So - we shouldn't really be surprised - since we began this journey Hyde has always managed to make this as complicated as it's possible to be!
So the good news - Aunt Sarah and Uncle Warren made it safely here from Pennsylvania through the millionth snow storm of the month apparently and it's supposed to be 60 and sunny here.
Bad news - typical - Hyde's been pretty well for the last 6 mths going to preschool, going to church and Kids Kingdom, we pull…
After a little bit of confusion yesterday we went down to Egleston bright and early this morning for Hyde's first Soliris (Eculizimab) infusion as well as all his pre-op stuff. The infusion went well - he got the medicine over about 2 1/2 hrs and was busy watching TV and eating pancakes and later syrup and butter with a spoon - ughhh. he needed the food since they took SO much blood for the poor little guy - between the pre-transplant labs as well as alot…
Zach's 10th b-day was Jan 18 he passed away three days later on the 21st. due the flu.
Never diagnosed! We will have a diagnosis for Ben someday. That is my life long goal until it is achieved! I owe it to Zach.
OK so I kept trying to wait until we knew for absolute certain and then I realized there's always going to be something that can come up and throw us off track so here's the news.
After many ups and downs and ups and downs over the last month - Warren (Hyde's uncle, our brother-in-law) worked his butt off and resolved the items that had come up at his 2 day eval last month. He got the final approval to donate last week from the surgeon - Yippeee!!! So now it's…
well we made it home before christmas thank god... lil miss healed well from all that went haywire after surgery on her tonsils and adnoids for those that dont know we spent nine days inpaitent after her surgery she was having problems they thought that maybe she had aspirated some blood during surgery and that caused some atelectisis in her lower left lobe she required 5 liters of o2 from tues to sat in the picu.. then we went to onc till thursday she caught a…Continue
Every now and again we all face crossroads and hope that our decision-making skills are at their finest.
Personally, I prefer fun little decisions about frivolous matters that pertain to gift choices .......or whether my new winter hat borders a bit too much towards 'eccentric lady who probably lives with a dozen cats' rather than the lighthearted 'zany, carefree Mom with a zest for life' look I was going for!
Protecting the privacy of website members…Continue
My journey of kidney failure and aHUS.
Just a quick question....
Does anyone have a child who never required plasma infusion, exchange or Soliris to help get out of an "episode" or relapse?
Hello All - Happy New Year.
Health and Happiness :)
Just to bring you up to date, we are waiting for test results from Germany on anti FH antibodies, will be sending blood to France Jan 11th for MCP (Membrane cofactor protein), beyond the selective mutation analysis already performed in Italy a few years ago and platelet aggregation testing here in Montreal.
Germany and France testing is very new type of tests so that is…Continue