This morning started out with a bang. I went into Peanut's room and she was sitting up waiting for me, smiling huge as I walked in her bedroom door. This part is normal, and makes me feel like the luckiest Mom on the planet. Then the smell of poop hit me, LOL. I got her cleaned up and turned around to get a new diaper. When I turned back around, she was stiff as a board. All four limbs stiff and sort of vibrating, and her head was tilted to the left and staring at nothing. In the few seconds that it took me to react, it was over.
I called the neurologist, because our appointment is next week. I asked if we could get in sooner, so we are going tomorrow morning. She'll go to school for two hours and then I'll pick her up. She's had quite a few seizures this week, and the one this morning was a new type.
The only good thing is that it was reinforced in my mind how awesome our neurologist is. I called this morning, they are fitting us in tomorrow morning. They asked if we needed to be seen this afternoon, but Monkey had an appointment. How amazing is that, to be seen so quick? In neurology, in our area at least, it is completely unheard of. I am always so thankful that we found this great Doctor!
I will update tomorrow. We are going to discuss which seizure med we are going to try next. He said we will add something to the Neurontin and Keppra that she already takes. It just reminds me that when she first started having seizures, he explained epilepsy to me. He said that most kids are seizure free on the first or second medication they try. He said it's not until you have to get into "poly-treatments", or using more than one seizure med together, that you start to get concerned. It makes me sick to my stomach to realize that we are there. :(
Anyways, we have to get control over these seizures. And we have to do it now, before the weather gets hotter and stays hot. And we have to do it before Monday, when I am taking Peanut to Disneyland for the FIRST time. ;) We are meeting up with Lacey and Jaxson again, lucky us!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
6 comments:
Praying the appointment goes well and that your awesome doctor is able to find the right med combo to get her seizures under control! I despise seizures!
Hang in there! I'll be thinking of you guys! Have fun at Disney with Jax's family! Love and Hugs!!!
Good luck today. I hope they are able to figure things out. I'm jealous you guys are going to Disney land!!! Have FUN! :)
I have some bad news! I'm not coming down to California this weekend. I've been having second thoughts for a while because we need to save money. then last night my sister called from Oklahoma and she's coming for the weekend and bringing my niece that I haven't even seen yet. Ray is still coming down and bringing Mondo and Carter. they are going to Disneyland on Friday if you want to go with them. But me and Jax and Tanner are staying home.
Did you say your passes weren't good at all in June? I know Denise said that hers were good only for the first week, which is when we wil be there!
I hate this for you and Peanut. It has to be heart wrenching to watch her have seizures. I am so glad the neuro was able to get her in so quickly. I am praying for you guys!
I'm totally bummed. Its for the best though if we want to save money! Are you getting her a one day pass or season pass?
That is scary. I hope you guys can this figured out soon!! Poor sweet girl!
Oh and we did try a j-tube with slow feeds, didn't do anything but we are thinking of trying a j-tube again just to make sure it still won't work. Who knows.
I'll be praying for sweet peanut.
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