Pirates Make off with Nearly 20K!
Pirates of the St. Louis Area converged on the Carpenters' Hall, March 20, 2010 and made off with nearly 20K, say participants in an event which included a live auction, which included everything from a vacation in Branson, Mo. and a hockey jersey signed by the entire Blues team, to dancing lessons and a silent auction of everything from new children's books to an…Continue
My 8 year old daughter has experienced three HUS episodes and all three times semmed to be triggered when she caught a stomach flu.
I am considering getting her Dr to give her the Rotarix Vaccine which prevents Rotovirus.
I am just afraid the side effect might actually put her in another episode.
Has anyone vaccinated their child for this?
Have any of your Dr's suggested it?
Your feedback would be greatly…Continue
Linda asked me to post on Chloe's first days on Soliris...
As a little background - Chloe is 10 months, diagnosed on January 22nd, getting near daily ffp/cpp, which seemed to be working...except that her tiny little body couldn't handle the high levels of fluid. She was fluid overloaded during an outpatient infusion two weeks ago, which sent her into her latest hospitalization. Chloe's doctors, Drs. Listman and Schurman at Golisano Upstate Medical Hospital in Syracuse, have a…Continue
Hi there - really quick - just wanted to let you all know Hyde had his follow-up appt with the surgeon today and it went great - we were there maybe 10 minutes - so that's good. Also - I'm so afraid to jinx it but Hyde's BP has been better the last 3 or 4 days and he's still on only 2 BP meds and one of those is a lower dose than before the surgery, and again - we are hoping that this will continute to drop. Hopefully we can give you…
we have been busy in the peterson home. we finally got the results of her blood pressure monitoring and some of her pressures were higher than he wanted so he is going to fiddle with some of her meds.. chloe goes to see the doc on monday we need some prayers for good blood work because we are supposed to take our family to california for vacation next friday. this is the time of year i get all overwhelmed on the 28th of this month it will be two years since my baby…Continue
We've been busy crafting a new website feature that we hope will be useful to aHUS patients, parents, and all those interested in the day-to-day issues involved with atypical HUS. In a stroke of brilliance, Cheryl Biermann recognized a need for "Atypical HUS 101" and formulated an outline of essential information. Jodi Kayler took the ball and ran with it, creating an overview of aHUS issues and critical points to consider for effectively managing the care and treatment of aHUS patients. My…Continue
Added by Linda Burke on March 13, 2010 at 9:57pm — No Comments
Well, life in general has been good, I've gotten over the fact that my potential donor backed out on me. Ever since that day, life has been a roller coaster. My own mom brings up a point that she would like to get tested again, but we have one mian issue on our hands and that is Facter H. Would the factor H be a problem? My mom contacted my very nice and helpful transplant coordinator at Johns Hopkins to see if the factor H would be an issue, she is going to take that up with the team to see…Continue
A month ago I had an individaul come to me offering to donate a kidney transplant. Last night at the time of 8:38pm, I get a phone call with a laughing tone on the other end, telling me that he is going back to his ex to get married and that I am not to receive his kidney. This brought my hope level up and now I'm hurt, and have dealt with disappointment long enough. I'm ready to find a donor, or just accept a deceased kidney at this point, to be honest. It seems like as my hope goes up, my…Continue
Been awhile since I've updated on my Brody man so I thought I would just leave a short note and a hello. Sorry Phyllis to break your blog run:)
We saw Brody's nephrologist today, things are looking good for Brody's kidneys. Dr. thinks they have recovered 100% from his occurance almost a year ago (March 6). Brody has been sick with colds or viruses on and off for the last couple of months thanks to his big sissy who started preschool this year. He seems to be…Continue
Yippee!!! We got home a few minutes ago and Hyde's sleeping on the sofa! Sorry i didn't update earlier but we had kind of a rough evening/night/morning with blood pressure, itching, and pain for Hyde - so didn't want to jinx anything until we were on the way home. Hyde didn't get too much sleep last night - think the rash and the surgery finally caught up with him and he was fussing pretty much every 5 min or so but seems better today -…
Oh well - guess we got a little overexcited - we really had thought Hyde might be going home today - but…
Hey everyone - just to let you know - Hyde's still doing really well - he stayed with Bill last night and did well - only my tough little kid would rather deal with the pain of having two organs taken out than to take any medicine he's not used to :-(. He did take some of the 'good' tylenol yesterday midday - and took a long nap and then was able to get up and move around a…
Added by Phyllis Ann Talbot on March 3, 2010 at 9:23am — No Comments
Hey there everyone - just in case you haven't been able to get on the carepage - Heather mentioned she was having some problems - I'm actually breathing a little easier - see latest update below - but basically so far so good! ;-)
Our night and PD!!
Hey there everybody - I'm sure you are all SICK of hearing from us by…