2.1.18 New Life

I have so many words of gratitude to express to so many people. We have been carried with many gifts and have not had to worry about any bills being paid. It is incredible that after this long season, we are not holding unpaid bills in our hands. Thank you for walking through this with us and caring for us in such practical ways. 

Aimee is doing well. She is just recovering from a respiratory bug that she has been fighting for a couple weeks. It was a much easier sickness to handle due to the breaks in care that the nurse provided. Also, we did not have to struggle with dehydration and malnourishment due to the j-tube continuously feeding her intestinally. 

Her wound officially closed and we got the all clear from the wound care dept. There is only a simple dressing left and it shouldn’t be needed too much longer. 

She is having more seizure activity again and still only tolerating short periods of activity. She is spending most of her time asleep in bed and needing more middle of the night care. She is just not her happy, comfortable self still. 

I have been dealing with a lot of ramifications of new supplies, new home care issues, new prescriptions, ect. Insurance makes every step complicated. We are also in the middle of getting nurse care set up through the school. This has required a lot of help from the Medically Complex Care doctors at Children’s. We are hopeful to finish up that process in the next week and attempt starting Aimee back into school. She hasn’t been since June of last year. 

For me, the nursing hours has been life changing. There has been so much freedom that I haven’t experienced in years. It is amazing! I have been able to take the boys to the library every week, church events, and errands. I can meet up with another mom or go to free community events. The world has opened up. What I am really most excited for is the ability to focus on the boys and their learning. 

Aimee has multiple appt days during each of the coming weeks. Finally going to get all her providers caught up on her new status post surgeries. Hopefully as the weeks progress, we will see more moments of Aimee returning to her typical self than we have so far.