Thursday, January 12, 2012

So I'm taking Andi Jane to a chiropractor. He's a pretty cool dude and works super awesome with kids. I'm taking her for a whole battery of things, but mostly bedwetting. Please don't tell her I told you. I have 3 kids ages 9, almost 7 and nearly 3 and usually one morning I am washing sheets for leaking though pull ups/diapers whatever. It sucks!!!!! I'm so afraid Oliver will be on the same road as Andi. People say oh they're ready for potty training when they are dry at night. Well with that logic Andi would still not be potty trained. And Oli does fairly well in the day with me but by no means dry at night. I don't send them to bed with drinks. Andi gets a sip of water and Oli doesn't even get that. No sippy in bed, nada. Lily goes to bed with 2 diapers and still soaks through. But that could have something to do with the quality of the state given diapers. Not complaining just saying. After Andi's second appointment she went a whole week dry at night. I thought we found the cure only to have her only dry 2 x and not consistent in 2 weeks. I don't know.... It isn't cheap nor covered by insurance so I'm praying I didn't waste our money. I am also taking her in hopes to help her with her with focus. She really looses focus and often. Even her most recent report card said she is smart, wonderful, helpful, etc JUST that she struggles maintaining focus. And she has a wonderful teacher who works very well with her so I really take her criticism to heart. We tried the whole medication route and I was unsure about it and when she was on it I knew that clearly wasn't the option for her. Not knocking those who do, it just wasn't for us. So anyway, trying to work with this chiro on some issues. He mentioned removing milk and wheat from her diet. Ha. Oh man. Andi was in tears on the way home last night, thinking about no milk. I told her it was worth a try for a week, but I'm gonna have to search hard for replacements. She is such a cheese and milk kid.
I'm gonna start Lily on the modified atkins diet soon and need to go looking for replacements for her as well. Since she is an oatmeal, yogurt, pudding kind of kid I'm not looking forward to it. But since seizures haunt her no matter what we do we are coming to an end of the road for treatment options. Neuro is pushing surgery as next resort. Andrew wants me to ask about some medical marijuana we saw on weed wars. I
don't even know where to start with that. What we saw on the show was a kid with really bad epilepsy, wheelchair bound etc and he took a
kind that doesn't have what gets you high but at the end of the show he went 4 days without a seizure. But I don't know what happened after
that. Lily is on 4 nasty meds, I am not against that sort of treatment if it actually had some data behind it, God knows a natural substance
has to be better than what she is taking now. But this is all controversial and I don't even know anything about it. The show makes me mad
and I have a hard time taking it seriously when the checkout kid eats an edible while on break and can't even ring up customers afterwards.
That sort of discredits it all to me, but the part with the epileptic kid did intrigue me. So anyway that is where we are at. Lily had a big seizure
this am. She had been doing great after we increased Zonegran and I think that med has been very helpful but they always seem to come
back. They've been working their way back since last week and now they are back on a daily basis. Suckity.
Well aware iPad that is not a word.
Speaking of iPad. Lily got some gift cards for iTunes for Christmas and we got some great apps. She seems to be using the app that looks
like and works like a switch the most. It is very basic, we got other more in depth ones, but for right now this one seems to be working pretty
great. I can't believe the way technology has changed. A communication device can go for thousands and now thanks to iPad it can be much
cheaper AND I don't think mommies can check their email, play words with friends and update their facebook status on a regular old
communication device :) cheers.
And last update is on Lily's bed. They were supposed to come yesterday. Supposed to. I spent my morning taking down Lily's bed. Cleaning
out her room, throwing away old toys (which is incredibly hard to do after Toy Story, you can't help but think oh my gosh what if she really is
alive and I am throwing her away), I had her room looking like a big clean open space and ring ring.... We can't come til Friday.
Ooookkkaaaaay.... Hmmmm... Well now she has to sleep on the floor. Sorry ma'am is what I heard on the other line. Gahhh! Poor girl, she
seemed fine, I had a ton of blankets down for her, but I hate for her to have to sleep on the floor. I'd update with pictures but for some
reason I can't upload pictures from the iPad to here (not that they are good pictures anyway) and with a heavy heart I have to report that my
Nikon is now resting in peace. After many real tears, no joke, I really don't have my Nikon anymore. It was in Lily's backpack and someone
took the kids for a walk, threw a water bottle in the same backpack for the kids. Water bottle leaked and I came home and found all this. It
was like a death in the family. But there was nothing I could do. No one to yell at. It was a total accident. A total ugly heart breaking
accident. I'm still trying to find the beautiful in that ugly. I guess being able to not flip out has to be some sort of credit due to myself. Our
laptop is almost on her way out as well so I don't even have anywhere to load my photos right now so I guess it is just something I will be
without until I can save a little moolah. Right now our savings is going towards a trip to New Orleans at the end of June (if we can get help with the kids, unless I am going solo to the Rett Syndrome family conference that is letting our CDKL5 family have a conference within
theirs!) and we really want a get away with the kids this summer. It's been way too long since we've been to the beach so that is my goal for
2012. Family vaca, cdkl5 conference, new camera and a MacBook. In hear if you visualize things happening they will so that is how I see
our 2012 unfolding.
Alright enough from me for today. Keep Lily in your prayers. We'd really like to see some changes in seizures this new year.

1 comment:

Jennifer said...

Have you tried Goodnites on all 3 kids? They absorb much more than pull ups do. I hope things get better in the seizure front! I'll be praying!

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