Cameron and Kacey

Cameron and Kacey
My Beautiful Angels

Sunday, February 12, 2012


So, apparently I have not updated my blog in a while!! My Mom keeps saying, "Kris, you really should update your blog so people can know what's been going on." And typical me keeps saying, "Yup! I'll do it tomorrow." Well, tomorrow is finally here.
Well, in my last post, I was going to have surgery on my shoulder. Well, that never and will never happen. It looks as though I have permanent damage to the muscles and the nerves in my shoulder and probably will never regain the strength or use of my right arm. I attend a pain management program and the doctors there have actually found nerve medications that take away the pain, so I am coping with everyday life by becoming more of a lefty and doing the best that I can. I find it difficult to do some things, like lift anything that needs two hands or blow dry my hair, but I am trying to adapt to my new "lifestyle." I am also trying acupuncture to see if that will help as well.
As for my voice, that is pretty status quot as well. It doesn't get any better, but doesn't get any worse either. I can be heard on the phone now for the most part, so that is good. My biggest issue lately is aspiration. Even though I still have my feeding tube and take NOTHING by mouth to eat or drink, I am still aspirating saliva and what not and have ended up in the hospital a few times with pneumonia. Most recently, just this past week. I went for a check up with my oncologist on Wednesday, and ended up being admitted with a 103* fever and a very low blood pressure. Luckily, they found out what it was quickly and I was only there 2 nights. I know now that I need to call my doc as soon as I have even a slight fever. She says this is going to be a common thing for me, so I need to catch it early so I don't end up in the hospital.
I was also accepted into a medical research study in November at Boston Medical Center to try electrical stimulation on my vocal cords. I have to stretch and do exercises with an electric stim device on my neck twice a day, for six days, for 13 weeks. It was a bit time consuming, but if it worked, it would all be worth it. I have had three swallow tests with the study and actually have one more in two weeks so they can compare data. The last two tests, I aspirated the liquids they gave me to try and swallow, so it is not looking too good, but we'll see what they say at the end of the study.
I am still not working. I think it would be extremely difficult to do my job being as restricted as I am. But I need to find something, as money doesn't grow on trees and I have two children and myself to support.
So that is where life stands right now. The kids absolutely LOVE school and are both doing very well. That is more than I could ask for. Kacey turned six in December and Cameron turns eight next Saturday. I am not sure where the time goes and how they grow up so fast and I never get any older. Amazing how that works. :)
I will try to keep my blog updated a little more frequently. I promise not to let it go 7 months next time, Mom!! Have a happy, healthy week everyone!