Today was Karsen's occupational therapy, the time it is every week. It's always hard on him, it's hard work, but today was particularly more hard than usual. Since starting Karsen on the new medicine, he's been completely taken over. It breaks my heart, I hate to see what the side affects of the medicine are doing. He's been completely cranky, and has no drive to do anything. Therapy was pretty hard. Imagine a full hour trying to get a baby to want to do something he doesn't want to do and in the process dealing with the screaming, and fighting. It's 100% apparent the drugs have completely taken him over. I would like my happy baby, that smiles at everything, back please. I can't wait to get him off of these drugs. We still haven't seen a change in his seizures yet, but there is still time for the meds to work.
In the mean time, I've been submerged in surgery research, trying to find other cases like ours. The type of seizures he has in correlation to the EEG are rare, it's even more rare to find a baby that has hemiplegia on top of it, and then adding the surgery on top of that. I've found two people who's stories were somewhat similar, but it's still like comparing apples to oranges, both a fruit but so very different. I feel at a stand still. Like any situation, waiting is the hardest part. I want answers, I want no seizures, I want my happy baby back, I want a break, I want to know the worst is over. I'm ready to move forward, and on with our lives. I fear this is only the beginning.
Karsen's favorite place to be
My email is sarahduncan123@hotmail.com I am Rubys mom and would love to share our story with you and offer any advice and encouragement. Our experience with LPCH was great and you are in great hands. Email me any time
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