Goodbye Summer

Wow... I cannot believe how fast Summer went by. I also cannot believe it has been so long since I last blogged. :(

Emma has been relatively healthy. She has had a lingering cough and her recent cultured showed Haemophilus influenzae and Staphylococcus aureus. These are common things for CFer's to culture. Emma cultures Staph A. frequently and has had H. Flu previously. Because she has them along with a cough, they put her on a 3 week course of an antibiotic. They also asked us to up her pattings to 3 times a day. This is difficult to do in the Summer though because we can hardly keep her in the house when the weather is nice! She is such a social butterfly!

Emma is growing very fast. She is making friends with some older kids in the neighborhood. She has another friend Michael who she ADORES. They call each other on the phone and talk constantly!

I will try to find time to blog more. I love going back over the past blogs and reading about how Emma and our family is changing. I hope so day Emma will read over it and see how much she is loved.

Day 7 - School

David and I are determined to have Emma live a 'normal' life. No bubble. We decided a long time ago that a life lived in a bubble is not worth living. We want her to laugh, play, and we want her to be a happy and outgoing little girl.

Going along with this philosophy, we are determined to have Emma attend a 'normal' school. Currently, she is attending a program 1 day a week at an Academy near us. In the summer she will start attending 2 days a week. She absolutely LOVES it there. The teachers a wonderful and they are very good about accommodating her needs (such as meds, extra hydration, etc.).


We realize that many people are choosing to homeschool their kids these days. In our opinion, that choice is not the best one for Emma. As long as she can physically attend school, we will do our best to provide her with a safe place go. We will be continue to be very involved with the school and the teachers.

Day 6 - Clinic

Emma goes to the University of Minnesota Pediatrics CF Center. She has a clinic appointment every 3 months.

When we go to the clinic, we always have our car parked by the valet. We decided long ago that it was worth the extra couple of dollars. Clinic day can be stressful and this is one less thing we have to worry about since parking can be a nightmare.

Once we check in, it usually does not take long before they call her back.

During that appointment she is weighed and her height is measured. Then we are taken to the exam room. Here they take her blood pressure, heart rate, and oxygen levels. Often they will take a culture from her throat to see if she has any bugs. We are also shown where she is on the growth chart. If her weight falls below the 50th percentile, we discuss ways to help her gain more weight and what might be contributing to her weight loss.

At these appointments we might see any of the following people: Nurses, Dietitian, Social Worker, Respiratory Therapist, the Doctor or Nurse Practitioner. Because they do not want to have 2 CF'ers in proximity to one another, they keep us in this room and everyone comes in to see Emma.

Once a year, she gets blood drawn to check all his vitamin levels and a chest xray. We can spend anywhere from 45 minutes to hours there on clinic day depending on what she is having done and how she her health is at the time.

I always have questions, whether something has changed with her health or if I have read an article on a new treatment. Our clinic staff s always happy to discuss my concerns with me. They are wonderful. We could not ask for a better team of people to be caring for our daughter's health.

By the time we leave, Emma is worn out from all of the poking and prodding.

DAY 5 - Diet, Fat and Calories

High fat, calories, & salt!

If there is anything good about Cystic Fibrosis, it would be that you get to eat as much as you want. People with Cystic Fibrosis should eat a diet that is high in calories, fat, and salt.

People with Cystic Fibrosis need to eat about twice as many calories as is normally required for someone their age. Many children with CF require feeding tubes, if they are unable to put on enough weight.

Why?

Cystic Fibrosis is a genetic disease that affects the sweat glands, the lungs, and the pancreas. People with CF have problems with the balance of salt and water in the body, which cases their bodies to make thick mucus. This mucus can keep the intestines from absorbing important nutrients like fat and vitamins from food. This can cause people with CF to be underweight for their age. Therefore, people with CF need extra calories and nutrients to help them fight infection and keep their lungs strong.

We are very lucky because Emma has always been a very good eater. I remember watching her with amazement at 1 year old eat a 6 inch meatball sandwhich from Subway and still have room for potato chips. :)

Emma loves fruits and vegetables, so we find ways to add some extra calories (olive oil, butter, cheese, cream, etc.). Our dietician even suggested we let Emma have her morning ceral mixed with ice cream instead of milk!

All of these high fat foods are definately not good for mom's waistline! I do my best to serve her food that David and I eat. I just add the extra calories to hers.

In our 'low fat' society it can be very difficult to get Emma all of the calories and fat she needs. Every day I see something on the TV about the fight against childhood obsesity. I wonder how these mixed messages will affect Emma as she grows.

Day 4 - Illnesses and admissions

Emma has cultured a few of the normal CF 'bugs' (Staph A, Influenza H.). These 'bugs' required her to be on antibiotics for a few weeks at a time. We are thankful she has not yet cultured any of the more serious bugs.
I am happy to be able to tell you that Emma has not been hospitalized at all yet due to her Cystic Fibrosis. Many children who have CF have had several hospitalizations by this age (3).

Why do we feel Emma has been so 'lucky'? There are many factors:

• First and foremost, she has one of the best CF teams in the country! We could not ask more from them.
• Hours and hours of preventative treatments and medications.
• Keeping her at a good weight.
• Avoiding unhealthy conditions (such as smoke, standing water, etc.)
• And some luck...

We are painfully aware of what CF does. We work hard to control the things we can while still allowing Emma to have a 'normal' life. We want her to be a kid! Run, laugh, be a little girl!

Day 3 - Medication and costs

This is Emma’s list of daily medications.

• 2 mL of Albuterol + 4 mL of Mucomyst inhaled 2x per day in a nebulizer
• 7 Creon 6 capsules with every meal or 3 with a snacks. Which equals about 24 pills a day or 810 pills a month.
• 1 Omeprazole capsule
• 2 puffs of Qvar inhaler 2x per day
• 1 mL of CF vitamins 2x per day
• 1 mL of liquid Vitamin D 1x per day
• Liquid Zyrtec
• 30 minute Vest treatment 2x per day

Picture of the enzymes Emma takes in 1 month

If Emma is sick or cultures bacteria in her lungs she will also take an antibiotic.Our out-of-pocket expense for all of these medications is more than $200 every month. $200 just for her prescriptions. That does not include her appointments, procedures, equipment, and supplemental nutrition. Her Vest system alone was more than $15, 000 of which we had to pay $1500 out of pocket.

Emma doing her vest treatment with Dora.

We have never qualified for any type of assistance program. We are mostly a 1 income household. On my income we make too much to qualify for the most programs. Unfortunately, after paying premiums, medications, and medical bills, we do not have enough leftover to comfortably pay the bills.

I am thankful we have insurance, but the costs are astronomical. There needs to be a way for Middle Class families to care for their children without bankrupting themselves.

31 Days of May - The First Year

Day 2: The First Year

The first year was filled with so many emotions. We had so many things to learn.

In the first month of her life we had several appointments at the University of Minnesota.

• Emma had a sweat test.


• We met with our CF team: doctor, nurses, respitory therapist, genetic counselor, dietician, and a social worker.


• Emma started on enzymes to help her digest her food.


• We learned how to do physical therapy (pat pats) which involved us pounding on Emma's back with our hands cupped.


• Emma started twice a day nebulizer treatments.

I am sure there is alot I am forgetting. It was a whirlwind of activity. So much to learn. So much to work through.

In the first month of her life there were many appointments. At some point Emma moved to monthly appointment. She had monthly appointments at the U of M for the first year of her life. Our team was wonderful, especially the nurses. I called them often. Emma was our first child, so I never knew what was normal. I called those nurses weekly asking all kinds of questions. The nurses always called me back quickly and reassured me that my baby girl would be fine.

During the first year, Emma also went through:

• She had 2 Infant Pulmonary function tests


• Took countless medications (antacids, enzymes, vitamins, antibiotics).


• She got poked, weighed, examined, and cultured.

In the first year of her life, I did not believe Emma would be ok. Every morning when I woke would look into her room expecting her to be gone. My dreams were horrible, full of images of her being taken from me and of her dieing. I lived with so much guilt for giving this awful disease to my daughter. I was also very afraid of germs, scared to touch my daughter because I feared it would make her sick. I washed my hands until they got so dry they bled, stayed up half the night disinfecting door knobs, the sink, and washing everything else in the house. I researched Cystic Fibrosis on the Internet for hours on end; hoping to find something that would tell me my baby girl would be ok.

The first year of Emm'a life was difficult in learning about CF and dealing with all of the emotions surrounding it.

Throughout all of it, Emma thrived.

She grew into a wonderful, beautiful, curious, and happy little girl. She stayed healthier than we could have imagined. She started to crawl, then walk, then talk and all the while we grew to love her more with every passing day. We learned so much that first year. The biggest lessons we learned from a little girl. Our little girl who, even after all the medications, treatments, procedures, continued to laugh. She laughed big belly laughs. She smiled brighter than a twinkling star.

Without her knowing it... she taught us what life is really about.