Friday, January 27, 2012

Life Lessons

Lily is eating better. I found out she loves avocado. I found some tortilla with very low carbs and who doesn’t love a cheese quesadilla? She likes a cauliflower mixture with cream and chesses that I think tastes like mashed potatoes. So I am feeling better about her getting more food in. Not happy that she is getting no relief on the seizures. This morning I had to wake her for school and I just knew I didn’t want to do that because of course that sent her straight into a seizure. But after it she ate and went to school happily so while it sucked, she is so used to them it is just part of her life. I am told to be patient. 9 years of being patient. Guess we’ll just continue being “patient”.
Andrew has been gone this week to South Dakota and I have been holding down the fort. Parenting is just not the same with only one adult. I give so many props to single moms, military moms, and moms with husbands who work out of town all the time. It is hard work! And not just missing the help with the kids, it is someone to talk to at the end of the day in bed. Someone to say “man what a day” or to giggle with about something silly the kids said or did. I am not looking forward to tomorrow it is going to be a hectic day Saturday. I am looking forward to Monday when he finally makes his way back.
I had to spend my morning at the court proving I do have insurance and paying $250 for a ticket I cannot attend traffic school for because I already been there done that just a few months ago. And it is my fault. I can’t blame the police officer. I can’t blame anyone but myself. I’d like to blame my overwhelmed brain, but that’s like a drunk blaming it on the alcohol. I have so many other ideas of what to spend $250 on. It just made my gut sick. BUT I have to say, I have gotten pulled over at least 6 times in the past 10 years and never gotten a ticket, I always drive too fast. While I do think I am a “cautious speeder”, but maybe that is a little like a “responsible drunk”, all those warnings were making me feel invincible. I mean I was pulled over at least 3 times in the past 2 years alone. I shouldn’t be driving so fast. I need to be reprimanded and believe me having to write a check for $250 made me want to vomit. But I bet you one thing; you won’t see me with another speeding ticket. At least not until I can attend traffic school again, I kid.
This day made me realize how much this felt like being a child and being held responsible for my actions. It sucked, I was mad at the cop (not his fault), annoyed with the court clerk who told me I had to come back to see the judge (not her fault), annoyed that I couldn’t smile my way to a lower fine with the judge (not his fault). Mad at my smile that seems to not be working like it used to? Ok maybe. But I pouted a bit and got over it and it left a huge imprint on taking responsibility for my actions. I realize with my kids it is the same way. Warnings are nice, they let you sigh in relief, but they also don’t teach you much. This was a great learning lesson for me today. And if life is anything, it is all about tests. Some tests we pass, some we fail and have to retake again. I am thankful for a gracious and merciful teacher who hands me the test and says this time you’ll do great.
Things are crazy, things are hectic, and things don’t go the way I want them to, especially as of right now. I have about 10 things I’d like to just change with a snap of my fingers, but that won’t happen so what I am going to do is keep moving forward. Keep trying to pass my tests and keep learning from my mistakes. I figure if I keep up this attitude by 100 I will be perfect.

Tuesday, January 24, 2012

Seizures, diets, new bed .. Oh my!

Seizures are the devil. I hate them. Lily is on 4 anti seizure meds. 4. Have you ever read the labels on anti seizure meds? Ever listen to a commercial talking about a medication for foot fungus and hear the side effects and figure you'd rather just have foot fungus? Yeah it's like that. We're no stranger to AED's, we're no stranger to lots of them, but 4. That's just dumb. Plain ole dumb. But you'd think, well with 4 AED's the child couldn't possibly have seizures, right? Well that is where you my friend would be wrong. Lily still does in deed have seizures and wanna hear something else on top of it all? Lily got put on a modified atkins diet. This means hardly any carbs, tons of fat and no sugar. Oh did you know that already by the no carb thing? Well things were starting out ok last weekend, then by Monday she took a turn south. Started refusing everything. Everything. She is getting keto-cal, which she actually loves (a formula for kids on keto diet, like her diet but even more restrictive), she likes this smoothie I make that is a convert of a smoothie I drink every morning, a combo of heavy cream, water, ice, low carb diabetic yogurt, peanut butter and a bunch of spinach, she likes that. And she likes a yogurt whipped cream combo and this is literally only whipped cream with a touch of sweet n low and don't even get me started on my kick of I hate all things unnatural, especially with fake sugars. I had a waitress tell me Lily should not have a diet soda because it contains aspertine. Thanks lady. Appreciate that little nugget. So we are on week 2, on week 4 we can more than double her carbs and maybe life will be better but as of right now she is hating life and that makes me hate life. Feeding Lily has always been a time consuming event, but now it is like a marathon event that you keep falling before you reach the finish line, and you will only get the yogurt in and she will spit out that yogurt if you even think of slipping her meds in it. Something we were always able to do with full flavored yogurts/puddings. But maybe this isn't the diets fault, because Lily has on occasions gone on not eating kicks and I am thinking this may be more of one of those events because at a point of desperation I took 1/8 C of her favorite greek honey vanilla yogurt (her allotted amount of carbs for the day), the stuff that tastes like sweet heaven, and tried to get her to eat it and she refused that too. The only protein she is getting is in the smoothie. She drinks, she just doesn't want to eat. I promised myself to give this the full college try, but considering I only went to college for one year and that second semester only ended up being a first aide class after dropping anything that mattered so I guess the old college try may not be to me what others may think of it. To be perfectly honest here, I have always been afraid of the day Lily stops eating. It happens a lot with kids like Lily, and I never want that to happen, but if I had a button to put her meds in??? Man life would be a whole lot different. I can't believe I even wished that. If you have known me these last 9 years, you know I pride myself on no button for Lily. Many kids like Lily and in better shape than Lily have buttons. Lily has always eaten like a champ so it really sucks that I am saying this. Meds never used to be an issue. I am being cleaver and figuring it out how to get them in, but it is hard. And there were days when I don't think she got any and no wonder her seizures are a mess. The mom in me is ready to give her a carb hog day and let her go wild and see if she starts eating again, but the stubborn in me says we've made it this far we must go on. I'd really like someone other than myself in my head to argue with, but then I imagine I'd have a whole nother world of issues to deal with.
So right now Lily and I battle each meal. It sucks. I don't want her to have brain surgery yet she is on 4 meds that do nothing and a diet that seems to do nothing and has a neuro that seems to think surgery will do something. I am a mama that wants someone to write the play book and I read it. Preferably available on
Lily did her get new bed. That is an awesome thing. I'd love to share a picture, but life isn't that easy with out your camera. I can't post pictures on the blog of what I took with the ipad. I know, right? A sphincter says what?
But I can say one piece of positive news, I apparently was carrying a huge load on my back before this new bed came. That first night, after we said our prayers and I tucked her safely in, I slept a whole different sleep that night and could honestly and literally say I felt lighter.
Man, I can't imagine how I'd walk if we found some way to get these seizures back under some control. I'm not asking them to go away completely, I already know that is not a hill we can climb, 9 years of evidence shows this truth, but to be back where I don't have to watch her go stiff, hit her body on something near by, go red, stop breathing for moments of time, maybe that would make my steps feel like air. And who cares about me and my walking on air, what about Lily? I bet her nights would be a whole lot different without waking to seizures and sleeping to seizures. My poor precious girl. We need to find relief.
Ahhhhhhhhhhhhhhh the sweet relief of verbal diarrhea. I feel a little better. How about you?

Sunday, January 22, 2012


"Too broad" my friend Codi says to me on New Years Eve as I tell her my resolution. But it was way too late into the night to really have any sort of meaningful conversation with me, I am sure at the time I thought it was meaningful, but by the next day it was lost in a huge headache. "Too broad" was right though I mean I said I wanted to live life fuller. I knew what I meant, but that could mean travel the world, leave my family to travel with the Renaissance Festival (a thought that does cross my mind at least once a year), or it could mean to sing and dance while we clean the house. I mean we all want to live a fuller life. We want to be in our lives enjoying each moment, right? Well maybe not those who live in their own filth on Hoarders, but are those people real anyway? But wanting and doing are two totally different things. Like today all I want to do is sit at my laptop and write. It's been too long and I really wanted to commit to writing more, it is what makes me a better person, yet if I am really trying to write and Oli keeps coming up to me to reload his nurf gun telling me he wants to "shoot people" every 5 seconds and it is frustrating me am I not living fully? That is where the line gets blurred. One side if me would see living for myself as locked up in some beach cottage alone probably drinking way too much wine spending my time writing. Yet another side of me, the bigger side of me wants to live for my family so I will continually stop to fill his nurf gun, get up a million times to help him leaving whatever I write to be nothing but crap. Mindless mumbling that goes no where. I drive and I think of things I want to say, want to write yet it just gets lost in my head along with seizure meds and diets and practices and a job and another job and dinner and oh maybe something fun to do with my kids that has nothing to do with any of those other items listed above. Then I go on pinterest and get linked to blogs where these people have it all together. Rules for raising sons. Rules for raising daughters. Rules to be a better person. Rules for passing it forward. All beautiful things. Things I can totally see myself saying/writing if I weren't on overdrive in my real life. So I wonder are these people locking themselves in their room and letting their kids fend for themselves? Or is that my jealous assumption to what most likely is they have the rules figured out and their kids sit and color with each other politely asking each other for the blue and green crayons? And is that yet another judgement to the fact maybe they need less sleep than I and are able to stay awake til 11pm and instead of spending their time rolling their eyes at the real housewives of whatever county knowing full well that the "real" housewives realize that their kids bus driver saw them in the same shirt for 3 days in a row and that is what it looks like to be real. Whatever judgement I place on people who have their act together is all about me and where I feel like I am lacking in my life.
I have so many wants that may actually be needs, but they never make it past the whirlpool going on in my brain, so when I said I want to live my life fuller I meant I want to be in every moment. Yet this moment, the one I want to write in I have a little boy who won't give a two second break to actually think one coherant thought. So here I am thinking whose life am I supposed to live fully? His or mine? Are my dreams set aside when I had kids, let alone 3 of them? Do you put aside your wants for them or do you try to do both? I feel like I am failing miserable on all counts because I want to do it all. So when I say I want to live fuller that is so incredibly broad and something easy to say, but what I want from that statement is a different way of living. I want to play with my kids. I want them to remember a childhood of silly dance parties, edible dinners and a mom and dad that laughed with them. I don't want them to remember me on my laptop ignorning them. But I also want them to be able to look back and read my thoughts on these years. Look back and respect me for working to help our family and understand I worked to make a difference for kids with CDKL5. I have to find a way to do everything at 100% instead of dividing those things into 100%. But the first step is knowing what needs to change, right? Having intentions to do better has to be a great place to start.
Maybe next year I will quit smoking. Which means I have to start smoking this year.

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.

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