We are weening Taylor off of the ACTH shots and moving on to Vigabatrin, an oral anti-epileptic drug. ACTH seems to have knocked out a fair portion of his seizures, but we're 4+ weeks into the treatment and still seeing at least 8 a day. Many children have found success with Vigabatrin when ACTH didn't work for them initially. The side effects can be more severe, but we're praying for the best.
The last week has been a bit of a roller coaster with Taylor's moods. He has definitely become more irritable and his appetite has become voracious. His new game is to demand a full meal at 1am.....and then another at 5am....definitely reverting back to his newborn days. Mom, Dad & Nina have all learned to make a bottle while sleepwalking. :)
Here's a picture of our chunky monkey taking a little snooze:
Yes...bad hair day.
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