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.