Zander's History from his Mommy, Jamie

Zander joined our family on April 6th, 2009 weighing in at a whoppin 6 lbs 12 oz. He was a dream baby. He didn't fuss and slept great. About 6 month ago, we noted he wasn't meeting the "standard milestones" He hadn't rolled over, couldn't sit up, etc. He was also getting a lot of upper respiratory infections and low grade fevers. We also noted he had a "lazy eye", and it would come and go. It was worse when he was tired or sick. Our primary doctor was great about getting us into different doctors. She had us see an eye doctor, who had noticed Zander's history. He had asked if "Myasthenia Gravis" was ever mentioned. I said no. He had explained that he had just a paper/book on the eye portion to MG, and that Zander had a lot of the characteris​tics of this disorder. He referred us to a neurologist.​ She too was concerned about it. Zander underwent a long day of testing. He had tubes placed in his ears, muscle stimulation (EMG), and bronchoscop​y. The EMG was essentially normal. The neurologist referred us to a muscle specialist. Dr. Selcen. (She's fantastic) She to was afraid that he had congenital myasthenia syndrome. She started him on a medication called "Mestinon". Within 3 days of the medicine he was rolling over. Wow. We were excited. Fast forward to NOW...3/31/​10. Zander was taken off of it for a short period of time, and began to backslide (aspirating​, decreased movements, lazy eye). On Friday 3/26/10 He was started back on the mestinon. He is finally back to moving or "jumping bean". He bounces on your leg or in his exersaucer like a jumping bean. He gets PT/OT weekly at home and/ or at the clinic. It was decided that Zander's needs are increasing. Giving him a bath is very difficult because he is unable to support himself at all (did I mention he's 29 lbs). So he's an armful as well. It was decided that he should be fitted for a special wheelchair/​seat that reclines & sits up in order to better help him and me. We will see the PT doctor today to confirm his needs. He's also getting a shower/tub chair. I just want what's best for the little man. He has become the heartthrob of everyone at therapy because he smiles at everyone. Zander turned 1 on Tuesday, April 6th. I hope this year is a good year, and he makes huge improvement​s.