Today Grace went in for a test to determine if her body is producing enough steroids so that her immune system is back to normal. They had to draw blood from her every 15 minutes for an hour. The results will take a week. Continue reading Steroid Test
We had our followup appointment on Nov 20 with Dr. Doescher at the Minnesota Epilepsy Group in St. Paul, we had an EEG and then met with the doctor. We got some good news! They were able to detect sleep spindles in Grace’s EEG while she slept, this was something that was not present before … Continue reading Sleep Spindles & Organization
We got tuned down about a two weeks ago for nursing care for Grace. It’s really annoying when multiple doctors say with confidence, she gets a G-tube and you will get nursing hours the next day. We were denied because Grace’s care is considered custodial, but then again any infant care really is custodial. Fortunately … Continue reading Custodial Care
Grace is crying in her crib behind me, still wide awake and 10:25 pm. The medicine she is on really makes her wired! I’ll have to rock her soon… this parenting for sleep thing is extremely complicated and we never know if we are doing the right thing. Grace had two clusters of seizures today … Continue reading Mall, Menards, Target, Fareway — Oh the Places We’ll Go!
We saw both Dr. Kabbani today and Dr. Cook. Both were amazing. Dr. Cook wants us to take Grace off the steroids as of today — then in three weeks we’ll go in for a test to make sure that her body is producing the steroids that it should. If all goes well Grace (and … Continue reading Daycare for Exceptional Children — Here’s Gracie!