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.