I know, can we get a post of happiness? I will have one soon, whether I have to pull the happiness out of my assskkkkkmenomorequestions. ;)
So Peanut is still having seizures, even one the increased dosage of Keppra together with her Neurontin. I just shot of an email to the neurologist to let him know. He mentioned adding in Depakote, but our Metabolicist says no way. Evidently Depakote is NOT good with a metabolic disorder, as it affects the body's metabolism in general. So I emailed the neurologist that, and asked him what our next option is.
I hate seizures. I hate that she has them and we probably don't even notice most of them. When we see them, they are so short. Head drops that last seconds. The head drops down, her arms go up a bit, and then back to normal. Staring spells that last 5-10 seconds. So if we notice them and they're this quick, surely we miss some. When I'm driving, I can't see her. When she's sleeping, when she's on the school bus. The bus driver has seen a few of them, mostly bigger ones. I know these short ones aren't putting her in immediate danger, but it still breaks my heart.
I hope the neurologist has a good suggestion!
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:
Sorry I have fallen off your blog radar for a while, don't know what was up with that!
I am sorry she is still having seizures despite the increased meds. I hate seizures too, for all my little friends and their parents who have to watch them. Breaks my heart. I hope and pray you can find the answer soon.
I hope Monkey is doing better from his surgery. I can imagine it has got to be harder with a young man who understands pain and fear. I'm praying he can stay hydrated and he just gets better and better fast.
Hugs to you Mama, keep your chin up!
I hope they can figure something out for the seizures too!!
I also hope that monkey gets feeling better soon!! They always say it gets worse before it gets better and this seems to be the same pattern that Taveon took. He ended up in the hospital again on the second or third day. So I hope he can keep eating those popsicles at least. I hope he got our card!!
We will be praying for you all!!
so sorry to hear about the seizures.
have they considered the ketogenic diet? It worked wonderfully for Junior for several years. He now uses depakote and Lamictal to control his seizures.
I'm so sorry! I despise seizures as well! And, I'm so sad that Peanut has to suffer from them! Praying they can be controlled soon! Love and Hugs!!!
Hi there, if Ray gets the job with the company he's already with it would be in fontana. We don't really want to live there, so we'll live as far away as we can without causes him to have to drive too far. I would rather see him get the job with Riverside, but we'll take what we can get right now!
Ok I just mapquested fontana to corona and its only 26 minutes, so I think we'll stay in corona!
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