I WAS JUST REALIZING I HAVENT BLOGGED SINCE BEFORE CHLOES LAST APT.. WELL THE 22ND OF MARCH WAS HER APT AND THE BLOOD WORK LOOKED GOOD.. BUT DR. H SAID REALLY HE DOESNT KNOW WHAT TO DO WITH CHLOE NEXT.. HE DID SAY WE ARE STOPPING PLASMA TREATMENT HE FEELS WE ARE PUTTING HER AT RISJ FOR NOT BEING ABLE TO RECIEVE A TRANSPLANT WHEN HER TIME COMES. HER LAST ONE WILL BE IN MAY. HE SAYS WE ARE JUST GOING TO HAVE TO WAIT AND HOPE WE GET SOLARIS APPROVED BEFORE RELAPSE.. TO BE HONEST THIS ALL MAKES ME WANNA CRY. I KNOW THAT CHLOE IS DOING WELL, BUT I DONT KNOW WHATS NEXT THERE ARE TIMES I JUST LAY WITH HER AND CRY WHILE SHE IS SLEEPING BECAUSE I LOVE HER SO MUCH AND I CANT STAND THAT I CANT MAKE HER BETTER.. BUT MY FRIENDS GOD HAS A PLAN FOR MY BEAUTIFUL ANGEL AND SHE HAS MADE ME A BETTER PERSON.. WE WENT TO CALIFORNIA FOR VACATION IT WAS AWSOME AND THE WEATHER WAS A DREAM.. I WILL POST PICTURES AS SOON AS MY EXTENAL HARDRIVE GETS UP AND RUNNING NEXT WEEK. I KEEP PRAYING FOR SOLARIS AND WITH THE SSI APPROVAL HOPEFULLY IT WILL BE SOONER THAN LATER.. THE DOC UPPED HER MEDS FOR BP BECAUSE SHE IS STILL ON IN THE 128/80 RANGE SO SHE IS NOW ON 500MG OF LABATOLOL, 10 MG OF AMLODIPINE, 20 MG OF LISINOPRIL AND 600MG OF IRON, 1500 UNITS OF EPOGIN, AND SINGULAIR WOWZERS ITS ALOT..... MORE THAN AN 80 YR OLD LADY I TELL YA AND SHE STILL IS HIGH.... I WILL UPDATE AFTER BLOOD WORK ON THE 22ND OF THIS MONTH THERE WILL BE NO PLASMA THIS TIME WE WAIT TILL MAY THEN STOP.. GOD BLESS ANY FAMILY DEALING WITH THE UNKNOWN AND I KEEP PRAYING FOR A CURE
TILL LATER LISA
Comment
© 2018 Created by Deborah Lewis.
Powered by
You need to be a member of The Atypical HUS Foundation to add comments!
Join The Atypical HUS Foundation