Well got the main tasks done for the night and thought I would post an update. Carol is progressing pretty well still. She got refit with her prosthetics and seems much more comfortable on the legs. She walked outside for the first time last week with the walker. The therapists are trying to step up to just a can soon. She still fights immense pan daily. She takes meds for that every few hours still. She has phantom pain, which is semi controlled with medication. I think that med is probably where the hair loss comes from (Lyrica). But she def prefers no phantom pain to hair loss. If that tells you how extreme it is. We had a great weekend. Got to go out to dinner..thanks mom and dad for babysitting for a bit. Her left arm seems to be healing well. The doctors at Harborview are thinking of doing another surgery on her right arm to relieve some scar tissue and tendon tightening, if I understand it right. We are psyched for bird day. Love Thanksgiving!!
Scott
10 comments:
Hello there-
I was on Lyrica for a month and had major hair loss. I am with Carol though, stay on top of the pain for sure. We hope you guys have a wonderful turkey day-
Thinking of Carol and try to keep updated on her frequently. I hope and pray her pain subsides soon!
I hope your T-Day is great! So many things to be thankful for.
Luvs n' hugs, Kari
Have a good Thanksgiving! Definetely a year to be thankful.
Luv
Pauline
Hi Scott - I recently found your blog by way of another blog I read (C Jane Enjoy It). Just wanted to let you know that there are complete strangers who have been touched by your and Carol's story and are keeping you all in their thoughts. I wish you all a very blessed Thanksgiving!
Lindsey
San Diego, CA (originally from Seattle)
Carol and Scott,
I am sorry that you are experiencing phantom pain. Carol, have you or Scott asked them about neurontin instead of lyrica? I am not sure if neurontin is indicated for phantom pain, but it may be worth a shot to ask.
Wishing you guys a very Happy Thanksgiving....Safiya's first. You'll be in my thoughts all day--as always.
Love,
Stephanie
Scott & Carol ~ I hope you and your family have a VERY HAPPY THANKSGIVING.
God Bless you ~
I have been reading about you and your sweet family for awhile and have been so touched by all you have endured. I was on Lyrica for a long time and I would just say be very careful with this drug. It can be quite addictive and damaging. I understand though that anything that helps with her pain is important to have. I wish you and your family all the best.
Love,
Melissa
I've followed your blog for most of this year.
It is beautifully written and I pray for your family often. We went though a very traumatic event with our daughter this year. She was diagnosed with Bacterial Meningitis and we came very close to losing her a number of times and she may have some life long challenges to endure. I know that Carol's story will teach our daughter strength!
It was a HUGE wake up call for us and has forever changed our lives.
You have inspired me to start a blog and begin writing Katie's story down. It's very painful, but also healing.
I have linked to your blog on mine. I hope this is okay with you. Please feel free to do the same.
http://leeleenews.blogspot.com/
Kristine
I have been reading and praying for your family. What a struggle, but you all seem to be handling it with grace. I pray that God grants favor on your family, and that the healing process is swift.
Something to think about- I had a very serious kidney infection earlier this year. Very high fever, serious meds, and surgery to follow. For a week I was completely drugged. Once I had the surgery and got back on my feet, I noticed my hair was thinning. It started falling out in handfuls, and was quite scary. It turns out that when your body goes into deep shock and stress, it sends a signal to your hair follicles to quit growing (it shuts down the processes that aren't necessary for survival) so that it can concentrate on healing. After about 6 weeks my hair was falling out in large quantities. I lost probably 1/3 to 1/2 my hair. I was freaking out. I did some research and found that it is VERY common after a serious illness involving high temps, infections and surgery for your hair to do this. It took several months, but it finally just stopped coming out. And then a few weeks later it started to grow back in. I have hair that is all one length, but now have hair in 3 inch lengths (I was sick in late January) where it has started coming back. I didn't change anything (except at the very beginning I added Biotin, but it didn't change anything), I just waited it out. Now that she is on the mend, her body has sent the signal to grow hair again and it is pushing all the 'dead' hair out. She should start growing new growth in the next couple of months. Just something to think about and look up (in your spare time, right??).
I wish you well, God's blessings to you and your family!
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