Hi everyone,
In just a few hours we are leaving for a much needed vacation to Smuggler's Notch. (It's the next best thing to Disney for those with kids, check it out! www.smuggs.com)
Rachel is better. The new treatments and we all fought so hard for a few months ago have made enough of an impact on her health that her neurologist is calling it "significant". We agree. The insurance company appears to be ready to approve another six months of treatment without the hassles we went through last time.
We had a scare last week when Rachel started running 105 fevers. It turned out that her PICC line was infected with Staph. But they pulled the line and she is herself again. (I guess when adults get a Staph infection it can be more serious...but we were able to get away with just getting rid of the infected line rather than admitting her to a hospital for tons of drugs.) It will be nice for her to go away somewhere with a swimming pool that she can really enjoy without having to wear a protective, air-tight, arm cover that cuts off your circulation! When we return, she will be getting a port implanted in her chest, under the skin, so she will receive her treatments through that. Surgery is on August 26th at Connecticut Children's Medical Center in Hartford.
Thank you all for your ongoing support...it has meant so much. As Cynthia once said, "Forget the pins...it's the people!"
In just a few hours we are leaving for a much needed vacation to Smuggler's Notch. (It's the next best thing to Disney for those with kids, check it out! www.smuggs.com)
Rachel is better. The new treatments and we all fought so hard for a few months ago have made enough of an impact on her health that her neurologist is calling it "significant". We agree. The insurance company appears to be ready to approve another six months of treatment without the hassles we went through last time.
We had a scare last week when Rachel started running 105 fevers. It turned out that her PICC line was infected with Staph. But they pulled the line and she is herself again. (I guess when adults get a Staph infection it can be more serious...but we were able to get away with just getting rid of the infected line rather than admitting her to a hospital for tons of drugs.) It will be nice for her to go away somewhere with a swimming pool that she can really enjoy without having to wear a protective, air-tight, arm cover that cuts off your circulation! When we return, she will be getting a port implanted in her chest, under the skin, so she will receive her treatments through that. Surgery is on August 26th at Connecticut Children's Medical Center in Hartford.
Thank you all for your ongoing support...it has meant so much. As Cynthia once said, "Forget the pins...it's the people!"
Glad to hear Rachel is doing better.
! I am sooooo happy for all of you!! I have been to the ER three times this week with friends; I have a 4th friend in CCU who opened her eyes this week & was nodding yes & no replies; & another friend still in the hospital ... never a dull moment.
