Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

I got the appointment for the consult with Neuro Surgeon… March 23rd. Gahhhh!
I called Neuro and said hey this doesn’t really work with the amount of seizures she is having. They sent an email to see if they could get us in any sooner and asked to put us on cancellation list, but as of now the appointment still stands. So annoying. Consult will be for 2 minutes and then we will have to schedule the surgery for I’m sure weeks to a month out from there. Neuro told me he was sure I could teach the Neuro Surgeon a thing or two, not sure if that was a compliment to all my brain knowledge or a jab at a young not too bright neuro surgeon, is that even possible, well with the exception of Derick Sheppards sister on Private Practice, are we really supposed to believe she is a neuro surgeon?! Either way I am not too thrilled.
I have a massive headache, Lily was up from 3am on last night. She was just doing her loud Lily talk and on and off crying with nothing wrong with her. It is odd there can literally be a brawl outside involving police sirens and ambulances and our entire household sleeps through it, yet Lily talks all hours of the night and I am wide awake. Anyway she is still having one big seizure a day almost on the 4pm hour every day. In addition to all the jerks and drops. It is odd and makes her crabby. We haven’t seen any changes in her gluten free diet.
She still in constipated. She is now on antibiotics for a runny nose that is just green and non stop since mid January.
Sigh…. if anyone finds my sense of humor can you send it to me? I will pay for shipping. Even willing to pay a reward.
My last posts have just sucked. I know. My writings suck. My attitude sucks. Working on it. Hang with me.

2 thoughts on “Neuro Surgeon

  1. Anonymous says:

    My 9 year old has CDKL5. She has at least one night a week or so that she doesn't sleep. She is up all night rocking her bed very over stimulated. Any advice on sleep meds?

  2. Kim says:

    have you tried melatonin? our dr rx valum as needed and we have the klonopin. sometimes just a benadryl will help as well. are you on our cdkl5 yahoo group? there is a great amount of support over there and lots of help with questions just like this. email me knothdurft at gmail .com

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