Speaking of comfort, we are fighting to help Aimee reduce her weight that the TPN has packed onto her. She is comfortable in her bed very reclined, but sitting in her wheelchair, bathchair, or even on the couch has become quite uncomfortable. As the other kids are growing, everyone piling into Aimee’s bed for family time is becoming less practical. While I am so grateful that she is comfortable in bed, I would love for her to enjoy sitting by the christmas tree as she has so loved in the past, or be able to sit in her chair to be a part of family activity. Unfortunately the calories in her TPN have already been reduced very significantly without effect. She finally has stopped gaining weight at 600 calories a day… we are presenting our argument to her nutritionist and GI specialist to reduce even farther. They are quite hesitant as she is already as low as they feel confident without causing any immediate danger to her organs. They are running more calculations and we are hoping there will be a solution. As the hospice nurse said today, her face looks like she has been put on steroids. :(
All in all this past month has been the most stable time period for Aimee since last summer. These days are what I prayed for all through those long months in the hospital. We hoped for home, for comfort, for happiness, and for health. These days we are living right now are the fulfillment of that wish and we have to live them without thought for the future. Today we are making memories.
Two prayer requests, beyond that the above would continue:
Ability to cope, to keep going. We are worn down. As well as Aimee is doing, she still requires intensive around the clock care and the weight we carry is unceasing. I am finding myself dealing with sensory issues and just weird side effects of either lack of sleep or PTSD or whatever all this is. We all, kids included, have been feeling deep, deep pain. Sorrow. Feeling that we have less of Aimee than ever. We worry about each choice we are making and all the ones we made before. We vacillate between gratitude for being here and overwhelm at still being here.
Another prayer request, Ed is having a fusion done on his lower spine in early December. We chose this time for his surgery as our dear niece Alyssa has committed to helping us with Aimee’s care through the winter. Once this season is complete, we have no guarantee of consistent help, so we feel that we need to go forward with surgery now. I am praying for success, for Ed’s pain to be greatly reduced so that he is no longer constantly limited by it. And praying for superhuman stamina for me as I go forward with my teammate sidelined for a time. I am praying for a peaceful season of healing and restoration for Ed.
Last and best, a photo dump of recent cherished moments:
And for extra, the younger 4 kids learning and living life:
