Cold Winter Days

Silly boys

Playtime with some favorites: trains, dinosaurs and trucks.

Ben and Caleb have become really good friends.
They are a dynamic duo and love to wreck havoc wherever they go.

Ben always seem to have things happen to him. The latest is slipping on the ice and getting a nice goose egg on his forehead. He is a tough little kid.

A Good Clinic Visit

Ben had his routine CF clinic at Children's Memorials office in Westchester, IL.

He is doing really well and hasn't had an exacerbation since July 29th!

Thank you for your prayers! Please continue to pray for Ben.

He has been doing a lot of growing this winter. In the past 2.5 months, Ben grew 1 inch.

Ben needs to keep working on getting high calorie, high fat meals to keep up with his growing.

His weight was fine but is not increasing at the same rate as his height, so his BMI went down. It is a little above 50% so they want to keep a close eye on his weight.

Please pray that Ben will start taking more ownership of his eating and would have a good appetite. It is a burden on Michelle and Paul to make sure he is getting enough to eat.

Lego Land

Michelle took Ben, Ty, Hailey and Luke (their cousins) to Legoland.

Ty and Ben enjoying the ride.

Ben and Hailey on the dragon ride.

Ben building a car to race down the ramp.

Christmas in Indiana

Uncles, Aunts and Cousins at Bollier Christmas

Jonathon Bollier organizing the troops.

Ben is chilling with Cash, Aunt Toni & Uncle Rob's dog.

Grandma and Grandpa Rowe

The whole family went to Indiana over Christmas. It was a blessed time with family! There was a flu bug going around in Indiana that the Ferguson's got. The Lord was gracious -- Ben got it but it didn't exacerbate his CF. We are so grateful!

Enjoying the Dirt

Ben playing hard

Ty, Ben and Caleb enjoying the mild weather.

Thank you for your prayers!

Thank you for your prayers!

Ben came down with a fever last week which only lasted 24 hrs. Praise the Lord!

Then a couple days later he caught Caleb's cold.

He was heading down the route of needing antibiotics. . .

Paul and Michelle increased airway clearance and

prayed for him to get over this on his own.

And for the first time since Ben has been diagnosed, he got over the cough/cold without it causing an exacerbation. This is huge for the Ferguson!

Our faith and trust in our Heavenly Father is growing and growing.

Thanks you again for your prayers!

"The prayer of a righteous man is powerful and effective." James 5:16

Logged over 300 hours on the Vest!

Halloween with friends (Ben is the Spiderman).

Ben just crossed the 300 hour mark on his Vest. He has spent a lot of time being shaken up by the Vest :) We are thankful for tools to help Ben live a healthy life.

Praise God for a Healthy Fall

The three amigos! They are the best of friends!

Ben loves to paint!

It has been such a blessing to have Ben healthy the past 3 months!

They had so much fun seeing Colleen

and visiting the Shedd Aquarium together!

Downtown Chicago

Since Ben cultured Psuedomonas at the end of July, he has been very healthy. He was on TOBI for the month of August and October which seemed to clean him out. He has been doing so well. We thank the LORD!

Please join us in prayer for God's supernatural protection over Ben through this winter season. We are really praying for an extended time of health for Ben.

Ben had his CF Clinic visit yesterday and it went well. Ben looks good and is growing great.

Successful Ride!

The Route

Halfway

T H A N K Y O U
to all who have already contributed
to the Cystic Fibrosis Foundation (CFF) for Ben!!
Your support is greatly appreciated!!
Ben, Michelle and Paul and our entire family are so thankful!!

Now that the ride is complete, if you wish, you can
* ** D O N A T E ***
online using the following link:

http://grillinois.cff.org/cruisinforthecure09

If you have been waiting
for the number of miles traveled
before making your contribution .... here are the stats ...
Ben's Grandpa completed
1,093 miles in 22 hours
Saturday September 26, 2009

Again, thank you!

2009 Cruisin' For The Cure

Raising Support for Cystic Fibrosis

in honor of Ben Ferguson

(Ben's Grandpa)

By supporting CFF, you are contributing to the research, care and education of Cystic Fibrosis, which will benefit Ben. I am impressed that approximately 90% of every dollar raised by

CFF is spend on research.

The 2009 Cruisin For The Cure

will be a group of motorcycle riders taking the challenge

to ride around Lake Michigan -- 1000 miles in 24 hours for the benefit of CFF.

You can support by donating an amount per mile ie . . .
penny per mile - $10

dime per mile - $100

dollar per mile - $1000

or any donation you wish … $ _____

Please visit
http://grillinois.cff.org/cruisinforthecure09

to make a donation online

or … send your check made out to CFF …

to Michelle Ferguson 0N556 Herrick Drive Wheaton IL 60187

Thank you so much!!

Allergies

Michelle talked with Ben's Doctor early this week and the Doctor thinks Ben's symptoms are from allergies and not an infection at this point. He is still congested with sneezing and some coughing. They started him on Kid's Claritin and that seems to be helping. Ben will start TOBI this coming Wednesday, so if there is anything deep in his lungs, the TOBI should take care of it. Please pray for strength and patience for Ben and Paul & Michelle as they start TOBI. It is difficult to add the twice a day treatment on top of his other therapy and nebs.

Continued Prayer. . .

Thank you for your prayers. Ben is such a sweet boy! He is always full of questions, very mischievous, loves to be with Ty and Ben, and is so into dinosaurs. We thank the Lord for making Ben "fearfully and wonderfully made". "My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, Your eyes saw my unformed body. All the days ordained for me were written in Your book before one of them came to be." Psalm 139:15-16

We thank the Lord for being a big and powerful God who loves Ben more than we can fathom.

Ben has had an increase of cough the past couple days which is an indication that he may have another lung infection. He is not due to go back on TOBI for another 2 weeks, so we are really hoping that Ben doesn't have to go on another antibiotic right now. Please pray for health in Ben's lungs. We trust in the one true God who is able to do all things. We ask of Him to do a mighty work in Ben's body and to give Ben complete health.

Insurance issues

The Fergusons are dealing with some insurance issues right now. Please pray for resolution and full coverage of the claims. Thanks!

New House and Bad News

The boys in the moving truck as they leave their old home.

They are really enjoying their new home.
Their address is 0N556 Herrick Drive Wheaton, IL 60187.

It has been an intense 2 weeks for the Fergusons. They arrived home from New Hampshire with one week to pack up their house. Then they closed on both homes on the same day which was crazy to say the least. The day they were moving, they received a call saying Ben had cultured Pseudomonas aeruginosa. This is the "bad" bacteria in the CF world due to being the most common cause of lung infections. Eventually it may colonize in Ben's lungs and be responsible for damage to lung tissue as the disease progresses. There was a drug created in 1997 called TOBI, the first aerosolized antibiotic designed for CF, that is a great weapon against Pseudomonas. Ben has been on TOBI for the past 2 weeks and will continue for another 2 weeks. On top of Ben's regular chest therapy and pulmonzyme, TOBI is a twice a day inhaled antibiotic that takes about 20 min each time. Its hard for a 3 year old to sit with stuff strapped to his face and body for 45 mins twice a day. . . everyday. So far Ben has been responding positively to TOBI and his symptoms are improving. So the plan is for Ben to be off TOBI for a month then back on for another month. If his symptoms worsen then he may have to be admitted to Children's Memorial Hospital for IV antibiotics.

Please pray for Ben to be rid of all Pseudomonas in his lungs and that God would protect him from it in the future. Thank you for your prayer support of Ben and our family! We are very grateful!

Summer vacation to NH!

The whole family had such a fun time in visiting Poppie and Lannie in New Hampshire. They spend two weeks fishing, playing with cousins Cole/Olive/Asher/Claire/Siena, riding in Poppie's boat, going to StoryLand Amusement Park, and going to town for Bailey's Bubble ice cream cone with sprinkles! Ben had to go on a two week round of antibiotics while NH but that didn't slow him down. He managed to get stung multiple time by bees causing his lip to swell and fell out of the boat head first while fishing. He is just curious enough to find trouble wherever he goes. God is good and Ben is full of life, laughter and mischief!

Family in the summer time!

During the week of Fourth of July, Ben was busy playing with his cousins, being enthralled by the dinosaurs at Brookfield Zoo, going to the Wheaton parade, and soaking up the sun at the nearby pool. Ben's health has been doing great this summer and he has been very energetic and full of life during every activity he is involved in.

The One Year Mark

Ben with his cousins at Brookfield Zoo - seeing his obsessions - the dinosaur exhibit!

A year has gone by since Ben has been diagnosed and God continues to prove his faithfulness! Paul and Michelle sold their house a couple of weeks ago and have been on the hunt for the perfect location, setting, and opportunity for another home where they will share new memories! Of course Michelle did extensive research and found the PERFECT place! It is located 5 minutes from the Academy, is on a half acre of land, has four bedrooms, and cries out "Fergusons!" Paul and Michelle placed a bid on the house and unfortunately were runner-ups. It was sad because their hearts were set on this new house. Then, on Ben's anniversary of his diagnosis - the relator called back and told Paul and Michelle that the family before them declined and they got the house!

And we wonder if God has Ben's life in his hand. And we wonder if God is in control. Hmm...it's been proven. God is near. God is good. God is in control!

We thank him for what he has done, for what he is doing, and for what he is going to do in Ben's life - for his glory!

Colorado Trip!

The Ferguson family went on a trip to Colorado with Wheaton Academy and had such a great time!  They spent 5 days at Deer Valley Ranch near Buena Vista, CO.   The boys loved the horses and we spend a lot of time at the corral.  The cowboys were incredible with the boys.  Ty, Ben and Caleb borrowed some cowboy boots during our stay and they never took them off.  Ben also got a hat which he proudly wore everywhere.

Summer is here!

Ben playing in the tree at Ty's soccer game. 

The boys playing with chalk in the garage. 

Paul's birthday morning.

May 8th Ben had his routine CF clinic visit with Dr. McColley and NP Stacey Vanderbranden.  We are really blessed by the medical care that Ben is receiving.  Overall, Ben is doing well!  His lungs sound good, his BMI is 66%, and he has grown an inch in the past 3 month.  Dr. McColley encouraged Michelle and Paul again to do vest treatments and nebulizer twice a day.  Since Ben was a later diagnoses and the x-rays in the hospital this summer showed some potential lung damage, he is at a higher risk for future progression.  It was a good reminder.  Michelle and Paul also talked with the doctors about summer nutrition for Ben.  He needs extra salt in the summer as he loses a lot through his sweat.  This will also make Ben more prone to dehydration so increasing liquid is vital.  We are really hoping he has a good healthy summer!

Easter!

Ben hunting for eggs on Easter weekend!

The usual scene of Ben following his big brother Ty.

Ben with his cousins ... getting ready for the egg hunt!

Ben's brother, Tymon, got a cold and passed it around to the family!  Ben came down with it this past Saturday.  Paul and Michelle tried to help him kick the virus with increased treatments, but he it wasn't working.  On Wednesday he was put on a two week oral antibiotic.  Please pray for Ben's family to maintain health after Ben's course of antibiotic. It would be a blessing for Ben to not get sick especially with the weather getting nicer!  

VX-809

The Cystic Fibrosis Foundation announced last week that they are beginning phase two trial for VX-809.  This drug has a potential to treat the basic defect in cystic fibrosis - a gene and its protein product, called CFTR.  

Here is apart of the article that is on the CF website:

"CF treatment involves the use of multiple drugs that address the symptoms of CF, however no therapy currently exists that targets the underlying cause of this disease,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “VX-809, which today entered Phase 2 clinical development, may have the potential to play a significant role in changing the future course of this disease for people with CF.”

 

"The advancement of VX-809 into Phase 2 development demonstrates our commitment to improve care for patients with CF," said Freda Lewis-Hall, M.D., executive vice president, medicines development, and chief medical officer of Vertex.  "This Phase 2a trial is designed primarily to provide a safety, tolerability and pharmacokinetic evaluation for VX-809.  Any additional signals observed in this trial, including changes in sweat chloride and nasal potential difference, that indicate VX-809 has an effect on measures of CFTR function may be highly informative and encouraging for planning future clinical trials with VX-809."

WHAT A BIG GOD we trust!!!!! Again we are reminded that Ben's every breath is in good hands!  This is exciting news about the advancements in medical technology.  We can only pray that God will use this medication for his glory to heal cystic fibrosis patients, like Ben!  

Matthew 9:27 - As Jesus went on from there, two blind men followed him, calling out, "Have mercy on us, Son of David!"  When he had gone indoors, the blind men came to him, and he asked him, "Do you believe that I am able to do this?"  "Yes, Lord,"  they replied.  Then he touched their eyes and said, "According to your faith it will it be done to you"; and their sight was restored.

YES LORD ... We believe that you are able to do this for Ben!  May a cure be found in Ben's lifetime!  This is our prayer!  According to our faith we will see it be done!  FAITH!

Water Park!

The whole family was given a gift to stay at Key Lime Cove Water Park in Gurnee, IL for a fun trip for the kids!  They adventured to the park this past week during Paul's spring break.  The boys were so excited to go!  They had a fun time playing in the water, going down the slides, and having a "sleepover" in the hotel room.  The pictures taken under the hot diggety dawg sign was dedicated to Caleb because that is his nickname!

Overall, Ben is doing great!  He is staying healthy and having fun with his brothers!  

Psalm 123 - I lift up my eyes to you, to you whose throne is in heaven.  As the eyes of slaves look to the hand of their master, as the eyes of a maid look to the hand of her mistress, so our eyes look to the Lord our God, till he shows us his mercy. 

Have a great day and thanks for checking up on Ben!  

Ben is 3!!!!!!!

We had a great time celebrating Ben's 3rd Birthday at Wheaton Academy's gym this past weekend (his official birthday is on March 17, St. Patrick's day).  A few of Ben's friends came to play games, run around, and eat cupcakes together.  It was a fun time and we are so blessed by Ben's life!

Children's Memorial Visit

Last week Michelle, Paul, and Ben went to Children's Memorial Hospital in Chicago for Ben's routine CF clinic visit.  The medical team tried to complete a Lung Function Test to see if Ben's lung capacity has reactive airways.  Ben was too young to sit through the test so there were no accurate readings.  Therefore, the test will have to be performed at an older age, but overall it was a positive experience to allow Ben to witness what he will have to do in the future.  Next, Paul and Michelle met with Dr. McColley and the Nurse Practitioner, Stacey VanderBranden.  They learned alot from them were grateful for their insight.

The big news was that Ben's BMI is up to 77%.  He gained a ton of weight over the past 2 months.  It is such a blessing to be over our goal of BMI at 50%.  In 8 months Ben has gone from the 5% to the 77%!!! Praise the Lord for His goodness and the gift of enzymes.

After the visit Paul and Michelle took Ben to see the Prayer Chapel that Paul and Ben went to every morning during this past summer.  Ben was so excited to see it and said a prayer of thanks for God's grace and blessings.  When they went to the Courtyard Ben let out a squeal of delight and said, "I love this place."  During the two week stay at Children's during the summer, Ben spent a lot of time in the courtyard running around because he could not go anywhere else.  

We are very grateful for God's faithful and goodness.  Ben came in to Children's Memorial Hospital as a very sick boy and left healthy and growing!

Psalm 34: 8 - Taste and see that the Lord is good; blessed is the man who takes refuge in him.

Special visitors!

Ben with Poppy

Ben enjoying his cousin Selah

Ben, Ty, Caleb, Zion, and Selah

Poppy and Lannie helping Ben with his vest treatment.

Grandpa and Grandma Ferguson (Poppy and Lannie) were in town last week and Ty, Ben, and Caleb were so excited!  They had so much fun with them.  The whole family traveled to downtown Chicago to see Missy and Hakeem (Paul's sister and brother-in-law), their cousin Zion, and new baby Selah.

Since Ben's last round of antibiotic, he has been doing so well!  He is healthy, energetic and playing constantly with Ty. 

We are so grateful for his health and pray it will continue through the end of winter.

 

Call for Prayer!

Two important things:

1.  Ben's new website is up and running ... VISIT  ben-ferguson.com!!!!!!!

2.  Yesterday Ben was prescribed a powerful antibiotic, Amoxicillin.  He was shown signs of either a sinus infection or a bacteria infection in his lungs.  He will be visiting the CF clinic tomorrow so they can obtain a culture to detect any possible bacteria growing in his lungs.    

Michelle has noticed for the past month that he was been more lethargic, not eating as well, and has a persistent cough. 

Please pray that the tests comes back negative!!  

We know Ben's life is in God's hands and we trust Him through every step!    

Ben and Ty like to drive their cars along the wall.

Ben loves to dump all the cars onto the couch and line them up.

Michelle and Paul have been debating if Ben needed to go on an antibiotic this week.  He has been doing pretty well but not his best.  The main symptoms were more irritable, less energy, coughing more, and harder to get him to eat.  Then Saturday night he woke up coughing around midnight and Michelle went to the Pharmacy around 12:30am to get Ben some antibiotics.  Sleepless night are never fun, but the antibiotic seems to be effective.  He is still not to his baseline but already Ben has more energy and is sleeping more soundly.  Please pray for wisdom for Paul and Michelle to know the when and when not to give Ben antibiotics.  They don't want to be too aggressive and give him antibiotics too much because of the risk of them becoming ineffective.  However, we want to make sure we prevent an exacerbation as it could lead to lung damage.

 

Ty and Ben love to play with their cars. They play with them everyday and for hours.  Ben can't handle it if the cars aren't near him at all times.  Ben has a bucket that he faithfully carries with him around the house. 

Getting Too Big!

Ben had his routine CF clinic visit earlier this week. Michelle and Ben met with Dr. Chung and the rest of the CF team.  According to the doctors Ben is looking good.  His lungs continue to sound clear and he is still gaining weight.  He gained a pound and a half and grew a little over an inch since Nov 21st.  It's hard for Michelle to keep up with his clothing sizes!  He is about to transition into his 3rd pants size in 6 months.  Crazy!  Ben's BMI (body mass index) lowered a little because his height increased more than his weight. So Michelle and Paul are continuing to work on his diet so he can gain weight and to get his BMI above 50%.  Ben also took a throat culture for a screening process and the results will come back in a week.

Within the next week Ben's official website (not just a blog) will be launched.  Looking back on all the pictures of when Ben was in the hospital will blow anyone away!  Within seven months of Ben's toddler years he looks like a completely different child!  It's amazing what the right medicines and treatments can do for his health.  

Deuteronomy 32: 3-4  -  I will proclaim the name of the Lord.  oh, praise the greatness of our God!  

He is the Rock, his works are perfect, and all his ways are just.  

A faithful God who does no wrong, upright and just is he.

For God's glory.

Merry Christmas and Happy New Year!!!

Looking back on 2008, we clearly see God has taken us through a year we will never forget.  Especially for Ben!  In June Ben was faced with a diagnosis that changed his life, and for the past 6 months of the year we have been adjusting to a new life style.    

For the past month Ben has been exceeding all expectations.  He is gaining weight, staying health (for the most part), and living an active, normal 2 year old life.  Ben has continued to do treatments twice a day.  He is also currently getting over a cold which was a concern for awhile.  We are grateful his cold has not got worse, especially since so many viruses are going around at this time of the year.  But thankfully Ben has not had to go back on antibiotics due to the decline in his cold symptoms.

Also, looking back on 2008, we clearly see the hand of God on Ben's life.  God has continued to strengthen our lives, our faith, and our hope for the future!  

Philippians 3:14  -  Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.

And for YOU!  Thanks you for being interested in Ben's life.  Thank you for being a prayer partner and helping Michelle and Paul carry the burden.  Thank you for investing your time to be a part of Ben's life.  

And now as we look forward to the year 2009, we strain toward what is ahead; we press on toward the goal and to look heavenly bound.  Our eyes are on the Lord for the year 2009, therefore we know Ben's life is in good hands!  

Happy New Year!               

Cutting down the Ferguson Christmas tree was a fun adventure. The boys just wanted to chop trees down. They weren't really into my desire to find the perfect family tree like Michelle. Paul started his basketball season so the whole family has spend many hours in the Wheaton Academy gym. Ty, Ben and Caleb love it and can't get enough!  Also, recently Michelle rented the movie Kung Fu Panda and it's the new obsession in the house.  Everyone now karate chops each other, Caleb included.

 

Ben is doing well. His throat culture came back normal which is another answer to prayer. Please continue to pray for Ben's health this winter.

Exodus 15:2-3  -  The Lord is my strength and my song; he has become my salvation.  

He is my God, and I will praise him, my father's God, and I will exalt him.  

The Lord is a warrior; the Lord is his name.

Good news for which we are thankful!

Ben had a CF clinic visit this week.  He has grown more and his BMI had increased from 30% to 42%.  He has almost reached his goal of 50%.  Also, his lungs sounded clear which is a praise!  He has had a couple of colds over the previous 2 weeks, so Dr. Prestridge put Ben on a 3 week oral antibiotic. Patients with CF always have a some amount of bacteria in their lungs (non-CF people would not have any) so when Ben gets a virus/cold the bacteria levels in his lungs increase. So even if he doesn't have a lung infection, Dr. Prestridge wants to make sure the bacteria growth in his lungs is contained.

Michelle and Paul talked with Dr. Prestridge about getting a lung function test for Ben. They only can do toddler testing at Children's Memorial in Chicago which is called an IOS (impulse spirometor).  There are plans being made to do this test in January. It will give us a guideline on how Ben's lungs are doing as well as help us track his the health of his lungs as we move forward. Also, because of Ben's excellent growth over the past 2 months, the doctor increased his enzymes to 3 for a snack and 4 for meals.

 

Ben is doing really well. He is coorporating well with his treatments, enzymes, and medicine right now.  He is very active and plays non-stop with Ty.  They are best friends and it is such a blessing to watch.  Caleb tries to be involved but can't keep up with the older boys, even though he wants to!  One of their favorite activities is to go to the Wheaton Academy's gym.  The boys absolutely love to go see their Dad and run around the gym. 

Thank you for your prayers. The prayers of a righteous man are powerful and effective. We continue to feel your prayers in our life.

Psalm 18: 30-32  -  As for God, his way is perfect; the word of the Lord is flawless. 

 He is a shield for all who take refuge in him.  For who is God besides the Lord?  

And who is the Rock except our God? 

 It is God who arms me with strength and makes my way perfect.

THANK YOU!!! Cruisin' For The Cure was a success!

A little fun with the committee members while setting up!

Ben passing out gifts!

Ben picking the raffle tickets for the winners!

Christina, the famous babysitter, came to see Ben!

Ben with the Lowe family!  Thanks for coming!

THANK YOU TO SHANE'S DELI AND WHOLEFOODS for the food!

Of course Grandpa could not be out of sight!

Me and Ben!

Paul and Michelle share their story!

The family on a motorcycle!

Sister love!

The T-shirts, registration, silent auction, and pictures of Ben.

The man of the hour!

Yay!  The first annual Cruisin' for The Cure was a success!  The total amount raised is not yet finished being counted, but for the first annual event we are very thankful for the support!  About 50-75 people attending the event as we ate lots of food, tried on our new sweet T-shirts, raffles with great gifts, and listened to Ben's story!  We are excited to see where Cruisin' For The Cure will go in the future as we hope to expand our awareness and get more and more people involved.  

We would especially like to thank the committee: Karen Crumback (the CFF event director), Mike Morrison, Fred Gizzo, Rob and Rebecca Wolgemuth, and the other Bollier/Ferguson members! 

Haha, that sounded like a Grammy award!!  Anyway, THANK YOU AGAIN for anyone and everyone who supported the event!  Every penny is being put to use to help find ways to improve Ben's life.  It's something so precious and valuable!  Therefore, we are so grateful for your support!   

Ben walking in ... VERY excited!  Please notice his high pitched voice!  It's the best!

One day at a time!

Ben's fingers are healing from his little accident!  The doctors are thinking that he will not need skin grafts anymore ... we're hoping and praying the status stays that way! 

We're also very excited about Ben's first fundraiser! We are praying every detail will work out and that God's name will be glorified through the event!  

Thanks for you prayers!

Psalm 34: 8  -  Taste and see that the Lord is good; blessed is the man who takes refuge in him.

One Week Countdown!

One more week until CRUISIN' FOR THE CURE!

Mark it on your calendars, write it in ink!  

Come to Ben's first fundraiser for the Cystic Fibrosis Foundation to support research to find a cure for cystic fibrosis ... and show the Fergusons your support!

NOVEMBER 8, 2008

*Refer to the blog below for more information!

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.