Progress Report

In complete contrast from the last progression appointment, the car was filled with laughter, worship music and a mild amusement of the morning activities. As dad drove the exact same path we’ve driven so many times before- we concentrated on light conversation and excitement for our upcoming vacation in paradise. The distraction of leaving this all behind for a week was enough to lift the burden of what this appointment was really all about. 

Mom outside of St. Joe's after her appointment
 As we made our way through the elevators and down the sterile gray hallway the jokes continued and the laughter became stronger. The doors to the clinic flew open with grace and we said our blessings as we passed by other “broken” people. We had no time to wait as mom was called back quickly. Each appointment is so time-intensive that the no wait time came with very open arms. We were greeted like family as each specialist flew in and out. We were encouraged, loved on and patiently listened to. We shared tears, joy and fear. We gave thanks, hugs and smiles and received them back in abundance. 

Ryan with Nana as she waits for her 2nd Peg Tube Surgery
 Although, each appointment is a reminder of this dreaded valley we are walking through we stayed encouraged. Mom’s tests were all stable and in one area she has even improved.  We will never take for granted the small things. The little moments of victory and miracles we experience. We are blessed even in the darkness… there is a small flicker of light- a fire that can’t be extinguished.

Here is the breakdown:  (Appointment was on October 17, 2011)

·        Lung Capacity held steady at 38%-40%
·        Hand Strength measured at 40lbs on both sides! This is incredible news! (Last progression appointment stats were a maximum of: 18lbs on the left side and 20lbs on the right)
·        Peg Tube has completely healed and looked great. (Since this appointment mom had an additional surgery to have the peg tube replaced with a Mickey. It sits flesh against her skin and is no longer a burden to hide and take care of)
·        Once again there was a significant amount of weight loss- mom was down a total of 14lbs. (this was taken very hard and instantly brought tears to her eyes. She knows the importance of maintaining her weight and yet it’s so hard to control. She feels beautiful and yet craves that weight back… it’s a hard line to walk)
·        Neck and upper back muscles have continued to weaken. This is a daily struggle. Her neck often feels sore, tired and weak. She is using a neck brace at home that offers stability.
·        At this appointment, paper work was signed to begin the clinical trial involving the Peg Tube. On Nov. 8th she will be begin her assessment and will be given her “formula”. This is a blind study so we will have no idea what formula she will be using. Her feedings will be closely regulated. This trial brings a variety of feelings… but, as a family we are grateful that mom is willing to participate as this should help encourage her to use the tube. She needs more nourishment than what she is currently receiving.

Overall, this appointment was easier to digest for all of us. We left feeling really encouraged and grateful for the minimal progression. Thank you from the depths of our souls for your continuous prayers and encouraging words for all of us. We feel them and we see God’s hand upon us.

We just came back from our vacation… pictures and post to follow soon! 

...sorry for the small font- I've tried to fix it multiple times with no luck!...


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