We had an appointment with Noah's neurologist today to discuss the events of the scariest night ever (when Noah had the grand mal seizsure and went to the hospital in an ambulance, read this for a total recap) and the subsequent myoclonic seizures he has been having the past few days.
Noah's levels were a little bit off so we made adjustments to his medication. The Dr. is hopeful that will get Noah back to where he was before all of this started. If the seizures continue after a little bit on the new doses, then we will do an EEG and see if we can figure out what is going on.
After having one grand mal seizure, the chances of him having another are higher so we now have a syringe that we can use in case Noah has a grand mal seizure lasting longer than 3 minutes. We also have a "wafer" pill that dissolves on Noah's tongue and is fast acting that is for us to give him when he is having myoclonic seizures. While I am glad that we have these things in the case of an emergency, it's scary to know that we need them.
I'll end with a cute story..... As you may know, Noah is mostly non verbal. He says things like Momma, Daddy, Nana, and Granddaddy but that's about the extent of it. He often tries to talk but what comes out is unrecognizable. A couple of times lately, Noah has blurted out things that are real, recognizable words! Today, when the lab technician was getting blood to check his levels, she was having trouble finding a vein. It was taking awhile. Finally she announced that she had found one. Noah looks at her and says "It's about time!" There was another lab tech assisting and he looks at me and says "Did he just tell her it's about time?" I responded that yep, I think he did just say that! We all busted out laughing. Love that one of the few things he's ever verbally said is riddled with teenage attitude!
Ohmigosh! Can't believe Nono said that! That's so funny! Not so funny, however, is the reason he had to have his blood drawn in the first place. :-( Here's hoping that you NEVER ever have to use the emergency medications. Yuck.
ReplyDeleteColey....you are amazing!! I know it's been a frightening few days for you but Thank God He was watching over you all & I'm so glad you have some things on hand to utilize should you ever have to use them!! (God forbid) Your mantra is a good one & I'm sure a comfort when these kinds of things come up to smack you in the face!! I pray for you and Noah & J that God will hold you all in His loving hands & grant wisdom to the medical workers & researchers who work with Noah that maybe someday there will be some drastic improvements for him to make his life (and yours) easier & more comfortable. :):) God Bless You....Noah is so fortunate to have you for a Mommy! :) :) Much love to you, dear Coley
ReplyDeleteLove his response - very appropriate!!
ReplyDeletePraying for you guys. Sounds like he had had enough!! I love when they do things that are age appropriate.
ReplyDeleteLove my boy !!! Praying this is beginning of a change and he will improve with talking what an awesome Gift from God this would be !!!
ReplyDeletelove you
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