Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

I decided to go ahead with the replacement of the VNS. I think it is one of those “don’t know what you have until it’s gone” knowing that it is off and has been for awhile now I think it helped her with some of the seizures, but also with alertness and hopefully a better “tude”. Lately the little miss is just all over the place, happy then sad. It’s hard to keep up with. And man she cries and loud. And all through the night.
Not sure what we are going to do on our family vacation to Disneyland. I don’t want her waking everyone up all night long, but I also rather not give her the Valum. I swear if she gets it at night she has more cluster seizures the next day. Not sure if that is possible, but I swear it to be true.
I just think maybe it is this enormous growth spurt she is going through right now, it is making her off balance in every way. But seriously if she is this moody at almost 7, I cannot wait for 13.
She still has a LOT of myoclonic jerks and they really make her upset. I don’t know what helps those. It’s so annoying we stop the grand mals that ruined her day, but now she jerks and drops all day long which piss her off which in turn of course ruins her day.
Have I said it today? I HATE SEIZURES!
On to the others, Andi Jane had 3 fillings the other day and did really well. My wallet is empty but she did well and I don’t think she will be afraid of the dentist the rest of her life, more like the opposite. I think they shouldn’t make fillings, that fun. When I tell her she will get cavities if she doesn’t brush she says that’s ok that was fun. She was pretty goofy on the laughing gas. She told the dentist she had been waiting for that appointment all year long. They said she should get out more often. LOL.
Oliver is good. Not only speed crawling, but pulling up on things. AND babbling. Thank God! I wouldn’t care if he didn’t crawl until a year as long as his speech were on target. Speech is just so huge and it is the hardest part of dealing with Lily, the lack of communication, so to hear those so important first steps to language, sure takes a huge load off my shoulders. Thank God!

One thought on “Decisions

  1. Dawn says:

    I can definitely sympathize with you on the decision to replace the VNS or not. My daughter Taylor had one of the first VNS operations 9 years ago. It never did stop her seizures and we just assumed it didn't really work.However, when the battery died 2 years ago, we got a chance to see that the VNS actually was stopping some seizures. You are right, we didn't know what the VNS did until it wasn't doing it anymore.I think maybe I had put all my hopes in the VNS as the miracle cure for Taylor's seizures and it just didn't work out that way.Good luck.DawnMom to Taylor Marie, Trisomy 9p & Lennox-Gastaut seizure disorder.

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