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.