The good - We are slowly weaning her off of phenobarbital which is one of her 3 seizure meds. It also makes her really sleepy so I'm hoping to see her more alert as those levels in her blood go down. So far, she hasn't had any seizures as a result of this and it's been 4 weeks at the reduced dose (33% less med than before). She had a fever spike and a few odd looking up moments during that spike, but not enough for me to call it an all out seizure AND if it were a seizure, it would be a febrile seizure and not likely caused by phenobarb. She did have a few withdrawal symptoms at first (moody, muscle twitching, and the crying, OMG, the crying!) but we worked through it. I'm pretty hopeful that we can ditch this med and move on with our lives. I don't want to jinx it, but we are 5 months seizure free!!! Here's Gesina at her papa's softball game.
The bad - Gesina had the breathing issues again which put us back into the hospital for a few days. She now has to have breathing treatments (5 a day and she doesn't like it) for the remainder of the spring "asthma" season. You have to be 2 years old to be considered asthmatic but Gesina is well on her way to that diagnosis. I'm not sure how to interpret that as she has spastic quad cerebral palsy, she won't be a terribly active kid. So how would asthma be triggered? But I'm sure some doctor will explain it all to me when we get there. She also got a cold (with a fever that spiked to 104 F in 10 minutes) that turned into pneumonia and she is currently fighting that. She is on 8 medications and alternating acetaminophen/Midol for fever or teething pain. Traditionally, I've always been a minimalist with medicine. I don't take it unless I have to and I get off of it as soon as possible. But with Gesina, well that's not a philosophy I can afford to take. When Gesina is sick, she demands to be held 24/7. I know people THINK they know what that means, but you really have no idea. If I set her down to get her meds, she screams. I can't get food for me (I eat ensure to avoid putting her down), she eats pediasure via tube because she is too uncomfortable to eat solids right now. I LOVE the cuddles, but also not-so-much love it... I had to buy a baby carrier so I can walk and use my arms because it has been a really long 2 weeks. She is getting better but these sick days come out of nowhere and pretty much demolish any plans I may have for the day/days ahead. Here she is, exhausted after a day of crying:
The "ugly" - I was so excited to have Gesina try chocolate chip cookies, here she is with her first bite!
She didn't like it... I'm left shaking my head wondering how, exactly, she could be my child. More cookies for me I guess. And here she is recovering from pneumonia. She would cry and cry and not go to sleep... until I went to feed her. Suddenly, she "fell" asleep. She is so sneaky!
