Growing Up with a Chronic Disease

Growing up with Cystic Fibrosis was a challenge but my parents and family helped me live a very happy and vibrant, young life.

At a very young age, my body was dependent on many medications to help me battle against the inward physical deterioration that was taking place in my lungs. I was also dependent on enzymes that I learned to swallow to help my body digest my food. But most of all, I was dependent on my parents and family who so awesomely took on this challenge and placed it in God’s hands. Each and every day they so creatively found ways to allow me to live my life as a normal little girl with such abnormal routines.

Now, as the parent of a child with special needs I am so grateful for all the sacrifices my parents made on my behalf. Having a child with a chronic disease; your constantly in thought of medications, equipment, learning new medical lingo, huge expenses, hospital stays, doctor visits, limitations, emotional needs, and what their future may hold. I am sure the list could go on.

I would love to hear a perspective from a child with a chronic disease or parent and how they can relate to these sacrifices. How they look upward, when your world comes crashing down on you. What creative methods you have used, that have helped your child. And what good have you seen from such a terrible fate?

As I look back on the many wonderful things that my Heavenly Father has done in my life and think of how He used my CF and certain life circumstances, I can only be amazed and thankful for how He has used these burdens and turned them into blessings, both for me and for those around me.

“For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” {Psalm 139:13, 14}


The Hospital: A Poem

The Hospital

A building, a structure

A haven for the unwell

Where life & death are prevalent

A place so many dwell

Its outside frame seems somewhat dull

But inside; it’s quite a mix

The people there are what really matter

Without, it would be nix

Some enter it with confidence

Others with high hopes

Some come in with scared eyed looks

Others, unable to cope

Hearing the sad news of a loved one

An accident, disease, or scare

That led them to this place

It all seems like a night mare

The people here are universal

Races mixed and matched

People come in all shapes and sizes

From age 100 to just being hatched

The environment is distinctive

Some areas silenced with peace

The ER is certainly not one of them

Where most are barely at ease

The outwear is unique as well

For those who choose to stay

They wear scrubs, white coats, suits & stethoscopes

The patients wear what they may

It’s ironic that this building

Can hold so many mixed emotions

If only doctors could cure all

With some magic potion

This is a place for the dying

It’s a place for the bereaved

A place of caring, loving hearts

And hope for the well to soon leave

This place is called, a hospital

Those who enter it should know

That its worth all the pain and strife

If you leave from it and grow

-Tricia Lawrenson

{I wrote this several years ago, after living a good portion of my life behind closed doors in The Children's Hospital of Philadelphia and at Duke University Medical Center. Not only can a parent and patient of a chronic illness like cystic fibrosis can relate to this poem. But so many more lives who have been dramatically changed when walking through those doors.}



When meeting a little boy this past summer, something inside me clicked. I had an "aha" moment about my firstborn. This little boy had something called, apraxia. As his mother explained this disorder and how it related to him, I couldn't but feel an instinctive, gut feeling my daughter shared the same characteristics.

I told my daughter's therapists, doctors, anyone who was taking care of her of my suspicions. We even went to another hospital to get a second opinion to confirm these suspicions. They all agreed, my little ladybug showed some signs and most likely had apraxia.

When ladybug speaks, it is hard to make out what she is saying. She has a hard time getting words out. When she first learned to speak, it sounded like "ba ba ba ba..." Mama sounded like, "Aba" and so on. Her speech is slowly progressing and we are so excited. She still struggles to sound out all of the correct vowel sounds. And she also has a hard time saying multiple syllables. Her "go" sounds british, and her no sounds like, "mo." Her "oh no" is the cutest thing in the world. It sounds like her favorite character, "elmo." So if your around her and she were to drop something, you may hear her referring to that little red guy with googly eyes. But really, she is saying, "oh no."

A great website I found helpful when learning about apraxia.

What is apraxia?

Apraxia of Speech is considered a motor speech disorder. For unknown reasons, children with apraxia have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech may also be called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what it is called the most important concept is the root word "praxis." Praxis means planned movement. So to some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder.



Garden Gratin

Garden Vegetable Gratin

A layered potato casserole, a gratin (pronounced grah-TAN) is a French dish named for both the technique and the dish it’s baked in: a fairly shallow, oval, oven-safe baking dish. Nonetheless, you can make it in a standard 9-by-13-inch baking dish, more in keeping with standard American cookware. Here’s a perfect version for your holiday table: a side dish that just may even conquer the main course!


3 pounds russet potatoes, peeled

2 tablespoons unsalted butter

4 ounces shallots, diced

1 medium carrot, diced

1 small zucchini, diced

1 cup frozen peas, thawed

2 cloves garlic, minced

2 tablespoons stemmed thyme

1 teaspoon salt

1/2 teaspoon freshly ground black pepper

1/4 teaspoon grated or ground mace

3 cups reduced-sodium vegetable broth

1 cup low-fat or fat-free cream


1. Position the rack in the center of the oven and preheat the oven to 350 degrees Fahrenheit. Peel and thinly slice the potatoes. Place the slices in a bowl, cover with cool water and set aside.

2. Melt the butter in a large skillet over medium heat.

3. Add the shallots, carrot, zucchini and peas. Cook, stirring often, until softened, about 3 minutes.

4. Add the garlic, thyme, salt, pepper and mace. Stir well to warm through. Remove from the heat.

5. Layer the potatoes and vegetable mixture in a 10-cup gratin or 9-by-13-inch baking dish by first blotting some potato slices on a paper towel, then layering them across the bottom of the dish. Add some of the vegetable mixture, spread it over the slices, then blot dry more slices and add them as another layer. Keep layering the casserole, like a lasagna, ending with a layer of potato slices.

6. Whisk the broth and cream in a large bowl. Pour it over the contents of the baking dish.

7. Bake, uncovered, basting occasionally, until it is golden and most of the liquid has been absorbed, about 2 hours.

Yield: Makes about eight side-dish servings.



up and down

Life post transplant has its ups and downs. Having a cystic fibrosis (cf) gene free set of lungs to breathe with gives life an up feeling every day. Trading one set of problems, issues, & concerns for another can be a downer.

Then there is my special case: getting very sick, very quickly, being on a ventilator for 4 months, going through chemotherapy... all make the questions of why variable. I have had some memory problems since my 2008 transplant. They could be related to all of my special case scenarios or possibly the medications I am now on. I decided along with my doctor to switch my main immunosuppressant medication. I did so, in hopes my memory would improve. When I made this big move, the first couple of days I had my first sinus infection since last spring. It seemed a coincidence. Then my stomach was really, really bothering me. My doctor thought, not so much a coincidence. And so now, I refriend my old immunosuppressant medication and risk a bad memory. My phone is now my recorder of all things, and I am trying to adapt as best I can. The palm-pre for free was a great deal! My stomach is feeling much better. And as we all know the saying, "When Mama is not happy, nobody is happy." I can officially say, "I am feeling better and am happy again. Very Happy."

This week I am thankful for donors, thankful for cf free lungs, thankful for the medications that keep me alive. But most of all, I am thankful for a happy stomach. Smile.


Zucchini Boats

Zucchini Boats With Ricotta-Basil Mousse

Use the fragrant cheese stuffing with any mild vegetable, such as bell peppers, mushroom caps, baby eggplant or tomatoes. Save the scooped-out zucchini pulp for risotto or pasta sauce. You can use a mini chopper to chop the herbs quickly, but do not use it to combine the mousse ingredients because it will liquefy the ricotta.


6 small zucchini (about 1 1/2 pounds)

Cooking spray

1 cup loosely packed fresh basil leaves, finely chopped

1 cup (8 ounces) ricotta cheese

1/2 cup loosely packed fresh flat-leaf parsley leaves, finely chopped

1/4 cup (1 ounce) grated fresh Parmigiano-Reggiano cheese or other hard cheese

2 tablespoons hot water

1 tablespoon fresh lemon juice

1/4 teaspoon salt

1/4 teaspoon freshly ground black pepper

Parsley sprigs (optional)


1. Preheat oven to 450 degrees Fahrenheit.

2. Cut each zucchini in half lengthwise; scoop out pulp, leaving a 1/4-inch-thick shell. Reserve pulp for another use. Arrange zucchini shells in a single layer in a 13 by 9–inch baking dish coated with cooking spray.

3. Combine basil and next 7 ingredients (through pepper), stirring well with a whisk. Divide mixture evenly among shells, pressing gently. Bake at 450 degrees for 20 minutes or until zucchini is tender. Garnish with parsley, if desired. Yield: 12 servings.



November: Premature Awareness Month

Here is some information about common premature health risks.

Our little Lovebug had surfactant given to her before birth which gave her a greater chance of survival. Because of the oxygen and respirator machines she was on, she had ROP, eye muscle surgeries, wears glasses for nearsightedness, and Chronic lung disease of prematurity.

We are thankful each day for the March of Dimes and the strides they are making in research and coming up with better solutions for extremely premature infants which are at great risk.

The following article is from the March of Dimes website. It talks about research being done and treatment.

"Premature babies are at risk of many serious medical complications. One of the most common of these is respiratory distress syndrome (RDS). Babies with RDS struggle to breathe because their immature lungs do not produce enough surfactant, a protein that keeps small air sacs in the lungs from collapsing. March of Dimes grantees helped develop surfactant therapy, which was introduced in 1990. Since then, deaths from RDS have been reduced by two-thirds.

Although surfactant treatment was a major breakthrough, March of Dimes grantees continue to improve it. About 20 percent of babies with RDS do not respond to surfactant treatment. Natural surfactant contains four known proteins, called SP-A, SP-B, SP-C and SP-D, but surfactant treatments contain only SP-B and SP-C. Grantee Ka Yee Christina Lee, PhD, of the University of Chicago is studying the structure and function of SP-B in order to design an improved synthetic surfactant that can mimic the activity of the natural protein and be effective when the one currently available fails. Along with surfactant, many babies with RDS receive additional oxygen and mechanical breathing assistance. These treatments, though lifesaving, can contribute to lung injury and a chronic breathing problem called bronchopulmonary dysplasia (BPD). Up to 50 percent of the smallest survivors (under about 2 pounds) develop BPD. Machiko Ikegami, MD, PhD, of the University of Cincinnati, is investigating whether adding SP-D to commercial surfactant treatments will help prevent BPD. This surfactant protein appears to help the immune system fight off lung infections and may help prevent the inflammation that contributes to lung injuries.

Lifesaving oxygen treatment unfortunately contributes to retinopathy of prematurity (ROP), a leading cause of blindness in premature babies. It results from abnormal growth of blood vessels in the retina. March of Dimes grantees are seeking to find out how too much oxygen triggers this response. The retina is the delicate light-sensing tissue that lines the back of the eye and sends messages to the brain. In severe ROP, the retina may detach from the back of the eye, resulting in loss of vision. As many as 16,000 premature babies in the United States develop some degree of ROP each year. The smallest babies, those born at less than 32 weeks gestation, are at the highest risk.

Laser and other treatments can sometimes help preserve vision in babies with severe ROP. Grantee Guo-Hua Fong, PhD, at the University of Connecticut Health Center in Farmington, is seeking to find out whether a specific gene becomes overly active when there are high levels of oxygen, possibly triggering the abnormal growth of blood vessels in the eye. If so, it may be possible to develop preventive treatment by inactivating this gene. The outlook for premature babies has improved greatly. However, many of these babies face serious complications and lasting disabilities. Many March of Dimes grantees seek new ways to improve the care of these tiny babies, and others strive to prevent premature delivery" {March of Dimes}

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?

Book cover.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?


thoughts of yumminess

Mixed Greens with Apples and Cranberries

Thanksgiving Cranberrysalad-1
This is one of those great, last minute dishes. With all the rotating dishes in the oven, it is nice to toss a quick salad together that doesn't need its turn to bake.


5 oz package of mixed greens
1 large Honeycrisp apple
2/3 cup dried cranberries
1/3 cup crumbled feta cheese
Lemon juice
1/3 cup walnuts, optional
Balsamic vinaigrette
homemade or store bought




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.


Birthday Plans

Little Ladybug's Birthday is soon approaching. Not sure if her theme will be this...

Or this...

Hard Choice.

Maybe I'll let her decide.

A Little About Me: 65Roses4PattySue

My name is Patricia Suzanne. I once had a blog called, 65roses4pattysue.com. I go by the nickname, Patty Sue.

65Roses represents a story about cystic fibrosis. I was born with this genetic lung disease at six months of age. I still live with the disease except for one part of my body. My lungs.

My blog was an enjoyable outlet for me to show my family and friends photos and updates on my cystic fibrosis and life. It also was set up to inform those who knew me of a trust fund for my large medical expenses.

Factoid: Cystic Fibrosis is a "chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond." {CFF.ORG}

The predicted median age of survival for a person with CF is in the mid-30s. I am 28.

This life-shortening, genetic lung disease has been a challenge to live with but has also helped me in the development of who I am today. I believe that God created me with a perfect plan, and that nothing in my life has been accidental.

“For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.” {Jeremiah 29:11}


Things I love about life and my lovebugs

* When my ladybug says, "ma-ma" it melts my heart. I waited patiently 32 months for her to say it for the first time. It was so worth it.

*When my husband takes me on a date. Especially if it involves horses!

*Therapist for special needs kids who love what they do.


*Breathing unaware (I am guessing this will only be fully understood by post-lung tx patients)

*Organ Donors: XOXOXO

*New Worship Music: Love is on the Move by Leeland


This is...

"Se-wious" -Ming Ming

Date Night: Secretariat

My husband and I went on a lovely date. We went to the cheapest theater in town and ate popcorn and candy. It was delightful and we thoroughly enjoyed this feel good movie. It was about the greatest racing thoroughbred of his time, Secretariat.

The movie begins with a beautifully written verse. Job 39: "Do you give the horse his strength, or clothe his neck with a flowing mane?" I really enjoyed it. My husband walked away saying it was his, "favorite horse racing movie." The ending left you with the tune, "Oh Happy Day" lingering in your mind. It was a happy day indeed.

Lovebug In Flight

Here is my little Ladybug.