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.

RSV: Respitory syncytial virus

RSV: Respitory Syncytial Virus

If you are wondering, like me about the S, in rSv. Syncytial means: multinucleate mass of cytoplasm that is not seperated into cells.


RSV is a common virus with cold like symptoms. Not usually dangerous for the typical child and adult. Their immune systems usually take care of it in a few weeks. But it can be dangerous for children who are at risk like those born premature, those with lung problems, and the immunocompromised.


Here are some factiods about RSV:

• It's the most common cause of lower respiratory tract infections in children worldwide.
• Virtually all children contract it by the age of three.
• It's the leading cause of pneumonia and bronchiolitis in infants.
• It may play a major role in the pathogenesis of asthma and chronic obstructive pulmonary disease.
• It causes significant morbidity and mortality in immunodeficient patients.
• It spreads easily from person to person through contact with respiratory secretions.

Ladybug was given shots to prevent RSV for her first two years of life. This is a common practice for premature infants, since during the first 24 months of life, RSV can lead quickly to bigger issues. Ladybug girl presented symptoms of a cough and fever a few weeks ago and later on a runny nose. It is her first time with RSV and as a child with chronic lung disease of prematurity, makes me a little nervous as her mama. We have been treating her with tylenol, xoponex and pulmicort, and some cough medicine at night to help her sleep. It has taken her some time, but she seems to be at the end of this yucky virus. She used to loathe her fish face mask, but now as long as we keep her entertained, is great about holding it herself and doing her breathing treatments. We think having PFT tests as an infant, which forced her to cry through a mask, began this fear and traumatized her.


As a lung transplant patient who is immunocompromised, this virus has been the first that has given me a high febrile temperature and has given me trouble with breathing since I was transplanted. Whenever you have high temps or dropping PFT levels, it is a sign of infection and time to call your transplant coordinator. I called mine, and they told me to head over to the local ER for tests. I tested positive for RSV, was given fluids and a prescription for Ribavirin and sent home.

Now this is the part that makes me a little upset. Of all my years of life, never have I been denied a drug by my insurance company, except for a vitamin which I can handle. My insurance denied the oral Ribavirin because, "coverage is provided for use in combination with an alpha interferon for the treatment of chronic hepatitis C. " The drug seems to be mainly used for this purpose, but if you read further, it is also used for respiratory purposes. So, instead of purchasing a simple drug on my behalf I was put inpatient to be treated. Yes, insurance company: deny me a drug so you can instead pay for a 5 day hospital stay, that will save you some money! : )

In the end, it is a good thing the insurance company denied me I suppose, since I do have RSV related pneumonia. Plus, having RSV puts one at risk for BOS, which I definitely want to stay away from! All things happen for a reason, right?

Antibiotics are only effective against bacterial infections and viruses are generally a little trickier which is why they say, "there is no cure for the common cold." My RSV is be treated by inhaling an antiviral teratogenic and mutagenic drug called Ribavirin. I inhale it with this mask which is attached to a small particle aerosol generator and am covered in this lovely plastic tent. Duke, if one of the few hospital centers who performs this aerosol treatment. I get to inhale this breathing treatment at night for 6 hours. I will complete this treatment after 5 days. My nose blocks up with the chalky crystals every 45 minutes. As soon as the six hours is up, I take off my mask and fall into a deep, restful sleep.

I miss my family very much during this 5 day hospital stay.

I am using skpe for the first time and have enjoyed skyping with Mr. L, my family, and especially our children. The super bowl was last night, but skyping with my daughter was the highlight of my evening! I miss my Ladybug kisses very much. I miss our Fosterbug's hugs. And I miss Mr. Lovebug who has been amazing through this all and can't wait to get home to the Lovebugs 3.


The nurses, doctors, and staff at Duke continue to make me thankful for the blessings of incredible care at this top notch facility. As hard as it is to be away from my family, the nurses here are like family and make my stay feel like, home away from home.

I also have received letters at Duke from family, friends and strangers letting me know they are praying and thinking of me and sending love and encouragement my way. These kind words touched my heart and soul. If you sent one of those letters, I can't tell you how much that impacted me. Thank you.

A big game is coming up this Wednesday here in Durham, NC. UNC vs. DUKE. I will depart the hospital that day with this cheer:

GO.........

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.

7 Years of Happily Ever After

Cheers to seven years!

June 27, 2004 -- our day of holy matrimony.

June 27, 2011--we spent the day traveling in the car 8 hours to Duke and back. I am still madly in love with my husband of 7 years.

Cousins

Happy Birthday to Miss Sarah! Ladybug's cousin Sarah turned one this week. Sarah is a special niece, since I was able to be present last year for her birth. She is the only niece/nephew out of 11 that I was able to be present for almost her entire birth process. She was also named after me which makes her extra special. Plus, she is super cute!

Here is one of Ladybug's Aunties, Rachel and cousin number 12 due and arrived this week. Photo was taken by Terry Kyle Photography.

Ladybug with Cuzbug for the 1st time. He arrived May 22nd at 10:10 p.m. and he is beautiful!

Lastly, Auntie Sarah with Ladybug and cousin Evaine. Aunt Sarah lives in FL and came for the week to spend time with the family. Here she is with her two nieces who she loves very much.

30 & 3 Reasons

"Created to be, the perfect one for me" is inscribed inside of both Mr. Lovebug and my wedding rings. He is indeed, the perfect creation and counterpart to who God made me to be and today he turned 30 years old.

Listed are 30 Reasons that I love my husband

1. He is extremely talented and gifted musician. The first time I met Mr. L 10 years ago, he was playing his guitar and singing in a little white chapel of a church. This is my very first memory of him.

2. He is passionate for bringing people to worship our God and Savior. In August of 2000, I laid eyes on a man who was passionate for worshiping and leading God's people into his presence. Today, I continue to witness his fervor and love for worship each and every week.

3. He loves the Lord. This is evident in all He does.

4. He is goofy. One of the first impressions I had in meeting Lovebug for the first time, is he loves to goof off. He has a great sense of humor.

5. He is humble. One of the greatest acts of love is giving yourself away. Lovebug has always served me as his wife and now his family and always puts our thoughts and desires first. He will always give full credit to God when it comes to his talents.

6. He is romantic. Candles and a homemade meal, personalized songs written just for me, flowers for each special occasions, picnics on the beach, a custom ring made for valentines' day, he is very good at being the king of romance.

7. He loves surprises. Lovebug surprised me on Christmas Day to tell me we were going to Hawaii for our honeymoon. He had another special surprise for Ladybug's birthday this year. I love how he is full of surprises.

8. He is very smart. I can always look to Mr. Lovebug to answer my philosophical, spiritual, and trivial questions.

9. He is a great writer. I love reading his outlook on life through his writings. I am hoping one day he will publish his thoughts and experiences.

10. He loves his church family very much.

11. He loves being Papa, His eyes light up when he talks about his ladybug.

12. He is a very patient man. He encourages me in this area of weakness in my own life.

13. He is the eldest born. I am the youngest. We are a match made in heaven.

14. He is OCD when it comes to germs. This is great trait to have for a husband when your immuno-suppressed and your daughter was born premature.

15. He loves to change things up frequently. You may have noticed this with his hair styles. If he ever loses his hair, he may start collecting man wigs.

16. He knows the Bible and its truths very well. I can always come to him with questions I have regarding theology or if I can't remember a particular person or story in the Bible.

17. He is real. He tells you like it is. This can get him in trouble sometimes, but I appreciate his authenticity and desire to uphold what he believes is right.

18. He is very discerning. He is very gifted in discerning others and situations.

19. He is super cute and cuddly. I love being wrapped up in his arms.

20. He is intense. There is just something intense about Mr. Lovebug's personality. I think it shows in his eyes. I love it.

21. He enjoys the outdoors. We both love to spend time outside with the family whether we are going for a stroll, taking a trip to the beach, or going to watch the sunset.

22. He is responsible. He is a very responsible and reliable individual.

23. He is a very joyful, upbeat person. He has a great outlook on life.

24. He is an incredible chef. He loves to cook and is great at throwing together recipes.

25. He is very artistic and is the craftier one of us both.

26. He has a servants heart. I can always count on my husband to help clean, do laundry, whatever I ask around the house. He was brought up well.

27. He puts his family first. Lovebug has many responsibilities with his job, ministry, as a photographer, ect., but I can always expect him to put his family first.

28. He makes Little ladybug & I laugh and smile like no one else.

29. He has a tender heart. My Lovebug may not admit he is tender. But deep down inside, he has got such a great tender, caring, and loving heart.

30. He is faithful. He has been with me by my side, through the thick and thin in life. I can always count on him to be the loving, selfless, caring man that he is.


_______________________________________________________________________

3 Reasons I love my 3 year old lungs

1. I have never had the opportunity to breath like a normal, healthy individual before my transplant. My lungs were constantly congested with mucous. I was always coughing. Breathing was a battle. Any form of physical exercise was a burden. With my new lungs, that all changed. I did not think this side of heaven, I'd ever experience that. It is an amazing feeling.

2. I have the opportunity to use my days to do what I love. I absolutely adore being a mother. I love caring for my family. I love hanging out with my friends. And I enjoy being connected to the medical community and encouraging others going through similar circumstances. I am so thankful for the gift of life.

3. My life is a reflection of God's mercy and grace. My life is full of miracles. The day before my call for new lungs, I experienced a collapsed lung already totally relying on a ventilator, my future was looking very dim. It was the very next day, my husband's birthday that I got the call for a second chance at life. I found out after my transplant, the chances of finding matching lungs for me were less than 1%.

My God is amazing and can do the extraordinary!

I want to remind others, if it wasn't for the decision to give the gift of life my donor made, I wouldn't be here today. I am so thankful for their life, their family, those who influenced them, and the decision they made to become an organ donor. I will forever be grateful to my donor and the beautiful lungs that has allowed me to live my sacred life.
Please consider giving the gift of life.

Psalm 39:5 NLT

⁵ You have made my life no longer than the width of my hand. My entire lifetime is just a moment to you; at best, each of us is but a breath.”

*breathe picture taken from, shiningsungardenworks.com

Dinner Conversation

Bring back the family dinner.

I love this idea of making family dinners a priority. I really appreciate what the author of this new book has to say regarding food, the importance of dinners, and how our families can grow when making it a priority.

{Excerpt from Laurie David in www.grist.org article. About her new book: The Family Dinner: Great Ways to Connect With Your Kids, One Meal at a Time }

Q. A lot of people are paying more attention to where their food comes from, but has the social aspect of how we eat our food been missed?

A. As the family dinner has declined over the past 30 years, all these disturbing health problems have increased -- obesity and diabetes. We're feeling the social ramifications of not doing this ritual the way our parents and grandparents did.

The other piece of this that's creating challenges for parents is the computer and the cell phone and the text messaging. Everything about our current lifestyle is pushing away connectedness. That's why it's so important to put your foot down and recapture this ritual. It's the key way that people are civilized. It's how you learn manners. It's how you get to taste new foods and develop a palate. It's how you learn to listen and have a conversation. It improves your vocabulary. It's where you develop your debating skills. Hopefully at the table you're discussing world affairs and learning to have a social conscience.

Q. You talked to a lot of interesting people about their own family dinners. Did you take any ideas from those back to your own house?

A. Yes. I was very inspired by the interview with Bobby Kennedy -- in his family growing up, you not only had to participate, you had to do a book review, or you had to write a biography [of a prominent figure], or you had to memorize a poem.

I love this old-fashioned idea of poetry at the dinner table. Kids used to learn poetry in school in first or second grade, and you came to the table and you recited it. Everybody applauded, and the self-esteem that the kids got from it was incredible. I didn't teach my kids poetry, but my boyfriend has a 7-year-old and we're teaching her poetry.

Q. I still find that it's really worthwhile to make the effort to sit down and have dinner together, put aside our laptops and The New York Times. You're inspiring me to make that a ritual.

I also appreciated your admission that it's not always easy to have a good conversation at the dinner table.

A. You have to create it. I can't tell you how many people I interviewed who said, "We had regular family dinner, but nobody talked." For some people, the conversation is as challenging as preparing the food. This book is going to help those people.

I come from the philosophy that if you're at the table, you have a responsibility to participate. I think we have to teach our kids that, too. You don't get to just come and eat and then leave. You have to be excited about what you're eating. You have to tell the person who prepared the food how good it is. You have to contribute in some way.

_____________________________________________

What great memories or traditions related to dinner do you have and cherish?

Do you struggle with making dinner a family event?

What do your conversations include at the dinner table?

How is family dinner special for you?

Adopted

Adoption is a beautiful picture of love.

One morning in May of 1982, a healthy baby girl was born in New Jersey. At the age of one week, I was placed in the loving arms of my adoptive parents, Donald and Agnes.

This is just another part of my journey. I really appreciate those parents who have made the decision to adopt in some capacity. My parents are my heroes. Three out of six children in my family are adopted. I believe my family is an awesome example of what a blessing adoption can be.

My husband and I hope to show that same love to other children in need of a loving family. We are really excited for what the future holds.