Wednesday, March 5, 2014
We'll it's been a LING time since last post, I know.... But we be had a lot going on! Will try to detail and upload pics later..,. For now she is back at Lakeshore Foundation for warm water therapy... Very moody, had to stop the $15000. Remicade treatments because of no more assistance- started Humira (which burns, she screams " mommy no please, take it out it hurts!!!" I can't stand much more!) eyes are in another flare since stopping Remicade!!!! So she's back on predforte steroid drops every hour-16 times a day... And dilating drops to keep her pupil wide open 24 hrs a day to prevent. Any scar tissue from forming etc..... She is a little nearsighted in one eye right now ... She isn't very happy, seems so down each day... Back to therapy to Children's Lighthouse next week! One minute she's fine... The next she's off crying or screaming about something little.... She also started Aa new pill this week to help with inflammation and pain... First time taking pills and they're pretty big do u can imagine how that's going!!! She had to have dental surgery at Children's Hosp (with lil brother)... Medicine/chemo methotrexate eating Way at teeth, do 4 back had to be pulled and spacers put in... Wow... So much more, just no time!!!!!