11 more days!

11 more days till Ben's first Cystic Fibrosis Fundraising event!  Come support the Cystic Fibrosis Foundation and the Ferguson family!  

NOVEMBER 8, 2008 @ Zylstra Harley-Davidson Dealership

131 S. Randall Rd, St. Charles, IL

*See invitation below!

Health Update

Last week Ben visited the dentist.  His teeth are healthy and he has no cavities.  This is good news because CF patients tend to have more problems with their teeth.  

Also, two weeks ago Ben got his fingers caught in the treadmill and he went to see the doctor again last week. Sadly, there is a change Ben will need skin grafts on his hand.  More decisions will be made this week regarding the possibility of this procedure.

We are praying the doctors will make the right decision.  We also pray that Ben's adventurous attitude will not get him in trouble any more than it has!

CRUISIN' FOR THE CURE 2008

The first Cystic Fibrosis Fundraising Event in honor of Benjamin Ferguson!

You're Invited!!

To a family event and motorcycle ride

Saturday, November 8, 2008

Zylstra Harley-Davidson Dealership

131 S. Randall Rd, St. Charles, IL

Ride registration: 1:00 pm

Bikes leave: 1:30 pm

Rally reception and Ben's story: 3:00 - 4:00 pm

Registration fee $25 (includes t-shirts)

Rider fee $10 (includes t-shirts)

General Admissions $5 - Come enjoy food and beverages!

Rev up your bikes and join us for the inaugural Cruisin’ For the Cure. This motorcycle ride and rally is to benefit the Cystic Fibrosis Foundation.  Enjoy riding through scenic St. Charles (weather permitting) or just join us at the dealership to meet Ben and hear his story.  There will be food, beverages and prizes…it will be a great day for a great cause!!  

For more information on donations and sponsorship, please contact

Karen Crumback @ 312.236.4491 ext 104 or kcrumback@cff.org

Or Email myself at megan.bollier@student.indwes.edu

Also:   TO REGISTER

Visit this link:  http://grillinois.cff.org/cruisin08

Getting Involved!

These are pictures of Michelle and my dad (aka the famous "Papa") two weeks ago when they attended the Cystic Fibrosis Foundation Fundraiser called The Breath of Life Gala in downtown Chicago.  It was a great experience for both Michelle and my dad to witness the passion they have to find a cure.  Four months ago Ben was diagnosis with cystic fibrosis, and already we are beginning to get involved with the foundation to raise money for the cure!  

*More information to come soon about an upcoming event to raise money for CF, in honor of little Ben!

A Little Accident

Today Ben had a little accident involving  his fingers and a treadmill which resulted in a three sliced fingers and a trip the emergency room.  Ben was playing in the basement while my mom was running and before she knew it, mischievous little Ben had his fingers stuck in the belt part of the treadmill.  My mom immediately stopped the machine, pulled his fingers out, and began assessing his condition.  After a half an hour we decided to take him to the emergency room because he seemed to be in a lot of pain.  At first when we told him he was going to the hospital, he said "No more poke, poke."  We kind of chuckled and said he didn't have to worry about that!  At the hospital we were in and out with antibiotic medication, pain killers, and advice for a follow up visit to check his condition.  He was a pro at the hospital though and did very well!  Guess it's just another thing to add to the list!  

We just have to keep praying.  I'm sure there are many more surprised to come and we have to trust God with every minute!

Finally!

Ben is back to his baseline and he rarely coughs anymore.  It took him 3 weeks but he is back! Thank you so much for your prayers!

Exodus 14:14  -  The Lord will fight for you; you need only to be still.

Dedicated Fans

Ben wakes up by 6am each morning and is quickly followed by Caleb. Either Paul or Michelle take them two downstairs for "vest and mask" time (Chest Therapy and Pulmozyme Nebulizer treatment). Ben wants to watch "Oh no You never let go," which is a DVD of Christian songs from Grandma Ferguson (Lannie). Ben has been watching this video 3 times a day for the past 2 weeks. Slightly obsessive?  I think so!  But it's a good obsession and the whole family enjoys it! Ben's favorite part of the song is, "Through the calm and through the storm. Oh no, you never let go. Lord, you never let go of me."  (When I go home this weekend, I'll get a video of it.)  What an amazing lesson for Ben to learn at a young age. We are so thankful that Ben is filling his soul with God's truth.  Please continue to pray for health for Ben's body as well as salvation for his soul. 

Ben seems to be doing well. Michelle and Paul are still continuing to do his vest treatments 3 times a day (which is increased from twice a day) and are closely watching him as he still has an increase of mucus. Michelle said she thinks it was less yesterday but they are still going to see how it is today and then talk with the Nurse Practitioner on Monday. If his mucus has not decreased, then they will take him to see Dr. Chung on Tuesday to make sure nothing more is going on. Ben doesn't seem to have anyother symptoms of lung infection, so we think it is just taking him a while to get over this cold.  Michelle also said she never expected him to struggle through a cold so much now that we have ways to help him.  But through it all we are reminded how important it is to protect Ben from exposure to illnesses and most importantly to bathe him in prayer. We are SO grateful for your prayers.  James 5:16 says, "The prayer of a righteous man is powerful and effective."

Last weekend my dad and Michelle went to a Cystic Fibrosis Foundation Fundraiser called the Breath of Life Gala. They gave me a full report, stating it was a very nice evening at the Ritz Carlton in Chicago. They met some wonderful people from the CFF as well as the Foundation's President Robert Beall.  Dr. Beall spoke about the great strides in the care and life of CF patients. He shared the exciting advances that have been made and are in the process of being made.  These include protein repair drugs that would address the root problem of CF.  It was exciting for my dad and Michelle to hear about all the work the CFF is doing for the impovement of CF patient's lives and the extremely confidence that a cure is in grasp. 

WOW!  How cool to think about the possibilities God has in store for Ben!  He could be one of the first to experience these life saving strides for a cure of cystic fibrosis!

"Not our will, but Yours be done."  

Improvements...

Ben is getting better ... but still has a cough and extra mucous.  His appetite has increased, he has been sleeping better at night, and his energy level has increased.  Michelle said he still gets short of breath when he runs around while playing, but it isn't has bad as it was the last couple of weeks.  Yay!  Such a relief to know he is getting better!      

Progression

Ben seems to be taking a turn for the better.  He went to bed really early last night and felt rested when he woke.  He still has excess mucus and is coughing throughout the day.  His energy level is not back to normal and he is breathing harder than normal after activity.  The Pulmonary Nurse Practitioner Michelle and Paul consulted with thinks Ben probably has a viral infection and with CF it takes longer for the body to heal.  The antibiotics should protect Ben from bacteria infection.  Please pray for quality and quantity of sleep for Ben, healing of this infection and protection for other illness.  We deeply value your prayers.

Persistent Cough

Along with Ben's cold, he has a relentless cough and is having some digestive problems.  He is showing many of the same signs from his episode this summer.  Michelle and Paul are very concerned about his condition.  It's a learning process as they deal with Ben's health because we are so new to his disease that it's hard to know exactly when to take appropriate measures.  If things do not start to get better tomorrow, Ben will be visiting the CF clinic again!  We will keep you posted with his health!  Please pray for our little guy!    

Extra precaution!

Ben's cold has not improved and there is a risk unwanted bacteria will grow with the extra mucous in his lungs.  To prevent this from occurring, Ben was given antibiotics today for the next two weeks.  

Michelle and Paul are continuing to seek guidance for the best way to care for Ben and his newly diagnosed disease.  There are so many gray areas they have to consider about Ben's health.  We pray for wisdom as Michelle and Paul care for their two year old little boy who loves to be active and to know when to protect him.  There is a balance between living a normal toddler life and being smart about his condition.   

Despite our fears and concerns about Ben's life ... we must be reminded the real reason we have every breath to be thankful for.  We have one goal.  We have one purpose.  To live with Jesus Christ eternally!  It is easy to get caught up in every little detail of life, being concerned about every cough, cold, or chance that Ben will grow bacteria in his lungs ... but ultimately we must focus on the big picture!  

While writing this blog, I was listening to this song...

"I Will Rise" - Chris Tomlin

There's a peace I've come to know 

Though my heart and flesh may fail 

There's an anchor for my soul 

I can say "It is well" 

Jesus has overcome 

And the grave is overwhelmed 

The victory is won 

He is risen from the dead 

[Chorus:] 

And I will rise when He calls my name 

No more sorrow, no more pain 

I will rise on eagles' wings 

Before my God fall on my knees 

And rise 

I will rise 

There's a day that's drawing near 

When this darkness breaks to light 

And the shadows disappear 

And my faith shall be my eyes 

And I hear the voice of many angels sing, 

"Worthy is the Lamb" 

And I hear the cry of every longing heart, 

"Worthy is the Lamb" 

Every Cold Is A Fight

Caleb got a cold last week.  When Michelle and Paul went to Ben's CF visit they talked with Dr. Chung about ways to help Ben through a cold. She does some homeopathic treatments (using natural substances) for those that want to try alternative medicine, which is one of the huge reason Michelle and Paul wanted her as their doctor.  She also told them to give Ben oscillococcinum 3 times a day when he shows signs of a cold or the flu.  This medication is homeopathic and relieves influenza-like symptoms.  Last week they gave it to Ben as he was showing signs of a cold.  They were hoping it would lessen his symptoms and strengthen his body to fight the cold.  So far Ben is mildly congested with some clear drainage and seems to be improving over the weekend.  Michelle and Paul are increasing his vest treatments to 3 or 4 times a today.  

Please pray for Ben's immune system to fight this virus off quickly and protection from all the bacteria who would love to live in the excess mucus of Ben's lungs. We are doing what we can to help Ben, but we trust in our great God and know that He alone is the great Healer.

Exodus 14:14  -  The Lord will fight for you; you need only to be still.

Family Love

Romans 12: 9-13

Love must be sincere.  Hate what is evil; cling to what is good.  Be devoted to one another in brotherly love.  Honor one another above yourselves.  Never be lacking in zeal, but keep your spiritual fervor, serving the Lord.  Be joyful in hope, patient in affliction, faithful in prayer.

*Pictures taken by Katie Walser

2nd CF Clinic Visit

Ben visited the CF clinic Friday, September 12th for a 3 hour appointment.  The doctors were very thorough while assessing Ben, shared new laboratory results, and spent a big portion of the time informing Michelle and Paul about additional ways to care for Ben.  It began with the nurse as she measured how much Ben had grown.  He had gained another 2 pounds and grew taller as well. He is now is the 29.7% for weight and height.  They still consider Ben's nutritional status to be at-risk until he is over 50%, but they won't look at that seriously until he has been on enzymes for another 6 months. Michelle and Paul are diligently giving Ben healthy fats, protein, and lots of calories. Then they met with the nurse practitioner, Peggy Garvey, and she asked many questions about how Ben is doing and the treatments.  She also did a throat swab for a bacteria culture test. We will know the results of that in 3-4 days.  Doctor Chung was next as she listened to Ben's lungs and said he sounded great. She also gave us back the genetic test results. The tests indicate the homozygous presence of a known mutation of deltaF508 and its pair deltaF508.  It is the most common mutation in North America with about 50% of CF patients who have this homozygous mutation. It is typically characterized by pancreatic insufficiency and having lung infections.  The main concern with these results is acquiring pseudomonas organisms in their throat cultures.  The big deal with this genetic mutation is that it is harder to kill this bacteria.  Doctor Chung stressed to us the importance of his daily treatments, exercise, and good nutrition more so than anything else... And we know most importantly PRAYER!  

Next we saw the respiratory therapist.  Michelle had some questions concerning the cleaning and sterilizing of Ben's neubulizer and inhaler. There is so much to learn as Michelle and Paul pursue the most efficient ways to care for Ben.  Lastly they met with the dietitian which was the easiest part of the visit because Michelle and Paul have been persistent with Ben's diet.  There is definitely no problem in this particular area for Ben.  He is getting organic food, rich in every nutrient he will need to thrive!

THANK YOU THANK YOU THANK YOU for those reading this and who are PRAYING for Ben.  We are extremely grateful for those lifting Ben and our family up to the throne of our Lord God!  Please don't stop praying!  We don't know what the journey ahead of us holds... but we know whose hands hold them!

Jesus Heals Many

Matthew 8:14-17  -  When Jesus came into Peter's house, he saw Peter's mother-in-law lying in bed with a fever.  He touched her hand and the fever left her, and she got up and began to wait on him.  This was to fulfill what was spoken through the prophet Isaiah: "He took up our infirmities and carried our diseases."

Jesus Calms the Storm

Matthew 8:23-27  -  Then he got into the boat and his disciples followed him.  Without warning, a furious storm came up on the lake, so that the waves swept over the boat.  But Jesus was sleeping.  The disciples went and woke him, saying, "Lord, save us!  We're going to drown!"  He replied, "You of little faith, why are you so afraid?"  Then he got up and rebuked the winds and the waves, and it was completely calm.

Ben's life has taught me to be thankful for every breath.  Ben's life has taught us to look up.  We are not called to be comfortable in this world... we are called to trust that Jesus heals the sick and trust that Jesus will calm our storm.   

New Shoes!

Ben is doing great! Both Ty and Ben got new gym shoes, and like his father they are obsessed with their new purchase! We 100% thank the Lord for Ben's improvement and pray that his life will continue to bring glory to Jesus' name!

Matthew 6:33 - Seek first His Kingdom and His Righteousness and all these things will be given to you.

Heavy Load!

This picture shows Ben eating a donut for his high calorie, high fat diet! I was home for the weekend and was very surprised when I picked up Ben because I could easily tell he has gained weight. This is a huge blessing and answer to prayer!

Psalm 26:3-4 -

You will keep in perfect peace him whose mind is steadfast, because he trusts in you. Trust in the Lord forever, for the Lord, is the Rock eternal.

Team Treatments

Besides having the vest treatment twice a day, Ben receives a medicine called pulmozyme via a neublizer once a day. It is an awesome drug that thins the mucus in Ben's lungs, thus helping to eliminate conditions in Ben's lungs that the bad bacteria like. Here are some pictures of Ben with his fish mask on. Ben's normal routine is to do the albuterol inhaler then vest then pulmozyme in the morning and then the albuterol inhaler and vest right before bed. The vest has a preset timer for 15 minutes. You can adjust the frequency and the amount of pressure depending on his age. The pulmozyme neublizer treatment takes about 15 minutes.
Michelle took Ben to see his Primary Care Physician last week and Ben gained a pound and grew a 1/4 inch in two weeks. Praise the Lord! The enzymes are working and we are on our way to getting Ben to a good weight and height. The doctors want him to be in the 50% for both. Paul and Michelle are trying to feed Ben as high fat, calorie and protein diet as possible. He eats a lot of nuts, wholesome fatty beef, heavy multigrain breads, eggs with spinach and coconut oil, veggies with butter. . . actually everything he eats gets added butter or olive oil! Please pray Ben will be able to gain and maintain the weight he needs. Praise God for his continued health!

Thank you for praying for Ben!

Ben receiving pulmozyme through the neublizer.

Ty is there with Ben for almost every treatment.

The family has developed a team mentality with Ben's Cystic Fibrosis.

They all do it together and encourage Ben along the way.

Prayer Request

Some days Ben will cooperate during his treatment and others Michelle and Paul have to fight Ben to do his routine. The whole family has to be flexible during Ben's treatment. Ty has done an especially good job of being patient and considerate during Ben's treatments.

Pray for the whole Ferguson family.

Psalm 105:4 - Look to the Lord and his strength, seek His face always.

Ben occupying himself during his treatment.

Dr. Appointment

Ben went to a doctor appointment last week to receive his immunization shots and had an allergic reaction on his leg. Michelle took him back to the doctor and they said the reaction was not something to stress about. Other than the reaction, the doctors were very encouraged about Ben's health. He has continued to gain weight which is a huge blessing! God continues to work through Ben's life! Paul and Michelle are so thankful for everyone who is praying for Ben's health. Through the power of prayer, Ben's health continues to progress!

Travel Home

Paul, Michelle, Ty, Ben, and Caleb are traveling late tonight on a flight back to Chicago from their 6 day stay in New Hampshire. They had a wonderful trip while spending quality time with the Ferguson family. Paul and Michelle planned to go to New Hampshire during the 2 week period Ben was in the hospital, so they made arrangements to take their trip later in the summer. Please pray that the family will travel safe and the kids will not lose it at any point of the trip (which is hard to do!).

New Hampshire

Paul, Michelle, Ty, Ben and Caleb had a great time visiting Poppy and Lannie in New Hampshire. Michelle said that Ben had a lot of fun helping Poppy drive his boat, watching Lanny's puppet shows, playing with cousins Cole, Olive and Claire, and being amazed by Uncle Will's baseball moon-shots. They played a lot of baseball, went frog hunting (but returned unsuccessful because Ben and Lanny got stung by bees), looked at the boats coming into Wolfboro's harbor, and visited the famous ice cream stop Bailey's Bubble. Meghan, Cole and Olive drove from Boston to see them, which was a highlight for Ty and Ben. They went to a nature center/wildlife zoo that had deers, bobcat, mountain lions, bears, bald eagles, foxes, and hawks to look at and learn about. Will, Kim and baby Siena made the 6 hour trip from New York City to see them for the weekend. They really enjoyed meeting Siena for the first time and playing with Will and Kim. Aunt Kris, Uncle Steven, Claire and baby Haven arrived from Boston on Friday as well. Ty, Ben, and Claire ran around the house chasing each other, played with "blue guy", and had fun making smores together. It was a blessing to spend time with family and they had a relaxing and enjoyable time.

Lannie putting on a puppet show for the boys

Ben loves to be with Poppy!

Celebrating Tymon's 4th birthday with Aunt Meghan, Cole, and Olive.

Ty and Ben enjoyed playing baseball with Uncle Will.

Making smores with Uncle Steven, Aunt Kris, Lannie and Claire.

Another Vacation

The whole Ferguson family piled in the car this morning at 5 am to fly to New Hampshire to visit Paul's extended family. Even for a six day trip, they have so much stuff to pack with all of Ben's treatment equipment. We pray they will be safe, the kids will cooperate while they travel, and that Ben will not get any illness from the congested air on the plane.

My Personal Twist

Today I feel burdened about Ben's disease and what the future holds for his precious life. I have been following another blog called "Confessions Of A CF Husband" since last school year when my teacher shared their story. The author's wife has CF, unexpectedly got pregnant, had a double lung transplant around the same time of the birth of her daughter, and recently has been diagnosed with Post-Transplant Lymphoma (a serious type of cancer). This Christian couple has shown great faith through their journey and hardships...and it has been a true encouragement in my life since Ben has been diagnosed.

Lamentations 3: 22-25 - Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait for Him." The Lord is good to those whose hope is in him, to the one who seeks him.

As I plan to leave for school at the end of the week, I have made arrangements with Michelle to send me pictures and updates regularly so you will continue to be updated with Ben's health, prayer requests, and most importantly how God is working through his disease. As I prepare to be 300 miles away from my little guy, I have reflected a lot on what has happened this summer, which is why today's blog is more personal rather than strictly focusing on Ben's health. I listened again to Ben singing "Step by Step" and cried when I heard his sweet voice sing the words, "Oh God, you are my God. And I will ever praise you. I will seek you in the morning. And will learn to walk in your ways. And step by step You'll lead me. And I will FOLLOW YOU ALL OF MY DAYS."

From the bottom of my heart I hope and PRAY that one day these will not just be words to Ben, but they will become his life. This summer, Ben's life has completely changed me. I have been searching and I have been stretched through witnessing Ben's diagnosis and struggles. At the end of the summer ... I come to realize I'm at the same place at where I started. I'm still the same broken, lost soul who is longing for someone, something, anything to save me. And through the times when I felt like I was in an empty room streaming and no one could hear me ... there was someone who closed my mouth, held me in His arms, and brought peace, hope, and joy back into my life. It was God, My Savior, Jesus Christ who comforted me and our whole family and who saved us from despair. If you do not believe in Him today ... don't miss the signs. Let Ben's life be the sign that life is too precious and too easy to miss the true meaning and the true reason we take every breath. Jesus Christ is the reason and we are in desperate need of his faithfulness!

Doctors Appointment

Ben's doctor appointment was over 2 hours because the whole CF team checked on Ben and answered any questions Michelle and Paul had. Overall, the doctors said Ben has continued to gain weight so they increased the amount of enzymes he takes before his meals and snacks. Also, Ben got an inhaler for his albuterol medication instead of a nebulizer treatment. This is a huge relief for Michelle and Paul because it takes 10 minutes out of his treatment time and makes life much easier since Ben fought it each time. Ben now only has one nebulizer, pulmonzyme. According to the charts, Ben is within 8% in weight for his age group. He is considered at risk for weight and if he continues to remain at these levels he will require a feeding tube. The doctors are not too concerned since Ben was just diagnosed. They want him to be within 50% for his weight within the next 6-12 months. It is so important that Ben increases his weight because his lungs will function at a higher level.

Ben telling Papa he wants to ride the motorcycle.

What Ben Still Has Ahead

There are many important appointments approaching Michelle and Paul which will give them more and more answers about Ben's health and condition. Friday morning Ben has a follow-up doctors appointment at the CF clinic in Westchester. We are looking forward to this appointment to see what the doctors have to say about Ben's health after being released out of the hospital for 2 weeks. Also, we are waiting on the results for his genetic test which will come in the next couple of weeks. This test will analyze the severity of his disease and will be able to tell what specific genes are effected. The genetic carrier test detects if the patient carriers one or more mutation of the CF gene and how many copies of each mutation.


Today Ben was running around, chasing Ty and cousin Luke as Michelle noticed that Ben has a hard time keeping up with them. This is mostly because Ben is a year behind them, but also Ben seems to get tired more easily. Ty and Luke were racing down a hill toward the beach as Ben quickly followed, hating to be left behind. Ben could only make it down the hill and then stopped. Michelle had to walk down to bring him back up.


The thing that worries Michelle and Paul the most about Ben's disease is the unknowns about what the future holds. Ben could very well thrive and live a healthier life than any one without CF. On the other hand, Ben may be the young teenager who is always behind in sports and has difficulty keeping up with his peers. Michelle and Paul have learned quickly that they have no other choice than to take one day at a time, trusting fully in God's plan for Ben's life. We pray that Ben will be free of any dangerous bacteria, that he will take full ownership of his disease, and that he will trust God with his future.


Philippians 3:7-8 - But whatever was to my profit I now consider loss for the sake of Christ. What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things.


1 Thessalonians 5:16 - Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.

Ben and I dancing to the new Carrie Underwood CD as he does his treatment.

The Battle

Ben's treatment involves the whole family. To keep Ben entertained and occupied during this routine, everyone helps by reading books, singing songs, playing with blocks or motorcylces, or anything else that seems to get his mind off it.

Other than the struggles for Ben's therapy, he is a wild man around the house. Every member of our family has commented on how funny Ben is. He always bring a smile to everyone's face!

Ben not happy to do his treatment.

Ben hanging out with Uncle Matt on our family vacation.

Lake James

The three boys hanging out in the morning.

The whole family swimming in the water.

Ben, Ty, and Paul staying close together in the water.

Terrible Two's

Ben, cousin Hailey, and I making breakfast for everyone after our family church.

Ben is enjoying the week on the lake! He went on the tube today with Michelle, Hailey, and I and Luke and Ty on the one next to us. He loves to go fishing off our dock, but he doesn't like to take turns with his brother and cousins! He is definitely one of the loudest kids at the house, waking up anyone who is sleeping.

Today I walked into the house and heard Aunt Krista nicely asking Ben not to take the trains from cousin Jackson. I turned to Ben and simply asked, "Ben are you sharing with baby Jack?" He said to me, "Ummmmmmm........." (as if he knows he isn't, but doesn't actually want to admit his behavior). Krista laughed at his response as most people do when Ben is in trouble. So I had to give him the whole sharing talk and be nice to everyone. Then I asked Ben to give Jack a hug and say he is sorry ... with his head down and lips smirked it took a long time for him to actually say it. I told him he can't be prideful and have a boy ego at the age 2 and not be able to say he is sorry for his actions. He didn't understand...but at least he started to share the trains with Jackson after that!

Ben brings energy and a unique dimension to our family. We are very thankful for his life!

James 1:2-6 - Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. but when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind.

Eye Witness

For the next week our family gets the chance to witness Ben's treatment first hand. We learned quickly it's not comfortable for Ben and is a painful site to watch. From the vest, Ben's whole body shakes and when he tries to talk he sounds like he is on a roller coaster ride. Reality is sinking in ... Ben has to make big sacrifices to maintain his health. When Ben's cousins are already playing with trains and running around doing normal childish things, he has to sit for 20-30 minutes for his treatment twice a day. When he is older the situation remains the same. He will have to wake up extra early before sports games, school, and when he has sleepovers with friends, he will have to take time out for his treatment.

Ben's cold is getting better! There is no doubt he is healing fast because of the POWER OF PRAYER! He has never fought a cold this fast, even before his diagnosis. In the past, Ben's colds would last for weeks. We are thankful and encouraged through God's goodness! On the other hand, Uncle Time, Aunt Krista, and cousin Jack are all sick. Living together for one week in a spacious lake house is a special time for our family but nerve recking that germs will be spread. We have become Nazis about washing our hands, the number one prevention.


We believe in a POWERFUL, AMAZING, LOVING God ... he will take care of Ben! Psalm 34:8 - Taste and see that the Lord is good; blessed is the man who takes refuge in him.

Ben playing with Ty and cousins Hailey and Luke.

Ben's treatment (without the nebulizer) at the lake house.

Ben Is Official

For the next week Ben will be enjoying the Bollier family vacation on Lake James in Indiana. With 9 adults and 6 kids under 4 years old Ben will have plenty of activity! Even though we are excited about our time together, it's always a concern for Ben's health when he is around a big group of people for a long period of time.

Ben's cold doesn't seem that bad. His nose is running a little but is not that stuffed up and is not coughing. Please continue to pray that his immune system fights this off and he doesn't catch any other sickness.

Ben received a special gift in the mail from Uncle Will, Aunt Kim, and Cousin Siena. Of course Ben is obsessed and really wanted to do his pulmozyme nebulizer treatment on the motorcycle.

Ben is good at sharing his new toy with brother Ty.

Sick again?

Ben has a cold. Yes...really! Obviously his immune system has been down, so he caught something within the first week of being out of the hospital. He has continually been on antibiotics which really has an effect on his body's response to common colds anyone could fight off. For Ben's whole life he has been sick. The first 2 weeks of his life we realized he was not absorbing breast milk and we thought he was "allergic" to it. For the remaining of his lifetime he seemed to always have some sort of cold, runny nose, and congestion. It's interesting that now we freak out about a cold, even though during his whole life it didn't seem as big of a deal. But now we know Ben has cystic fibrosis, it will always be a concern when he gets sick.

Psalm 33:18-22 - But the eyes of the Lord are on those who fear Him, on those whose hope is in His unfailing love, to deliver them from death and keep them alive in famine. We wait in hope for the Lord; he is our help and our shield. In Him our hearts rejoice, for we trust in his holy name. May your unfailing love rest upon us, O Lord, even as we put our hope in you.

Trouble!

After everything that has happened, it's easy to see that Ben is still Ben ... always taking things from his brothers, always on the go, always knowing what he wants and when he wants it, and always up to something he's not suppose to do ... and cystic fibrosis has not stopped him from getting back to the normal 2 year old behaviors. Even though Ben seems to always be getting into same kind of trouble, he has such a sweet heart behind all his energy and excitement. Great-grandpa Bollier was at our house for a couple of weeks and it was so cute to see Ben walk over to his chair and give him a big hug when no one else was around him!

Ben may seem to be back to his normal lifestyle (besides his treatments and pancreatic enzymes), but it's Michelle and Paul who carry the heavy load of caring for Ben's disease at this point in his life. Michelle and Paul are learning the balance between take precautions to avoid Ben from catching any sickness and also allowing him to live out his life to the fullest. For Ben's remaining lifetime, there is a continuous prayer request that he does not get the serious bacteria, Pseudomonas aeruginosa. About 60% of people with cystic fibrosis get respiratory infections because of this bacterial. Pseudomonas settles in the thick mucous trapped in his lungs which is very hard to get rid of. Respiratory failure from these infections is what ultimately kills CF patients.

BUT ... We believe in a POWERFUL God! We pray that Ben will be free of this bacterial!

Since he has been home from the hospital, he has been riding his bike all over town! Before he was diagnosed, he didn't seem too interested in his bike, but now he just wants to take off!

Proverbs 21:30 - There is no wisdom, no insight, no plan that can succeed against the Lord.

Isaiah 25:1 and 9 - O Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago. Surely this is our God; we trusted in him, and he saved us. This is the Lord, we trusted in him; let us rejoice and be glad in his salvation.

Treatment

Ben is trying to get into the routine for his treatment every morning and night which takes around 45 minutes. Michelle said it is amusing to watch Ben during this process because he is strapped down to his nebulizer and his chest vibrating vigorously with the vest. Michelle and Paul are thankful for the vest because Ben is holding still for it better than their manual CPT.

Romans 8: 31-32 - If God is for us, who can be against us? He who did not spare his won Son, but gave him up for us all - how will he not also, along with him, graciously give us all things?

Benny's Improvement

Before Ben was diagnosed with CF and began treatment, he never slept through the night and always woke up around 5am. For the past 2 years Michelle and Paul have been experiencing Ben's inconvenient sleeping schedule. Just last night Ben slept until 7:30 am. We may have experienced the emotional disappointment to hear Ben has CF, but Ben's health has never been doing better from his treatment. It is so interesting to me that he never slept deep enough or long enough because his lungs were filled with fluid and he could not get enough oxygen. Also, Ben coughs a little when he wakes up, but it is not as bad as it was. Krista, Ben's Aunt, noticed he is not breathing as deep or heavy as he has his whole life. We are very encouraged and excited to continue to see how God heals his little body! There is only one person we can thank for his improvement, Jesus Christ! Thank you Lord!

Home!

Uncle Tim and Aunt Krista made a special welcoming sign for Ben when he arrived. Since Ben has been home his new vest arrived. Ben tried it this morning and it is a good option for CPT (chest physical therapy) because Ben can still use his arms. With the "pat pats" Ben has to sit still longer (which for a 2 year old is not possible!) but with the vest he can play with toys at the same time. Ben's little body is still adjusting to CF treatment such as the pancreatic enzymes. He has a very sore rash on his bottom which is either from the enzymes or the antibiotics. Ben is on oral antibiotics to continue his treatment from the hospital. Ben loves being home, but his body has gone through so much these past weeks that he is still worn out and is not 100%.

Ben likes to sing this song:

You are my strength when I am weak

You are the treasure that I seek

You are my all in all

Seeking You as a precious jewel

Lord, to give up I'd be a fool

You are my all in all

Taking my sin, my cross, my shame

Rising up again I bless Your name

You are my all in all

When I fall down You pick me up

When I am dry You fill my cup

You are my all in all

Jesus, Lamb of God

Worthy is Your name

Jesus, Lamb of God

Worthy is Your name

You are my strength when I am weak

You are the treasure that I seek

You are my all in all

Seeking You as a precious jewel

Lord, to give up I'd be a fool

You are my all in all

Stubborn little Ben would not take this picture ... but a little bribing for a piece of gum worked!

My dad and I made a surprise visit to see Ben. I have never seen a little kid so passionate about motorcycles! When we drove past the house Ben was standing outside and started to wave both arms frantically. He couldn't stand it! Haha...then Papa drove right past him and I will never forget how cute Ben was. He just stood their raising one hand in the air in complete amazement.

Please fully enjoy this picture like I do! A rough motorcyclist and his lobster bar t-shirt!