Thursday, November 17, 2011

A Note of Thanks & an Update...

The outpouring of love and support we have received since mom fell is absolutely amazing! It's as though God knew we just didn't have the strength anymore to conquer this without a community of people lifting us up. Thank you so much for your encouraging emails, comments, tweets and prayers. We have been loved on by strangers and friends alike. This experience has really shown me the power of an encouraging word. I've seen what it really means to be "family". The selfless acts of providing a meal, making phone calls and sending letters has been a true representation of love. 

I think it's easy for care-givers to be forgotten and trampled on. I see the way my dad cares for my mom and the rest of us- without giving it any thought. He has seamlessly become the glue that is holding us all together. He is a rock and I am so grateful for his love and strength. For those of you who have been holding him up in prayer and calling to check in on him- thank you! Thank you for recognizing that this isn't easy for him and that he is hurting as well. 

It has been an absolute struggle to obtain the results of mom's testing last week. Her primary care doctor is amazing but his staff lacks in care and competency. We made several phone calls and after 4 days we finally received the results. Her x-ray showed spurring and a possible tear in her rotator cuff. She has been referred to an orthopedic but is reluctant to schedule an appointment at this time. I understand her hesitation. Another specialist, another surgery... and for what? It's a lot to take in and it offers a lot of unanswered questions. She had some additional labs done that came back with questionable results-- she will re-test in a couple of weeks to see just how accurate these labs were. 

She is still in a significant amount of pain. It's hard to watch her deal with it and not be able to help. She is so strong though- and she faces everyday with vigor and an intense sense of gratitude.

Thank you for blessing us with your prayers!

Friday, November 11, 2011

The day she fell...

I've hesitated in writing this post. I've written and deleted. I've cried- I've laid awake-numb, just waiting for the alarm to sound. It's a fine line I'm treading. On one hand- I selfishly need this blog for my emotional sanity. On the other hand- I write to preserve the memories. Good or bad, tragic or stoic, these fleeting moments are heartfelt, raw and honest. In this whirlwind of triumphs and defeat I am striving to hold on to something tangible and pure. 

I realize that beyond the uncomfortableness of being so exposed there is a greater purpose. I know that if I don't document every detail and struggle than this blog is worthless. So the details- the really hard to digest moments of what ALS brings will be shared... because I can't do this alone. We are designed to be a people of community- of support and love. So with that being said... here is where we have been the past couple of days... 

It was early Wednesday morning (Nov.9,2011)- approximately 4:00am. The house was quiet and still- full of warmth. Simply, a retreat from the chill bitter air outside. As the heat radiated through the walls, mom found herself too warm and felt it best to turn off the heater. As she carefully crawled out of bed to make her way down the hall- she fell. In a split second, she found herself laying on the ground in the doorway of her bedroom. Dogs instantly at her side. Scared, dad jumped out of bed and ran to her side. With no explanation other than feeling like she had blacked out, she fell. In the midst of the fall she injured her shoulder and arm. At this time, we don't know the extent of her injuries other than she is in a tremendous amount of pain.

To say that a black cloud of emotions have been hovering over us these past couple of days-is an understatement. In the midst of shock, fear and pain we collectively have been quiet and numb. Until this point we were adjusting fine... we have been on a high knowing that mom has been stable and even showing subtle signs of increased energy. Though this fall could be completely unrelated to ALS we have to remain cautious. Falling is a sign of progression. Falling is an awful reminder that this beast ALS still exists in our lives. Falling regardless of the reason means that weakness is creeping in. This monster is slowly stealing our future. 

Each incident brings our family that much closer. Through the distance of our every day lives we are bonded so intricately with secret emotions and fears. Though each of us acts as a caregiver in separate ways we understand the heartache we all experience. 


As I bathed and dressed mom Wednesday afternoon I fought back tears for her. I was once told by a friend that the heartache and pain, the anger and fear, I feel is no where close to what she is experiencing. With that perspective, I tread through these moments with an intense adrenaline- a sword in hand ready to fight and protect her the best I can.   


We have been covering her in prayer and supporting her in our own unique ways. She has been weak, in pain and in bed since the fall. Please remember her in your prayers today. Send her a note of encouragement and love. 


As always, I will update as soon as I have any info.

With love,

Tuesday, November 1, 2011

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!...