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.

Good bye RSV, Hello Rejection: Steady My Heart

This month and a half has been a bit tough. The after effects of the RSV have included pneumonia, lung infection and concerns of rejection and my PTLD returning. Physically and emotionally, this month has been very hard and exhausting.



My doctors have been most recently concerned with some spots that have managed to pop back up in my lungs. I had xrays, cat scans, pet scans, bronchoscopies and blood work this past month, all of which came back inconclusive as to if the spots were infection or cancerous. My doctors then ordered a second bronchoscopy to biopsy my lung lymph nodes and suspicious spots to get some more clear cut answers. I was very relived to find out, my PTLD was not the culprit, and that I did not need to be concerned about malignancies in my lungs. I was informed, that for the first time in my donated lungs almost 4 year life span, I have grade 2 acute and chronic rejection.



My doctors have been concerned all along with this RSV infection, since it put me at a much higher risk for developing rejection. I am thankful I am at a transplant center that is aggressive with it's care and was able to diagnose it early on.

Because of the rejection and infection. I am being treated with a strong IV antibiotic for the infection and another very powerful IV steroid and added immunosuppressive drugs for the rejection. It's going to be an interesting balance of reversing the rejection and controlling the infection. Added immunosuppressive drugs will increase the risk of cancer, which for me and my history, makes the balancing act a little more complicated. But I know at I am in great hands at Duke. And I can be assured that I am in the palm of my God's hands, which give me the peace I need to get through this obstacle.



These next several days and weeks will be tough on my body physically and emotionally. But I need to remember, despite these hardships, there is a reason, a purpose to it all. I also need to constantly remember about how much support we have received during all of this. My family, friends, and complete strangers have reached out to our family. Praying for us, sending us encouraging notes, making meals, watching our children and just loving on us. For that, I am so grateful for and undeserving of. Thank you.

Even it hurts
Even when it's hard
Even when it all just falls apart
I will run to You
Cause I know that You are
Lover of my soul
Healer of my scars.

Q & A: Christy Hamilton

Before my speech at Duke's CF Education Day this past weekend, I asked some of of my facebook friends who I know have a huge impact on the CF community about their advise, their influences, and their families. I really appreciate for those who responded to my questions. I was able to use question number three as a part of my speech.

Thanks again to all of my friends who participated. I am going to try and include these questions and answers over the next several days.

{The Questions}

1. How did your parents positively influence your life and living with CF? How did they negatively influence your life?
2. What unique memories do you have of your parents and how they took care of you living with CF?
3. What did your family or friends do to help you through your most difficult times with CF?
4. Did your family ever stop you from participating in anything because of your CF? In what ways did they push you to do things to help you?
5. What are the three best pieces of advise you would give to a parent of a child with CF?

{Christy Hamilton}

My friend Christy Hamilton lives in Charlotte, NC and was one of Duke's first lung transplant patients I ever met personally who had a profound impact on me and does to this day. Here is what she had to say.

1. How did your parents positively influence your life and living with CF? How did they negatively influence your life as a CF’er?

My parents were such amazing caregivers. They both poured everything into my CF care, never complained about anything regarding my treatments, 3 hour trips to see the CF pediatrician, or taking extra precautions in keeping me well. They never let me even think that my CF might be a burden on them. Negatively speaking, I think that both my parents and my doctor sheltered me regarding possible complications I might face in the future. I wish they had been a little more open with me and prepared me for the eventuality that I would get sicker and may even have to have a transplant one day. I feel like sugar coated everything, and I think that might be one reason I didn't take the best care of myself when I was in college.

2. What unique memories do you have of your parents and how they took care of you living with CF?

I have several unique memories. The most vivid memory is the stories that my mom would tell me during chest pt. They were about a girl named Annie, and over the years, Annie had many adventures. I couldn't wait to have chest pt time, so I could hear another Annie story. I have often encouraged my mom to write children's books about Annie. Another memory is the 3 hour trips we would take to see my CF doctor every 3 months. The entire family would go.. my mom, my dad, my sister, and me. The CF clinic was located in the mountains where "The Waltons" from the tv series supposedly lived, so on that trip, we would get Waltons' stories, and my sister and I would always get to pick out the restaurant we wanted to eat at. I think making it a family thing kept my sister from being left out, and it also made CF visits a special family time.

3. What did your family or friends do to help you through your most difficult times with CF?

As a child, I was never sick and never in the hospital. It wasn't until I was 23 that I was first hospitalized with a lung infection. My family has been there every step of the way with every hospitalization though. Someone has always been with me, and when I needed a double lung transplant, I had 41 friends and family members who stepped up to be tested, since it was determined that I would need a living-lobar transplant. My mom and my uncle were matches, and they each gave me a lobe of their lung. Later on, I needed a kidney transplant, and my mom also donated her kidney to me. No one has ever made me feel guilty for being sick or needing organs. :)

4. Did your family ever stop you from participating in anything because of your CF? In what ways did they push you to do things to help you?

No, my family never stopped me from participating in anything. I was a very active child. I played soccer, did gymnastics, was a baton twirler, a cheerleader, and even an aerobics instructor in high school. I know that all of these things helped to keep me healthy longer. When it was time to go to college, my parents encouraged me to go where I wanted, and never held me back. They pushed me to get out and find my dreams.

5. What are the three best pieces of advise you would give to a parent of a child with CF?

1. Never let your child think their CF is a burden on you. It's ok to cry with them, but don't cry over them... do that in private. Never let them think they are burdening you with their treatments, appointments, hospital stays, etc. If you are having problems with your boss because of missed days or any other problem that is the result of your child's illness, never let your child hear those conversations. Keep those private. 2. Don't shelter your child! If your child wants to play baseball, let them, or any other sport or activity for that matter. If they want to go away to camp, let them go. They need that autonomy. They need to fit in! That is so important for a child who is living with a chronic illness. Let them have the autonomy of taking over their care for a night if they want to go to a slumber party. Even if they do miss one treatment, it won't be the end of the world, and it might just give them the little bit of freedom they need every once in awhile. 3. If your child asks about the progression of CF, tell them! Of course you will also want to tell them about all of the new treatments being found and the research that continues to be done, but don't keep things from them regarding the eventuality of CF. I think being truthful with your child is the very best thing you can do for them.

Giddy Up

My good friend Rebecca, whose blog you can check out here asked me what I would like to do this year for my birthday, something that is adventurous. I mentioned horseback riding on the beach. I have lived on the beach now for about 10 years and have always dreamed of horseback riding on the beach but have never looked into it. This week, my dreams came true!


It was a wonderful experience. The 2 1/2 hour ride went through a wooded path right onto the beach. We experienced some rain during our ride, but it seem to make it complete. Once we got onto the beach we were able to run with the horses. My friend Rebecca fell off her horse while it was running, and thankfully was alright. The last part of our ride was amazing. It is an experience I will always remember. Thanks Equine Avdentures!


Update on Earrings and Reese:

Joy will receive the first pair of earrings, and Virginia the second. Thanks for these purchases and helping a little girl going through so much.

To see more earrings available for Reese. Please check out Rebecca's Blog to view the earrings.

Earrings for Reese

Please visit this site to learn more about this beautiful little girl name Reese and her journey.

Reese and her family are such an inspiration to me. A group of my friends and I created homemade jewelry tonight to sell on her behalf to help with the extraordinary medical expenses they are facing.

Please take time to read about sweet Reese and her family.

And consider buying some of my handmade jewelry to go towards a great cause.

Thanks!

This first earring pair is made with purple, silver, and white jewels. I included two purple shells and a "believe" and "wish" jewel. Since I am hoping, praying, believing and wishing the best for Reese. Perhaps, this could be for someone who is also going through a hard time who you believe in.

This second nautical pair is made with brown and blue hues and includes fish and lifeboat jewels. I really like this pair and hope it can go to someone who loves the beach as much as I do.


The earrings are being sold for $10.00 each plus shipping. The first person to respond to this post with their email information can receive their chosen pair for $10.00 plus shipping. I plan to make more in the future.

MnM's: Monday Night Mamas

Lastly, here are some of the ladies I created the jewelry with tonight. They are some of my favorite friends who I meet with once a week. We call ourselves, the Monday Night Mamas.

Friends (Part 2)

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A Tale of Two Friends (Part 1)

St. Patty's Day

It's a Party

These next two friends are sisters and the hostess of the party.

Friends...

We all left the party with some sort of Irish Tatoo.

What did we do after the party?

Had a nice visit to this heavenly place on earth.