American Academy of Pediatrics, hearing loss is the number one birth defect in the United States – nearly 33 babies are born every day with permanent hearing loss, 1 in 1,000 have a profound hearing loss and another 2 to 3 in 1,000 have partial hearing loss." {Hear the World}

Read about a common misconception regarding hearing aids. Hearing aids will fix the problem, children can hear normally when they wear them. Our daughter has sensorineural loss and this isn't always the case.

And look at why this famous musician of my era, Joey McIntyre from New Kids on the Block is advocating for the deaf and hard of hearing community.

Online Hearing Test.

For those of you, like me, who can hear all the many sounds God created. Be thankful. Don't take any of your senses for granted!

The Care Project: A Beacon of Hope

This weekend, we had the opportunity to attend a workshop with professionals and parents of children who are deaf and hard of hearing.

It was called The Care Project. Quoted from their website, what it is all about.

"Undeniably, life’s journey is full of challenges. Arriving with those hurdles are different emotions, dependent upon circumstances. An individual facing the challenge of hearing loss needs to be able to rely on a strong support system within the family and community. The CARE Project has a number of components designed to bring families and professionals together for sharing and processing emotions, with the ultimate goal being acceptance and advocating for the best life possible."

I really love this idea on so many levels.

I think having workshops for parents about grief and helping them accept and cope with hearing loss is wonderful. I believe Johnnie Sexton, the developer is really onto something. I wish every parent and professional could have a workshop like this geared for their child who is dealing with a disease or disability.

I find from living with cystic fibrosis and now being a parent of a child with some disabilities; support for understanding, accepting, and coping with daily difficulties is essential. Without it, life would be very challenging and depressing.

Parents want emotional support. Parents need emotional support. This is vital for the special needs community. If you have experienced any kind of disability or disease, you remember clearly when you heard the news for the first time. Your daughter has a genetic lung disease called cystic fibrosis. You have cancer. Your son is deaf. Your child has autism. Your husband is paralyzed.

Accepting this information comes with it, grief. This will come in all different forms, and it will come and go with everyone experiencing it. Grief leaves no one behind. How we deal with it, is up to us. We watched video of parents and children, speaking about how they have dealt with their hearing loss. What it means to them. How they have moved on and learned from it. We watched a video of a professional talk about the lesson she has learned in her lifetime. It was all so moving, very touching. It taught me so much about the hard of hearing and deaf community. It gave me an appreciation for those who have been where we have been. What lessons they have learned, and what they can teach us. This is what makes the world go round.

My husband and I were also able to meet a family within our community who have children who are also hard of hearing. This meant the world to me, to be able to connect with other families. I have a wonderful connection with so many people who are like me, with cystic fibrosis. These connections are very meaningful and full of blessing. But the hard of hearing world is new to us. Gwyneth was just diagnosed 1 year ago. Before this meeting, we hadn't met one other deaf or hard of hearing young family within our community. Now we have, and I feel excited to know we are not the only ones out there.

So, thank you to people like Johnnie who have a vision of how to help others and for starting such an innovative idea like The Care Project!

The Care Project