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!