Thursday, January 26, 2012

Progress Report


Can you believe it’s been 3 months already? This past year we have lived our lives in 3 month intervals as if we were hamsters running through a wheel. By the time we finally accepted the previous prognosis it was off to the clinic again only to send us spiraling down in a blue ball rather than a red one. I really believe that each of us have been walking around living our lives in a haze. Our minds clouded by the thick grayish film of “what-if”. I am not naïve enough to think that we are out of the thick of it by any means. But, I do believe we are adjusting and figuring out what works for our family, how to cope and how to find rays of sunshine in the midst of the thunder and lightning.

We are a team. We are all affected by ALS in a different way and we are learning how to support each other in every phase. For some- that may look like a night away, a long hot shower, an uninterrupted cup of coffee, or a respite from a day at the clinic. It’s amazing how refreshed and ready to fight you become when you are given a break… a chance to collect yourself. For this 3 month progression appointment that’s exactly what my dad was given. We do everything collectively as a group. Our presence if nothing else serves as a strong tower for my mom. But, sometimes even the strong tower needs to be supported.

Dad stayed behind this time. He kept Ryan for the afternoon and enjoyed a day of laughter and playtime- an escape of sorts.

I took the afternoon off work and picked up mom. We “talked” about the many upcoming events we have, the joy of dressing for an event, and the future of our families. We laughed and spoke of everything but the appointment we were headed to. For the first time, we had a long wait at the clinic. We saw so many broken people. I know I speak of it often, but, every time I cross the line into that clinic I am made aware of just how blessed we are. I am reminded of the grace and protection we have received. I always feel a peace wash over me… as if God is standing right next to me grabbing my hand and saying: “you are not alone- I am fighting this with you”.

Overall, the appointment went well. We were inundated with new clinical trials and studies that are occurring. We were greeted with love and patience and most importantly we were spared from more tragic news.

Here is the breakdown of the appointment: January 23, 2012

  • Lung Capacity held steady around 40%
  • Hand Strength has weakened slightly. She measured 30-40lbs. During the test it was apparent that her hands and arms get tired.
  • Her right hip and legs have weakened. She showed signs of getting tired and slight decrease in strength. However, she is still able to walk with little support- so we are very grateful this is progressing slow. 
  • Again, there was a significant amount of weight loss. She is down another 10lbs from her last appointment. This is so hard to hear and to understand and to accept. But- honestly, she is doing great with what she has been given. She is still eating for pleasure although it is very difficult. The feeding tube is an adjustment both emotionally and physically. She is definitely more diligent about doing them. The doctor ordered a pump so that she can use the time over an 8 hour period during the night to ease the discomfort. We are hoping this will be the solution to her weight loss. Regardless, she looks fabulous and she is trying her best. That's really all we can ask of her. 
Overall, mom is doing great with the cards she has been dealt. She is happy and staying positive. We are so grateful that she is progressing slowly.

As always, thank you for your prayers and support. Without it, our lives would be so much more difficult and so lonely.  For the friends who have been texting, sending cards and visiting with her- thank you! Thank you for being God's hands and feet. I hope this week finds you blessed beyond measure!
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