Tuesday, February 23, 2010

Cut throat

Last night we were around the table for dinner and Andi, as usual, was bouncing off the walls, reaching too far and knocking things over. Andrew as usual threatens a ridiculous threat that he won't follow through with, I hope, and tells her if she reaches instead of asks again he will cut her fingers off. I decide to play along and tell her that daddy used to do that for a living. If kids were bad the daddy's would call daddy in to cut the kids fingers off. She of course didn't bite and said, "what's their names?" I said "well I know about Billy whose son Jacob wouldn't listen so daddy went to their house and cut his fingers off". Then I added in that was how daddy used to made his money, but he quit doing it because he didn't want to be mean anymore.
Andi sits for a minute absorbing this and says "you should do it again dad", "why" I ask astonished, "so you can make more money and I can go to Ayden's (her cousins) birthday party in South Dakota."
Wow. I knew she wanted to go to his birthday party, and I told her we didn't have enough money to fly there for it, what I didn't know was she'd risk little children's fingers to get there. Who is this child? She couldn't possibly have come from me.

**note to public** no fingers would ever be cut off. No CPS calls necessary.

Monday, February 22, 2010

Make a Wish

We make wishes off fallen eyelashes. I know this isn't a new revelation, I did it as a kid and I am passing it onto my kids. Andi just loves it when it happens and sometimes I catch her tugging on her eyelashes trying to get them to come out, I let her know they have to fall naturally.
This morning as I fed Lily her breakfast I saw on her cheek a fallen eyelash. I told Lily about it and asked if she wanted to make a wish. Like often I felt like my words fell upon deaf ears. I called Andi Jane into the room and said "Lily has a fallen eyelash, want to make a wish for her?" I told her that her wish has to be for Lily and she was so excited to do it. She blows and looks at me with her big brown eyes and says, "I can't tell you what I wished for, but Lily would love it" (she says love very dramatically). I can only imagine she wished for Lily to get a new toy that Andi would adopt, or pizza for dinner, but maybe it was something a little deeper. I ask Lily, "did you hear that? Andi made a wish for you. What would you wish for Lily?" I know the question is for me and my mind races. What would Lily wish for? Would she wish for something big, like a cure for CDKL5? To walk? Talk? Or would her wish be smaller? Maybe she'd wish that I could know her cries. Would she wish for me to understand her better? Meet her needs quicker? I have such a hard time when she goes through these crying spells. I just don't know what she wants and what she needs. I just wish I knew. I guess we can always wait for my next fallen eyelash.

Sunday, February 21, 2010

Crabby Pants

Lily continues to fuss for us, it is typically around 4-6pm. She has lots of myoclonics and atonic drops during that time and then she has a larger tonic clonic, then more fussing then she relaxes. I try to stop it with a small dose of klonopin but that rarely helps. I don't know what her deal is and why it is happening like it is. She is also refusing to eat much and she is really struggling with going potty. She constantly needs help with medication and it is so frustrating that her body won't just do what it is supposed to do. I am making her go daily to try to prevent her from getting tummy aches, but you just never know what is going on with her. She's just not herself lately. She is really fussy right now as I write and it is 2pm on a Sunday afternoon. Not sure what she wants or needs and really wish I knew. She loves going outside but it's been raining all day so maybe being cooped up is bugging her? Who knows?
Andrew went up on a snowboarding trip with his friends this weekend and it is a lot of work to have all three alone without much help. I did use our nurse on Saturday because I had already made plans a month prior and didn't think I was taking any kids with me so at least having someone for her made things a little easier. So anyway, that trip is his birthday gift. And I am so working on a girls trip and soon I hope! It is hard though since Oliver is still nursing and still not sleeping through the night. Sigh. I need to toughen up on him... but he's my last. He's my baby.
Well there are so many things that need to be done. I better get to it. Just wanted to check in, I know it had been awhile.

Tuesday, February 9, 2010

12 mo stats and.... complaining

Oliver is officially a string bean! 20 lbs (14%) and 31" (90%)! I am so used to my big girls it is surprising to me to see how tiny he is. Andrew gets mad when I call him tiny, but he totally is.
His right ear is still not clear! We are going on month 2! We are going to try another antibiotic and go back next week to see if it clears up.
Lily still has a runny nose. It is a full time job wiping her nose. It is exhausting. He says I should try a allergy medicine. I'll see. I think it is time she goes to an allergist again. This runny nose is just seriously ridiculous. It would have to be one of the top words to describe Lily. Pretty, sweet, runny nose.
Oliver's ears are causing a sleepless household and it is making a lot of crabby people. Again... exhausting. He was up 3 times last night.
Andi has a constant cough and her Dr. wants to look at her more in depth next month at her 5 yr check up to see if she could be heading towards asthma. Sigh.
Anyone have any good news for me because I could sure use some. I won't even get into work. A family supported by construction field right now? No good.
Anyone have a good job for me? Can I get paid to do something I enjoy? I'm super inflexible if that helps. Double sigh.
If I get 8 hours of uninterrupted sleep I promise a better update, until then my friends the sky is falling.
Oh tonight I am going to a TAOS seminar (youtube it) I think Lily will be able to walk in that thing, That is good news. Probably dealing with jack ass insurance folks will make it bad news. Again give me 8 hours and I will put a positive spin on that.

Monday, February 1, 2010

First apologize, then complain

I feel like I need to apologize for a part of my post yesterday, I was on such a high from being inspired, having the conversation with that family and just feeling like a completeness with my church family that I feel like I may have been insulting to other people’s religion. Some people may love going to church where they sing out of hymnals and love hearing the scripture read. It was not my intent to be disrespectful any other religion or practices of their religion, I was just very excited about my own. I realized it was like two best friends hanging out and one says I just love my new DD’s I paid $7,000 for they are perfect and I can’t imagine ever being an A cup again. All the while the other best friend is sitting there with her A cup boobs that she has always liked and starts feeling a little insecure. Not my intention to show off my DD’s not at all. If you are happy with your A cup than that is all that matters.
We live in America where we have the freedom to explore whatever spiritual avenue we want to explore and that is a right that I love and honor and please don’t be offended if you like hymn #82.
I feel better now, do you?
Now let me start to complain. At the geneticists urging I went ahead and got Lily the Flu shot, just the regular seasonal flu shot, not H1N1. She hasn’t had it since she was 4 and is fine every year without it. I think the less in her system the better. BUT the geneticists made me feel that if Lily got the flu she could suffer some major complications, death included. Well all I could think about was her getting the flu and dying and I would be blaming myself for not getting her that shot. I would have to live with going against medical advice for the rest of my life. So she got the shot on Wednesday morning when I took her in for the antibiotics. Wednesday afternoon she started a huge hissy fit that lasted about 2 hours. She does go through spells were she is fussy in the afternoon so I didn’t think much of it. But then she did it Thursday afternoon and Friday as well in Greer Andrew said. Her cold got worse and so she has this thick runny green stuff that just won’t stop and that is still going on today (day 5 on antibiotics). And the real kicker is her seizures are worse than ever. Like her atonic drops have been getting worse, but this morning she had a full fledge tonic clonic that made her so sad (as well as me) and then so tired. And then she had to still do horse therapy, OT and music. Poor kid! I did take her to school afterwards because she seemed to be in better spirits, but of course told them to call for any reason if I need to get her. So is this all related to the flu shot or am I crazy? I forgot to mention her lack of sleep. She didn’t sleep but maybe 5 hours each night in Greer, much to Andrew’ dismay, and last night I heard her from 4 am on. So the lack of sleep could have triggered the seizure, but then why the lack of sleep? What the holy crap is going on? I pray I didn’t do the wrong thing giving her the flu shot. I am just so tired of having to know everything and I really know nothing. It is so hard being a mom period, and then you have to add all this gooey layers that complicate everything. Andi got the nasal mist (flu shot) on Wednesday and I am guessing that is why she has the cold symptoms, low grade fever and cough but this was her first flu shot ever in her life, but she gets sick so often that I decided to have her get it. We will see if it is all worth it. I don’t get it myself and am fine every year. I just got scared with the whole Lily could die from the flu. Call me crazy but use that word and Kimmy gets a bit freaked.
I have a call in with neuro and am anxiously waiting for his call. I am not all that patient and will start messing with her meds myself if I don’t hear from him soon. It’s how I roll.
That is my update for the day. Not sure if this post will cause more problems than my last because I know what immunization talk can stir. Don't cyber yell at me if you think I shouldn’t have gotten her the shot, because she already got it and I am already uneasy about it.
Geeze next post should be about politics, and then I’d have all the hot topics covered in one week.

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