Please view the link below to see one of our Foundation Members in action:
Linda Burke earnd an "Exemplary Award", one of the top awards presented in the state of Maine by First Lady LePage.
Thanks Again, and many of you are "Exemplary" in your day to day activities.
Bill and Cheryl Biermann and all of the Children with…Continue
Added by Bill Biermann on April 26, 2011 at 9:52am — No Comments
Hi all, this may actually be better off in the dialysis forum. But I need experienced people to see this and answer, possibly. Nathan had a clot in his fistula, (we think), that disolved itself.This was a little concerning, but since he gets heprin from dialysis 3xs a week, we figured it was a one time deal.
Today, they accessed the fistula okay,(it is still developing), but when he drew blood for labs it was goopey. I asked, and sure enough they said it was fibrin,…Continue
Hi everyone - we had a GREAT day Saturday and things went well. I was waiting because a friend put together a video that is on facebook of the hike - but I need him to get me the file so I can put it on here - in the meantime here's a link to some pictures from Saturday.
Added by Bill Biermann on April 18, 2011 at 9:51am — No Comments
April 14th was a special day for the Burke Family. The State of Maine has a system in place to to recognize volutneers. However, they also have process to choose exceptional service. So on April 14th, Linda was one of the finalist for the Maine volunteer of the year Award. She was invited to attend a ceremony sponsored by the Governor of Maine, to be honored by the Governor's office, and received a special award. !
The Foundatoin is honored to have so many of…Continue
I'm wondering if anyone has encountered vision problems?
Jack has been battling headaches for quite some time; he wears glasses but recently started saying that he didn't think the Rx was strong enough. He went for an eye exam yesterday and our optometrist discovered that he does not have central vision in his left eye! He went to straight to a retina specialist who ruled out a problem with the retina, but thinks there is a problem with his optic nerve.…Continue
Added by Phyllis Ann Talbot on April 13, 2011 at 8:18am — No Comments
Hi all, thought i should post an update on Ash as its been a while. On the whole Ash is doing really well, and mostly things are cruising along relatively stable. His LDH levels are still never in the "normal" range and we tryed reducing Ash's neorecormon (aranesp) as Ash's doc thought that because his bloods are good that he probably shouldnt need it but when we went to fortnightly instead of weekly his Hb dropped quite alot after a few weeks so we went back to weekly. Ash is just trying…Continue
As you may have noticed, the company…Continue
Here's a cool article about the hike in our local paper! Also just heard Melissa Hearn's aunt had a FABULOUS 'splinter' fundraiser in honor of Bryan for the hike from PA - competing with the Aunt Sarah/ Uncle Warren for biggest out of town fundraisers - and think they may have beat the Milford posse this year ;-).
The more tradtionally-styled medic alert logo bracelets and necklaces with the usual pendants and dog tags have just gotten a tech update with the advent of USB devices stored right inside! Since medical USB devices are small and portable, these specialty thumb or stick drives for computer access can be utilized to store a gigabyte or more of an aHUS patient's medical history, lab or test results, and other pertinent, health-related data. Most medical USB devices offer password…Continue
OK - whew - should say what a couple of weeks!! Hyde started almost 2 weeks ago with a bad sore throat and a low grade fever (yes - pretty much for the last 2 weeks - welcome to immunosuppression!!) Anyway - his strep was negative and our amazing pediatrician who we love - wanted us to go ahead and bump up labs a day last week to try to figure out what was going on. Good news is his labs last week were pretty stable - bad news - one of his viral studies (and i'll…
i woke up this morning thinking about how on the 28th of march chloe has been dealing with this disease for three years. it doesnt feel like its been that long. well lil miss has been staying strong, i find it amazing that we take away epogin in feb and she is maintaining her blood levels they are low but they have been lower. i have to believe that god has a plan and that I am just supposed to wait. chloe on wed will have some…Continue