Clinic Visit December 12, 2012

It has been awhile since I have written an update. I suppose in my mind no news is good news. However, we got some good news yesterday so I thought I would share. Faith had her CF Clinic Visit yesterday. It felt weird driving to the Children's Hospital as it had been 2 months since her last visit. When we first started this journey we were going once a week so it is nice that the visits are spread out. Not to mention it means our little girl is doing great.
      Faith met with her team of doctors and they were all so pleased with how much she is grown. She is a little monkey. She now weighs 16 pounds 8 ounces and is above the 75% for her age. That is amazing news and the doctors are so happy with her progress considering when she started she was in the 5th percentile for weight. We like to call her our little porker. When she met with her nutritionist Sarah, she could not believe how much food Faith was eating. While she was in the room Faith devoured two things of sweet potatoes in less than 5 minutes. We did have to up her enzymes she takes with every meal as she is not absorbing all of the nutrients and not staying satisfied. She was taking 1/2 enzyme with every feed and is now onto 1 enzyme per feed. We are hoping this will help keep her fuller longer instead of eating every hour!
      In the middle of the visit we also had her RSV shots done. This was her second round of 5 shots total. Respiratory syncytial virus (RSV), which causes infection of the lungs and breathing passages, is a major cause of respiratory illness in young children. She was given the two shots at the same time in her leg. She did really well with these. Her sister Kaylee has them done as well so at least she doesn't go through it alone. After her shots were done the Doctor came in and listened to her lungs. She said they sounded wonderful and Faith looks amazing. She is very pleased with how she is doing.
    While at clinic Faith gave a poop sample to test her pancreas. A stool analysis is done to see how well the pancreas is working and if pancreatic enzymes are reaching the intestine. Increased fat in the stool or low enzyme levels can mean that a person has digestive or pancreatic problems. As I understand anything under 100 is not functioning and Faith was at 104 a few months ago so it will be interesting to see the results. We also started bloodwork to get a baseline. The blood drawn tests for her CBC (complete blood cell count), red blood cells, white blood cells, liver enzymes, vitamin D, blood clotting ratio, platelets, electrolytes (sodium, potassium, chloride, etc), and antibodies. This was the first time she had blood drawn. I went back in the lab with her and not sure if I can do it again. I have never felt so helpless watching my child scream and kick and not being able to do a thing about it. After what seemed like an eternity the needle was out and I picked her up to comfort her. I asked if we were done, but the nurse said we need to make sure we have enough. As they were filling the vials I noticed they were running out of blood and then the words came we have to poke her again. I could have killed the nurse at that moment. So they poked Faith in the other arm and she was so hysterical she was hyperventilating. Both of her arms bruised instantly. They ended up taking 5 vials and as soon as this one was done I was out of there. It took awhile to calm Faith down, but eventually she did and then fell asleep. It was a rather long day, but all things considered we got wonderful news that Faith is doing great. It might not be much for some people, but to us it means the world. Until there is a cure we will strive to keep our little girl as healthy as possible. She does not go back for a few months so now she gets to just focus on being a child.
    

A Simple Prayer

Today we received a very special gift in the mail. We received two quilts that were made and given to us by our family member Jean Garvin. These quilts were taken to her church and blessed with a prayer for the girls. Brandon and I listened to the prayer tonight with tears in our eyes. We were so touched that a group of people were thinking of Faith and her Cystic Fibrosis. This gift means more to us than words could ever express. Below is a picture of the quilts and the prayer from the service. Prayer is a powerful thing. THANK YOU THANK YOU THANK YOU!!!

 

Front of Quilt

Back of Quilt

Front of Quilt #2

Back of Quilt #2

 

Clinic Visit October 16 2012

Faith had her clinic visit this morning. She was going once a week and we now go every 6 weeks. Most clinic visits we are there anywhere from 2-4 hours. Clinics involve seeing her team of doctors (nurses, doctor, nutritionist, physiotherapist, respiratory doctors, gastrointestinal doctor, and a pharmacist). Sometimes she sees the whole team while others she may see less. We learned a lot in clinic today so forgive me for being all over the place in this blog.
     Today we were very anxious to go to clinic as Faith has been acting different. Over the last 24 hours Faith has thrown up twice. The first time was while she was sleeping. We had to strip her sheets, change her, bathe her, etc. The other time was last night and it went everywhere (all over the couch, floor, her, you name it). She easily threw up one bottle if not more. She threw up so much and so hard that she pooped her pants as well. She has also developed a little cough, had a runny nose, been sneezing, etc. She has not slept much at all and Brandon and I have spent much of the last 24 hours trying to keep her as comfortable as possible. We are exhausted, but when we look at her and realize what she is going through we quickly get over our exhaustion. Now I know most of you may think she just has a little cold so what is the big deal. The big deal is Faith cannot fight off things as easy as other kids. She has mucus in her lungs so everything sticks. Bacteria can grow in the mucus causing infection in the lungs. We want to keep those lungs as healthy as possible to prevent long term lung damage.
    Ok enough of getting side tracked. So we went to clinic this morning and explained everything that was going on with Faith.  Faith even spit up 3 times while we were there (went through 3 outfits).They decided to run some tests to rule out any bacteria. They did a throat culture (same test we have as adults to test for strep throat) and she also had to be suctioned (they stick a tube down her nose that goes into the back of her throat). Both tests will be sent to the lab and we should get the results early next week. If she tests positive for Pseudomonas (the bacteria she had just over a month ago) she will be back on the TOBY treatment (see earlier blog for explanation) for 3 months. We are praying the test comes back negative. She has had her nose suctioned now three times and you would think we would be used to it by now but seeing her scream like that makes you feel awful as a parent. There are so many times when we think this isn't fair. She didn't do anything to deserve this, but then reality slaps us in the face as we know this is the hand that has been dealt so we have to make the most of it.
       The positive news from today's clinic is Faith is now in the 75% percentile for length and weight. This was great news as she was not even in the tenth percentile when she started this process.
      We also learned some interesting news from the social worker. In Canada Cystic Fibrosis medicine is covered until they turn 18 years old. Once they turn 18 it will be critical for us to have the best benefits as medicine is no longer covered. Without benefits medicine usually runs about $50,000 A YEAR!!!! WOW, we were shocked and at the same time so thankful it is covered for now!! We will definitely be doing some research to get the best benefits.
       Now we wait to find out the results from the test. We are keeping are fingers crossed for no bacteria. Faith came home and ate before going down for a nap. We were at clinic for 4 hours today and they definitely exhaust her.
   

Video

Here is a video I got from another mom's blog. It helps put things into perspective for me.

Beads of Courage

On September 11, 2012 Faith went in for her regular clinic visit. At this visit a lady came into the room and told us that the Alberta Children Hospital had started a new program called Beads of Courage and the Cystic Fibrosis Clinic was the first patients to get to try it out. She was given a necklace with her name and a few beads with a journal as well that read the following:

     BEad you... because nothing can change who you are. No matter what happens, no matter how your body changes as you go through your treatment, YOU will always be YOU. Like your parents, brothers, sisters, friends, nurses, child life specialists, and doctors, Beads of Courage will be here to help you through. You have courage.. BEad YOU!! As your Beads of Courage Collection grows, it will be something you can use to remember and re-tell your unique story of courage. Your story isn't just about what it happening to you, it is about how you are taking control of a tough situation.

This program is designed to help remember Faiths journey with Cystic Fibrosis.
Below is a background on the beads of courage program for those who have not heard about it. If you want to learn more you can go to the website www.beadsofcourage.org We are so excited to have these boards and think it is a neat idea to track her journey.

Our Mission
Caring for children coping with serious illness, their families and clinicians by helping them to RECORD, TELL and OWN their story of COURAGE through beads.
Our Values
Advance the science of caring; Set and exceed the standards for the psychosocial care of children coping with serious illness; Be a source of support and encouragement-connecting the kindness of others with the Courage of the children we support!
Our History
Jean Baruch, developed the first Beads of Courage, Inc. program while working on her PhD in Nursing at the University of Arizona, College of Nursing. Her inspiration came from her clinical practice and from her experiences as a camp nurse at one of Paul Newman's Hole in the Wall Gang Camps. With the financial support of her family and friends, Jean developed and piloted the Beads of Courage Program at Phoenix Children's Hospital in February 2004.
Today, Beads of Courage, Inc. is providing the Beads of Courage® program in over 140 children’s hospitals throughout the United States, Japan, New Zealand, United Kingdom and Canada. The Beads of Courage® Program has become the standard of care for supporting children and their families during their treatment for cancer and other serious illness. With the encouragement of families, supporters, bead artist community and others, Beads of Courage CANADA was incorporated in 2011 and launched its first program in January 2012. Beads of Courage CANADA was launched with the support and leadership of Executive Director, Victoria Plouffe and the Board of Directors.

Beads of Courage Necklace

Toby and the Bacteria

Back in August Faith was having a lot of snot and boogers. It didn't matter how many times I cleaned her nose out she was sounding congested. I never knew someone could have so many boogers. Just to be safe I called her nurses Melissa and Lori to inform them of what was going on and ask them for advice. They asked us to bring her in just to be safe.
   On August 1st, 2012 we brought Faith into the CF clinic. They decided to suction her again as she sounded congested. So once again they stuck a tube into her nose that went down the back of her throat. I decided to not watch again and was expecting her to scream. However, she just sat there and took it like a champ. I was so proud of my little girl. They sent the swab to the lab to be tested and we went home to wait for the results. A few days passed and Faith sounded way better so we assumed that the results would come back normal. However, we received a call about a week later that the results had come back and Faith had two strands of bacteria. In order to treat these strands she would need to be put on antibiotics. One of the medicines she had to take required a nebulizer. We had to go pick up the nebulizer from a place called Vital Air in Calgary. The options was to rent it for $40 a month or buy it for $120. They recommended we buy the machine as we would be using it for another medications in the future.
  The next day we went and bought the machine and went to the hospital to get her medications and learn how to do the treatment. Upon arrival they told us the two strands of bacteria they found were Pseudomonas and Staphylococcus. If she had just had the Staphylococcus they would not have put her on any antibiotics, but due to the Pseudomonas they were going to treat both. So she took two antibiotics (Novo-Lexin for two weeks three times a day and Tobramycin for a month twice a day). The one was just a oral medication we put directly into her bottle. Tobramycin was a medicine that was put into the nebulizer and vaporized which she inhaled through an oxygen mask. The treatment took 20 minutes. We named the treatment TOBI and told Faith she was getting a mini facial. The first time we put an oxygen mask on her little face she screamed her head off and we had to restrain her. We tried to sing songs, hold her hands, etc but nothing worked. It was the longest twenty mins of our lives. Afterwards I remember leaving the room and balling my eyes out. You never want to see your child in pain. So we decided to wait until she was asleep to do the treatment as she was not aware of what was going on. For the most part it worked although we did have a few occasions where she woke up in the middle of treatment and screamed. Needless to say when the month was over I was happy. We took Faith back to the hospital and had her tested to see if the bacteria was gone. This time they did an oral swab and went down the back of her throat. She sat there like a champ and did not even cry. Our little girl is beyond tough and inspires me everyday with the stuff she goes through. A week later we got a call from the clinic to let us know all the bacteria was gone and the medicine had worked. We did a celebration dance with Faith. I am sure she had no idea what we were doing but she had a big smile on her face. There will always be a risks with Faith catching bacteria (hence why we are so anal about germs) but for now she is bacteria free.

Faith during her treatment

Strides in CF

FAQs About Combined Kalydeco™ & VX-809 Clinical Trial
Vertex Pharmaceuticals Inc. is studying its cystic fibrosis drug Kalydeco™ in combination with another potential therapy, VX-809, in people with the most common mutation of CF, Delta F508.

Both drugs are designed to treat the underlying cause of cystic fibrosis — a faulty gene and its protein product, CFTR — and are taken in pill form.

Results from a Phase 2 clinical trial of Kalydeco and VX-809 in multiple combinations showed significant improvements in lung function in people with two copies of the Delta F508 mutation.

The Delta F508 mutation creates a defective protein that does not move to its proper place at the cell surface. VX-809 is designed to move CFTR to the cell surface; Kalydeco is designed to improve the protein’s function once it has reached the cell surface.

Vertex plans to begin a pivotal trial of Kalydeco and VX-809 in people with two copies of the Delta F508 mutation in early 2013, pending discussion with regulatory agencies.

The U.S. Food and Drug Administration (FDA) approved Kalydeco in January 2012 when taken alone for people with the G551D mutation of CF ages 6 and older.

Kalydeco was formerly called VX-770 and is also known by its generic name ivacaftor.

Vertex developed Kalydeco and VX-809 with significant scientific, clinical and financial support from the Cystic Fibrosis Foundation, including a $75 million investment.

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What were the results of the Kalydeco™ and VX-809 Phase 2 clinical trial?

In June 2012, Vertex announced results from the second part of a Phase 2 clinical trial of Kalydeco and VX-809 in combination. The trial enrolled 109 people ages 18 and older with at least one copy of the Delta F508 mutation of CF.

People who received the combination treatment showed improvements in lung function, compared with those who received a placebo.

Those with two copies of the Delta F508 who received the highest dose of VX-809 had the greatest improvement. More than half of this group had an improvement in lung function of 5 percentage points, compared with those on placebo, and a quarter of this group had an improvement of 10 percentage points or more.

Participants with one copy of the Delta F508 mutation also showed improvements in lung function, however, the improvements were smaller than those seen in people with two copies of Delta F508.

The study also evaluated the safety and tolerability of the combination therapy. There were no serious adverse events reported during the trial.

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What is the difference between Kalydeco and VX-809?

Kalydeco and VX-809 are two individual drugs that have been studied in separate clinical trials and are currently being studied in combination in people with the Delta F508 mutation of CF.

Kalydeco was approved by the FDA in January 2012 for people with the G551D mutation of CF ages 6 and older.

In people with the G551D mutation, Kalydeco helps improve the function of the defective CFTR protein at the surface of the cell. Kalydeco allows CFTR that is at the cell surface to function better, allowing a proper flow of salt and fluids on the surface of the lungs. This helps to thin the thick, sticky mucus caused by CF that builds up in the lungs.

VX-809 is designed to move the defective CFTR protein to its proper place at the cell surface. The Delta F508 mutation leads to a CFTR protein that does not fold correctly. Because the defective CFTR is not the right shape, it does not make it to the surface of the cell.

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What are the next steps for the Kalydeco and VX-809 combination trial?
Vertex plans to begin a pivotal trial of the combination treatment in people with two copies of the Delta F508 mutation of CF in early 2013, pending discussion with regulatory agencies. Pivotal trials are usually Phase 3 trials, designed to collect data that the U.S. Food and Drug Administration can use to decide whether to approve a potential drug.

Vertex has also said it will conduct additional studies of Kalydeco and VX-809 in combination in people with one copy of the Delta F508 mutation.

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Will the Kalydeco and VX-809 combination therapy help people who have one copy of the Delta F508 mutation and a copy of another mutation?
In the Phase 2 trial of Kalydeco and VX-809 in combination, participants with one copy of the Delta F508 mutation showed improvements in lung function, compared with those on placebo. However, these improvements were smaller than those seen in people with two copies of Delta F508.

Vertex has said it will conduct additional studies of Kalydeco and VX-809 in combination in people with one copy of the Delta F508 mutation.

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How many people with CF have the Delta F508 mutation?

About 50 percent of people with CF in the United States have two copies of the Delta F508 gene mutation. About 40 percent of people with CF in the United States have at least one copy of the Delta F508 mutation.

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How can I find out which CF mutations I or my child have?
If you do not know what your or your child's two CF mutations are, contact your CF doctor or care center.

The Cystic Fibrosis Foundation’s Mutation Analysis Program (MAP) offers free and confidential genetic testing to patients with a confirmed diagnosis of cystic fibrosis. The MAP provides genotyping for cystic fibrosis patients who have not yet been tested, or who have been tested previously but still have one or more unknown mutations.

To learn more about the MAP, talk with your CF doctor or care center.

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How safe are CF clinical trials?

Nothing is more important than safety in developing new CF treatments. There are four layers of protection in every CF clinical trial. Each trial must be determined as safe and appropriate for patients by the:

• CF Foundation;
• FDA;
• Participating hospital or university’s Institutional Review Board (IRB); and
• Data Safety Monitoring Board (DSMB). The DSMB is an independent committee of experts in CF care that checks information on ongoing trials, watching for possible problems or unwanted side effects.

The CF Foundation is the only voluntary health organization to organize a DSMB whose members are experts in CF and completely independent and not involved in any way with the trial or its participants. In this way, the CF Foundation does its best to keep participants safe throughout the clinical trial.

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How is my safety protected broadly if I participate in a clinical trial?
The U.S. government has strict guidelines and safeguards to help protect people who choose to participate in clinical research. Every clinical trial in the United States must be approved and monitored by an institutional review board (IRB). This is to keep risks as low as possible and ensure that the risks are worth any potential benefits.

The IRB is usually made up of doctors and the general public. They look at the trial’s protocol (a clear and detailed plan of the experiment) to make sure that participants’ rights are protected and the trial does not cause them unnecessary risk.

In addition, an independent committee of experts in CF care, the Data Safety Monitoring Board (DSMB), examines data from clinical trials and determines if there are safety issues that need to be brought to the attention of the IRB or the sponsors of a clinical trial.

The FDA also must approve all clinical trial protocols and make sure all of their procedures are being followed as the trial goes on.

In the United States, anyone participating in a clinical trial must sign an Informed Consent Form. This form explains the trial in full, including the risks, and a research team member will explain the trial and the consent form to individuals before they sign it.

Hospitalized

Thus far, Faith has been hospitalized once. She was admitted to Alberta Children's Hospital on July 13, 2012 for Bronchiolitis. She had been stuffed up for a few days so I decided to call her nurses. They suggested I bring her in just to check her out and see if she needed any medication. Brandon was on the road for a baseball trip, but my grandmom and Aunt were in town so I left Kaylee with them and headed to the hospital. Once there they took a listen to her lungs and decided to admit her. At the moment I remember being so scared and not sure what this meant for Faith. They took me to the unit where Faith would be staying and got Faith hooked up to all the monitors. They put her in isolation due to her CF (everyone that entered the room had to wear scrubs and masks) She looked so small in that hospital bed and had fear in her eyes. I felt awful, but knew it was the best place for her to be. I left her there with the doctors to rush home and pack a bag and grab Kaylee. I had no idea how long she would be staying in the hospital for so I threw a bunch of stuff in a bag. I said goodbye to my grandmom and Aunt as they were leaving first thing in the morning. I called Brandon and shared the news with him and he was devastated. It was so hard for him to be on the road and he felt helpless. I promised him I would keep him up to date with any news. I jumped back in the car and headed to the hospital. At that point I couldn't hold back anymore and cried my eyes out. I was scared for Faith and just wanted her to be ok. We arrived back at the hospital and went up to the room. Faith was sleeping. They had given her some Tylenol as she was running a fever. They brought in a bassinet for Kaylee as well. I held Kaylee in my arms and sat next to the bed with Faith and held her hand. I was beyond tired and stressed, but didn't have any options. Luckily my dear friend Angie had heard what was going on and came to the hospital. I was shocked when I saw her, but more than anything so thankful she was there. She sat with the girls and let me sleep for awhile. After a bit we decided for her to take Kaylee home with her so I could focus all my attention on Faith. I was so relived to have help and to this day cannot thank her enough. So they packed up Kaylee's stuff and off they went. I sat with Faith through the night and didn't get much sleep. I just held her hand and sang to her. The next morning the doctors came in to do an assessment. She had broken her fever and they decided she could go home on a Ventolin machine. Ventolin is an inhaler that blows air into the lungs to help move things more easily. She was to take this every 4 hours for 24 hours. They also did a suction of her nose to test for any viruses. In order to do this they stick a tube in her nose that goes down the back of her throat. I did not watch this as I could not handle to look. She screamed her head off but was a real trooper.
   We packed up all of our stuff and waited for Angie to come back with the car and Kaylee before we left. Once she arrived we headed to the car and went back home. Faith did really well at home and seemed like she was feeling much better. The CF Clinic saw her the next week and listened to her lungs. They were very pleased at what they heard. Her results from the swab also came back normal. All was such a relief to hear and I was excited to not be in the hospital anymore. I was thankful we only had to stay one night. I know there will be other times she has to be admitted, but we are hoping to keep those few and far between.

Treatment for Cystic Fibrosis

People with Cystic Fibrosis take medications for their entire lives to control symptoms and prevent complications of the disease. Treatment programs are tailored to individual needs and depend upon the stage of the disease and which organs are affected. Treatments followed at home generally include:

• tapping or "clapping" the chest and the back vigorously(percussion) or PEP (positive expiratory pressure) Mask Therapy or other forms of chest physiotherapy to help loosen the mucus which clogs the lungs;
• taking pancreatic enzymes with all meals, to aid digestion;
• taking nutritional supplements and vitamins to promote good nutrition;
• taking antibiotics in pill, intravenous (IV), and or inhaled forms, to ease congestion and protect against and fight lung infection;

Faith does not have too take too much medication at this point. As she continues to get older more medication will be added. Most adults take anywhere from 20-40 pills a day. Currently, Faith takes 4 medications.

• Creon (allows her to break fats, protein, and carbohydrates. She has to take this every time she eats).
• Rantidine (helps with reflux. She takes 1.0ml of this twice a day)
• Aquadek (Vitamins A, D, E and K. She takes 1.0ml once a day. Many people with CF have problems when they eat food, making it hard for their intestines to soak up nutrients, especially fat. Vitamins A,D, E and K are unique because they need fat in order to be soaked up by the body, they are called fat soluble vitamins.
• Salt (16 ml per day. Salt is essential for patients with cystic fibrosis for muscle function, nerve cell health and to improve the flow of fluid in cells. Since patients are losing higher than normal levels of it when they sweat, replacing this loss is very vital)

Faith has also started her Physio Therapy (clapping the chest and back vigorously). There are a total of 6 positions. She currently does a minute in each position. Our goal is to work up to 5 minutes in each position twice a day. Chest physiotherapy is important because helps to prevent the thick, sticky lung secretions from blocking the air tubes. This helps to reduce infection and prevent lung damage

                                                   ( A video that demonstrates Physio. She talks for the first few mins of the video, but then proceeds to demonstrate).

What is Cystic Fibrosis

Most people are unaware of what Cystic Fibrosis is and what it's all about. I know Brandon and I had no clue when Faith was diagnosed. There is a lot of false information out there so do not believe everything you read. If you are interested in learning more I have a ton of trusted websites I can give you.

About Cystic Fibrosis

Cystic Fibrosis (CF) is the most common, fatal genetic disease. CF is a multi-organ disease affecting primarily the lungs and the digestive system. In the lungs, CF causes severe breathing problems. A build-up of thick mucus makes it difficult to clear bacteria and leads to cycles of infection and inflammation, which damage the delicate lung tissues. Patients must follow a demanding daily routine of physical therapy to keep the lungs free of congestion and infection.

In the digestive tract, CF makes it extremely difficult to digest and absorb adequate nutrients from food. Thick mucus blocks the ducts of the pancreas, preventing enzymes from reaching the intestines to digest food. Therefore, persons with CF must consume a large number of artificial enzymes (on average 20 pills a day) with every meal and snack, to help them absorb adequate nutrition from their food.

Cystic Fibrosis Facts

• Is the most common, fatal genetic disease
• Is a multi-organ disease that affects mainly the lungs and the digestive system
• Causes the body to produce abnormally thick, sticky mucus that:
  • blocks airways
  • can lead to fatal lung infections
  • blocks ducts of the pancreas
  • prevents enzymes from reaching the intestines to digest food
• Is not contagious
• Is caused by a mutation, or defect, in the Cftr gene
• Currently there is no cure for CF, but there is real hope

The symptoms and severity of CF vary from person to person. Some people with CF have serious lung and digestive problems. Other people have more mild disease that doesn't show up until they are adolescents or young adults.

Respiratory failure is the most common cause of death in people with CF. Until the 1980s, most deaths from CF occurred in children and teenagers. Today, with improved treatments, people with CF live, on average, to be more than 35 years old.

How it all began and the start of the Blog

June 27, 2012 is a day we will never forgot. This was the day it was confirmed Faith had Cystic Fibrosis. I still remember sitting in the Doctors office looking at Brandon confused and not understanding what this meant for our lives or Faith. Let me back up a bit and explain how we got to this day.
    Shortly after we brought Faith home from the Hospital we had our first Doctors Appointment with our family Doctor. We took her in for a normal check up and everything was great. It was towards the end of the appointment when we were told Faith had a newborn screening test done for Cystic Fibrosis and her results had come back high. It was not a guarantee she had Cystic Fibrosis, but more testing was needed. The next day we received a call from Lori one of the nurses from the Alberta Children's Hospital Cystic Fibrosis Clinic. She was calling to set up an appointment to bring Faith in and have a sweat test to confirm diagnosis. On the day of the appointment we went the hospital with no real thoughts one way or another. We went to the lab and had a sweat test done. The sweat test measures the concentration of chloride that is excreted in sweat. Normally, sweat on the skin surface contains very little sodium and chloride. People with Cystic Fibrosis have 2 to 5 times the normal amount of sodium and chloride in their sweat. During the sweat test, medicine that causes a person to sweat is applied to the skin (usually on the arm). The sweat is then collected on a paper or gauze pad and then taken to the lab to be measured. The test takes a total of about 20 mins. After the test we went over to the CF Clinic to meet with the Doctor and wait for the results. Dr. DiBartolo came into the room and introduced herself. She sat down with us and explained what Cystic Fibrosis was and what this would mean for Faith if the diagnosis was confirmed. Shortly after Lori the nurse came in with the results from the sweat test and it was confirmed that Faith did indeed have Cystic Fibrosis. We sat there in silence in the room just staring at one another with emotions running wild through our head. We were about to embark on a life long journey with our daughter with a disease we had never heard of before. We have started this blog and dedicate it to Faith. It is our goal to keep everyone up to date on Faith's journey as well as educate as many people as possible. We may not have all the answers but together we can work towards a cure!!