Thursday, March 24, 2011

Need to getaway?

I posted on FB that I want a vacation and everyone seemed to 2nd, 3rd, 4th etc the idea. I see that I am not alone, when you have spring break for 2 whole weeks and you go nowhere then look on the social media sites and see people sharing vaca pictures it kinda bums you out. Is there a new word for that condition? I'm sure the Today show will explain this soon... do you suffer from social media vacation envy depression....
Whatever anyway, I so desire my family on the beach. Is that so much to ask? Actually right now, yeah. It is :(
Lily is just having ridiculous seizures. Yesterday I took the kids to open gym (2x in a week) and I was having Lily sit on the mats with her back against my legs while I stood and boom she dropped on her face and went into a full tonic clonic seizure. Then she was exhausted and fell asleep. Then she had another that evening at home on the floor. And that is just an addition to the myoclonic clusters she is having and of course the atonic drops that just come out of no where.
I'm so sick of seizures. I hate them. I can't get an answer from neuro surgeon if insurance has approved the VNS implant. I don't want to call and have him mess with the meds again. It never gets us anywhere. I hate how intense her seizures are and how intractable they are. I can take everything, the wheelchair, the diapering her, the lack of communication, everything, but why must we have to watch her body suffer all day long from these stupid seizures. Yes Andi Jane I said stupid, I know it is a bad word, but I'd like to say so much worse.
Oliver has his hearing test tomorrow. I'm nearly positive he can hear well, I was whispering behind him and he was grumpy and he'd say "NO!" when I whispered to him. He is grumpy often. But we have to have the hearing test if we want a speech eval. And I think he is ready for a speech eval. He seems to be picking up more words, but compared to where he *should* be and where he is is a huge difference. I know better than most about the *should's* and that is why we've gone this long without any concern from me, but now it is time to be proactive. When he can communicate with us all our lives will be better. I know he wants to say more than mine and no. Right? Well he is 2 maybe that is all he wants to say.
I'll update tomorrow. Someone send me some sunshine we can implant up my hiney I think I need it.

4 comments:

~lisa~ said...

OMGoodness...i do the same exact thing!! check FB & then see that the entire world is out & about having FUN while i'm stuck at home. my daughter, jocelyn, has Angelman Syndrome, so i know the feeling of isolation. jocelyn also has seizures, not near as bad as what you've described, but she's been having seizures since she was almost 3...she just turned 7 last month. anyways, just wanted you to know that you're not the only mom out there wishing you could do some of the stuff you see on FB, etc. i myself am quite guilty :)

Dawn said...

I don't have any sunshine to send but instead sending lots of happy thoughts your way and hoping the seizures let up asap! Rett Syndrome sucks.

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Colleen said...

I am so sorry that the seizures are being so stupid. We are having 'episodes' that are not seizures, but look just like it and she stops breathing at the end, not fun. It keeps me stuck here, which happens to be a beach (yet a cold Nor. CA one) and not traveling for Easter to be with all of our family in AZ for spring break. If I find a way to implant sunshine, you will be among the first to know!

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