We had a very encouraging neuro appointment last week. I really love this new neuro, she is so cool and really cares about Lily.
We decided to take her off the diet. She said her main goal is to give Lily the best quality of life and if foods are what she enjoys and the diet wasn’t helping the seizures than take her off. We gladly obliged.
We discussed changing some meds up. Trying some other ideas and giving these changes three months. Then she wants to meet again and decide from there to go through with the completion of the corpus callosotomy.
I am praying in three months we show up and say, she is doing amazing! No surgery needed. We are all aware of the fact seizure free is not really a possibility. But we need to stop the tonic clonics as those are the most dangerous seizures and she is having them daily. They worsen her life quality by wiping her out. They are also the most dangerous to her health.
I know when Lily was much younger, pre diagnosis; we were under this misconception (given to us by medial professionals) that if we got the seizures under control she would be able to develop. But even when she has had better seizure control she never made much progress. She was much happier for sure, but didn’t all of a sudden start crawling or walking. As her mom and I know I can speak for Andrew as well, those aren’t the things we desire from her anymore. What we want from her is to know she is happy. That she feels well. That she isn’t wiped out from seizures, wiped out from a lack of sleep, wiped out from leg cramps at night, wiped out from being on 4 heavy drugs. We want nothing from her actually. We want to give to her a good life. Give her a happy life. We want to know that the life she has lived has been a good one. And we are doing what we can to acquire that. Lately we haven’t seen much joy for Lily. She is on 4 meds. Still seizes every day. Her sleep is constantly interrupted. Her legs cramp up at night. She sleeps during the day. We just don’t feel that we are giving her the best we can so we are starting changes.
It’s gonna be slow weaning meds. Adding. Tweaking. Changing. Trying something different.
But our goal is comfort for Lily. Happiness for her. We’d love to take her somewhere and have her stay awake. Be alert. Enjoy her family. It isn’t like that hasn’t always been our goal, but I think we spent a long time wanting to make her better so she can do things that made us happy. What a selfish way to think.
We will do what we can to make her happy. Expectations gone. Acceptance once again. Breath in. Breath out. Ahhhhhhhhhhhhhhhhhhhhhhh it feels good.
Pray for us as we go through the painful process of weaning meds. Things will be much worse before they can get better.
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