I've seen a pretty big difference with Cora being on the infant Zantac. She's still only eating the minimum ounce volume per day but at least she's getting that and is still gaining weight. The few changes I noticed last week have not improved.
Monday was Cora's appointment with the pediatric Neurologist, Dr. Reggin. When Cora was in the NICU they did an ultrasound of her brain and found a few cysts so this appointment was to follow up with that concern. After reviewing her conditions, doing a physical evaluation, and again reviewing the ultrasound, Dr. Reggin ordered an MRI of her brain. The ultrasound just has too many shadows and the MRI will give better clarity and detail. He also wants to check each structure of the brain to ensure no abnormalities there. The MRI is scheduled for next month.
In doing the physical evaluation Dr. Reggin said she's "not as responsive as I'd like to see." That wasn't news to me, those were a few of the concerns I already had from the previous week. I did mention to him that her eyes don't focus or track very well and that she's also got a wandering eye. He looked a little closer at her eyes and recommend that we take her to a pediatric Ophthalmologist. That appointment is scheduled for next month.
Tuesday was Cora's appointment with the cardiologist to follow up my concerns from the previous week, particularly her fatigue. Dr. Burg did a limited echo and found the fatigue is not connected with the heart problems. Neither heart defect should make her tired like that. Bummer, now where do I go from here? Dr. Burg said Cora's pulmonary stenosis has worsened but not to the point of intervening with surgery, it isn't worth the risks at this point yet. The ASD is still there and "moderate in size" but not of concern right now. She slightly hinted that maybe the fatigue is a developmental issue with the brain and recommend I take Cora to the Guild School for a developmental evaluation. That appointment is scheduled for next month as well as her follow up with Dr. Burg to determine if surgery is yet needed for the pulmonary stenosis.
We're now seeing five different specialists for various things. In receiving all of this news I was pretty discouraged, especially on Monday. It's like going to the dentist for a check up and finding that you have cavities, need a root canal and crown, and need other teeth pulled. It's discouraging and that's the best word to describe it. Simply discouraging. I'm still optimistic and hopeful that everything will be ok but it's still very hard at the same time.