Still here, still seizures but they are subclinical (she doesn't do anything outwardly to suggest she's seizing). Planning to do more IV medication tomorrow and hopefully go home Friday.
ONTO THE GOOD NEWS! Evie had her skeletal x-rays last Friday... and her bones are showing signs of improvment!!! Especially her long bones (arms/legs) and ribs. They are all showing "new bone formation," LOVE those words! I cant wait until her little ribbies are strong and she can get off of this oxygen. I miss my "wireless" sweet baby face so much. This is the news we've been waiting for, it shows that her clinical trial is working. PRAISE GOD! A lot of people have been asking what we do next and I finally have an answer... after these 24 weeks we move into a 2 year "extension study." Same drug, 3x a week at home, with doctor visits every 3 months instead of weekly (: We can do that!!!
Well I'm typing with one hand so I can hold Eve, I will update more later.
Love you friends!!! Love sharing the news with you!
"I wait quietly before God, for my victory comes from him." Psalm 62:1