Caleb is not doing so hot, prayers please!
So this last week as been very difficult. He has had two episodes where he has stopped breathing long enough to turn blue. Once while awake and the other while asleep. he is having multiple seizures every day and this is after we increased his meds two weeks ago. He had a bad convulsive seizure last night that woke him up. He woke up irritable, and I thought he just did not like the style of his new cannula, so tried to rearrange things and he settled a little, then he had a high pitched scream and yelled out No No! and went into a full body convulsive seizure. He started experiencing, or at least started to be able to express that he is experiencing auras before his big seizures, which is what I think was happening and he is scared. Still waiting for a call back from his neuro. The nurse felt it was an urgent message, yet I still have not heard. We are worried that his condition is worsening and afraid of what more he is going to have to go through in order to figure this out. He and his twin will be 2 on Thursday. I just hope he can have a happy birthday without any issues. Thanks for listening,