Happy 4th of July!

The girls have been in the hospital for 8 days now. On the 27th the girls started their ACTH injections along with Prevacid for their acid reflux and Nystatin for the thrush they developed in their mouth. On the 28th they both were sedated for their MRI. They were pretty groggy for the rest of the day but their appetite really increased. Later that night Dr. Desai ( neurologist) told us the results of the MRI. The girls have what is called Periventricular Leukomalaysia (deterioration or death of the white matter of the brain. They also have thinning of Corpus Callosum ( the tissue that connects both lobes of the brain). Neither one were significant enough for immediate concern so they will have a repeat MRI in a few months to see if there's any change. On the 29th their ACTH was upped to 20units twice a day. Over the weekend their blood pressure was closely monitor because it was running high due to the meds. On Monday the 2nd they received a second EEG which showed improvement during their awake period with some seizure activity during sleep. Yesterday the found murmurs in both the girls so the doctors did an ECHO and EKG. They found that Paige Left Ventrical Hypertrophy (thickening of the wall of her left ventrical of the heart. Bree had an Arrythmia so both will have a follow-up ECHO and EKG in a month. The girls haven't had a seizure in a few days now; hopefully a sign of things to come.