4/23/08

Oh, the drama here over the last few days. Last Thursday, wonderful daughter #2 brought home a letter from school regarding her excessive absences. Of course, my first question was, "What excessive absences?" Come to find out, said daughter has been skipping school here and there. For what? No apparent reason – just to take herself a vacation day or two, or seven. Then, when questions, she ratted out #1 – turns out #1 took herself a vacation day or two herself over the last few weeks. My wonderful husband was relaying all this info over the phone to me while I was at work, since he was home with #1 that day for her first day of homebound instruction. I got so very instantly angry, that my first words were, "You better tell those girls to give their hearts to God because their butts are mine!!" What I actually heard him say was, "Your mom is VERY angry." My next words were, "I hope like hell that they are still there when I get home because fur will fly!!" Which again got mistranslated to, "She will speak to you when she calms down." Heh.

The thing is – on the great, grand scheme of life, this wasn't a big deal. On the other hand, though, they lied – they purposefully sneaked out (dressed for school and then waited around the corner until we were gone and came back home. I don't know WHY they thought they wouldn't get caught. But the punishment was swift and severe. I told #2 that she would have to call me from school – a school line - each morning so that the number popped up on my caller ID and I KNEW she was where she was supposed to be. And I told her that the first time she "forgot" to call, I would leave work immediately, drive to school, hunt her down and stay right beside her for the rest of the school day – even cutting up her meat at lunch if need be. And then when she showed disbelief, even saying, "You won't do that," I replied with, "Dare me – just once."

Oh, teenagers – they are wunnerful.

On the epilepsy front, we are nearly through ramping down the Trileptal. At the end of next week, #1 will be on none whatsoever. She is scheduled for an MRI on Friday evening and her pre-admit papers and blood work on Friday mid-day. Just a little over a week away and my baby will be going under for the first surgery. Just yesterday was her 16^th birthday and I had a moment of sentimentality and nostalgia. She left school so quickly that we didn't have time to give her a 16^th birthday party with her friends. And now that the seizure activity has dramatically increased, we can't really do anything right now, either.

My dad had to back out of coming down to stay with the other two children while we are in the hospital because my dad has decided that mom might not be "with-it" enough to stay by herself. However, mom also decided that she didn't want to stay at my house because the bed wasn't comfortable, the chairs weren't comfortable, etc. You name it and she had a reason NOT to be here. Just a couple of weeks ago she decided that she wasn't welcome at my home (not that I ever said that) and wasn't going to come anyway. I'm not sure where she got that info, but it's in her mind that she's not welcome here.

Anywho – that's enough for now. I'll update more as we get closer to surgery.

Latest Update

Wow – it's been a while since I updated. On the seizure front, this past Friday was our last neurology visit before surgery. Her doc decided to begin to wean her off the Trileptal (ramping down about 300mg per week). We decreased her dose beginning on Saturday and on Monday morning right after arriving at school she lost the feeling in her left arm. Her typical aura is numbness and/or tingling on the left arm and leg. This scared her, as she said it happened very suddenly. She called while we were nearly halfway downtown on the way to work and her phone kept cutting in and out. We couldn't understand her and didn't know if it was because she was in the middle of a seizure or in a part of the school that didn't get good reception. To make my nerves even worse, I couldn't get anyone at any extension I dialed at the school to pick up. I could just imagine #1 somewhere in the middle of this 3000+ student campus seizing. As it turns out, she made it to the band hall, grabbed a buddy of hers and they made it to the nurses' office. Even better news is that they approved our application for homebound instruction for her – the ARD is scheduled for Thursday so that we can officially make it so.

Something funny – I told the nurse while I was signing her out that she wasn't coming back to school no matter what the decision of the homebound coordinator was. The risk of her increasingly seizing (say THAT five times fast) over the next 3-4 weeks is too great to have her at school. When we were checking her out of the attendant's office, the attendant gave us a "Return To School" pass. I told her that we wouldn't need it, that #1 wasn't coming back. She said, "That's okay, she can bring it with her tomorrow for her advisory teacher". I said, "No, she's not coming back at all this year," which gained me a very concerned look from the attendant. She finally said, "Well, she'll need it when she returns to class," at which point I just gave up and took the pass and told her that I'd make sure #1 had it in her backpack at the beginning of her junior year. At that point the nurse and #1 started laughing and we all merrily trudged out to the parking lot.

Soccer Saturday

SOCCER

You're doin' it wrong!

LOL -- this picture was taken by one of our soccer dads. My husband and I threw up a quick site for the team this spring and we get submissions from the parents. This one just cracked me up!!!

My girls have always played some type of sport. #3 luvs her soccer and we play spring and fall. #2 has the natural grace and athletic ability, but hasn't been able to decide upon a sport until this last year. And her choice isn't really a sport -- it's dance. She is in process of trying out to be a athletic trainer this next year and I hope it works for her because it will keep her involved and active.

#1, poor baby, has no natural grace or ability AND if the sport involves a ball in any way, shape or form, she usually gets hit in the head or gut with it. Example: When she was 6 she played soccer for one term. I can remember her being gung ho until she was rushing the goal at one point and the goalie kicked the ball HARD for a 6 year old and it flew right into her stomach, not only knocking the wind out of her, but knocking her off her feet and on her back in the middle of the field.

Or how's this one: One short year later she decided to try softball (WHY do they call it softball when the ball is harder than a baseball??). That was the very year -- the very season she was diagnosed with epilepsy and she had just gotten out of the hospital the week previous. Her coach was warming up with her and she wasn't paying attention as was her custom. He threw the ball at her and she turned around JUST in time for it to hit her right between the eyes, causing her glasses to go flying and again, knocking her flat on her back. That poor man was beside himself because he had just hit the epileptic in the head with a ball. I think he expected that he was responsible for each seizure she had after that.

Life happens, and for #1, it happens around seizures.

Homebound

The neurologist's office called this afternoon to discuss our decision to place #1 on homebound instruction at school a month early. After explaining that she's missed so much school the last 12 weeks and the fact that trying to catch up was adding undue stress, combined with the fact that she will be missing the last six weeks of school anyway due to the surgery, they agreed that homebound would be best. #1 herself has mixed feelings – she's glad to finally be rid of the having to play catch up, but she's disappointed that she won't be allowed to attend school with her friends and that she'll have to make up the electives (homebound instructors will only teach your core classes, not the electives). I think it is a wise decision, though.

It's funny – one of my co-workers has a daughter in her mid-20's and she is going through her first MAJOR breakup and it's been worse on mom than on the daughter. I was sitting in her office this morning while she was telling me the happenings of the last few days and at the end she said, "But it's NOTHING like what you are going through." That's not the first time she's said that to me and as always, my response is, "We are all mothers and the trauma of our children affects us no matter what it is." We've been dealing with #1 and her issues for so long that it's a part of our regular life and so I don't feel as though my family or my life is different in any way except our struggles are medical in nature. I've even had people say after meeting #1, "You'd never know that she has problems, she's so normal looking." Hello??!! #1 is the face of epilepsy – it's not a life sentence or a diagnosis of automatic retardation or brain damage. I guess they expect her to look "damaged" in some way, not like a normal teenager. I'm real fond of saying that the world doesn't stop because #1 has epilepsy, #1 has to learn how to live in with world with her epilepsy.

On other family notes – soccer game for game at the unjust hour of 8:00 AM – IN THE MORNING!! So much for sleeping in some. I'm already tagging tomorrow as a nap day (that either makes me extremely old or extremely tired – maybe both). It's also my wonderful hubby's grandma's birthday, so we'll be up late tomorrow night celebrating the big 85 with her.

Later – got to get some much needed sleep.

Keppra Cruelty

I do not like Keppra. I do not like my child on Keppra. Just saying.

#1's attitude takes a HUGE dive with the Keppra. We were told that it could cause moodiness, aggressive tendencies, etc. However, sometimes this normally laid-back, non-agressive, non-violent, sweet young girls turns into the wicked witch of the west, with poisoned daggers shooting out of her eyes, vicious bile-laden words spewing out of her mouth, and OMG!!! -- the stomping around, the carrying on, the tears and the hate (and that's just ME!! You should see HER!!)

By the time we ended up leaving for church last night (which was just an hour and a half after picking her up at school and getting to the house) I was in possession of her laptop, her iPod, and her cell phone. I always tell the girls that while there might be valid REASONS that they feel or act a certain way (like hormones and Keppra) there is no EXCUSE for not controlling what you say or do.

Of course, I ended up giving back the computer and stuff because I am a reasonable person who tries to understand the basis for whatever they are going through. But still...life is tough at our house sometimes.

EVENING UPDATE:
It's about 9:00 here and all is calm and quiet and normal. I don't know what makes some days worse medication-wise, but today is a welcome respite after yesterday. I came home, piddled in my garden, weeded and watered. I made dinner and the girls had some friends over. I have gotten good family time and life is good.

Memories….(light the corners of my life…)

The last few weeks I have been trying to spend as much time with all the girls as possible, but especially with #1. The "what if's" are racing through my brain right now. "What if" the #1 going into surgery isn't the same #1 coming out? "What if" she comes out brain damaged? "What if" she doesn't come through at all? I know that I've placed my girl in God's hands and that He has the ultimate plan for her, however, my human side sometimes struggles with acceptance and these "what if's" are bothering me.

I've had snippets of memories come out of nowhere. For example, the other day I was telling my husband the story of when #1 was about 6 months old and my sister was over playing with her and had her raised above her head, twisting her back and forth and making her laugh. And during one of those over the head maneuvers, the reflux reared up, and with the loudest sound to come of that child's mouth to that point in her young life, she drenched my sister with what seemed like a gallon of baby spit-up. And a half-gallon in my sister's open, laughing mouth (which stopped laughing pretty quick – LOL). I know – really gross, but really funny at the same time.

I remember that baby being my constant companion for the first year and a half of her life, lodged on my left hip, laughing at the world. She was such a good baby, she was an easy-going toddler, and she's been a great teenager so far.

Nothing like mom-worry to bring out the mom-memories.

Mixed Moods

Today is one of those days where I'm glad to see the end of the day. Not a bad day, per se, but an extremely long day. On the surgical front, I spoke with #1's counselor at school today and we decided to go ahead and place her on homebound instruction. This school year has been somewhat of a wash for her to date and she'd have to go on homebound instruction the week before her surgery anyway, so by beginning a few weeks early, we give her the opportunity to catch up with stressing about stuff. She'll have to make up a couple of electives over the next year or so, but other than that, there shouldn't be a negative from the scholastic point. From a social point, this is murder. Nearly 16 and sophomore in high school isn't the time that you want to be away from the social scene, but I really see no way around it.

My workplace is being very generous with me and my time off. They are allowing me to work from either a minimum number of hours or from home (or the hospital) for a number of hours each day for the entire time that #1 is in-patient. My hospital is just a couple of blocks down the street from the pediatric hospital that #1 will be at. I can get away for 3 or 4 hours a day and put in my time with no time being recorded off. If I didn't, taking that kind of time off would kill us financially. I took a total of 12 paid weeks last year for my own procedures and vacation. Between that time and the time I've taken this year for #1, I just don't have any left. I am so very blessed to be where I am.

I think that we are all ready to get this over with – us as a family, and #1 especially. While we don't lay down and die when stuff like this happens, this past year has taken a toll on all of us. #1 aside, my other two children have gotten the short shrift at different points due to the time and energy spent on other necessary thing. #2 especially feels left out at times and is pretty vocal about saying so. Not in an ugly way, but enough to make me think that I haven't taken enough time to spend with her. She's worried about her sister, but she's a teenager as well, so as a result, she feels shorted the time off from school, the time that #1 spends with us at work, etc.

More later – my new favorite game calls – Chocolatier II. What a game geek, right?

Surgery Date

Right before I was about to walk out of the office this afternoon, my phone rings. I looked at the caller ID and saw it was from the surgeon’s office. Sure enough, the doc’s assistant was calling to schedule #1’s surgery. She offered two dates for us to choose from – May 5 or June 9. After talking about it with #1 and with the wonderful hubs, we have decided to go with May 5 for a variety of reasons.

First, this school year has pretty much been a wash for her with all the absences and the resulting “Incompletes” from the last grading period. Combine that with the fact that her current grades are struggling right now because she missed so much interim stuff, it makes sense to take the end of this school year off. Secondly, the there is a possibility that she might need some rehab afterwards because of a possibility that she will lost some left-side function. So if we go with the earlier date that gives us four additional weeks for her recovery before the new school year.

It’s a scary thing, but we’ve placed it in God’s hands. With His help and the skill of the surgeon, #1 has a chance at a better life without seizures.

LONG Day

Today has been one of those days that has seemed so full of grief and hassle and it has gone on forever. It's only 8:45 at night, but it feels so much later. Things are quiet on the seizure front – this latest drug cocktail of Keppra, Lamictal and Trileptal seem to be working, with only one seizure in the last 4 weeks. It's an accepted fact that once an epileptic fails two drug therapies or more that they won't have much control no matter what the drug. #1 has been on too many anti-seizure meds to count, so while we have a tenuous control now, I don't expect it to last. I am hoping that it will last at least until her surgery date, however.

My hubby and I got off to a rocky start this morning, but the good thing about marrying a Christian man is that we both share the same beliefs and after a while, things were back on track. That's about the time my cell phone beeped, alerting me that I had a voice mail. It was from my mother. I think I mentioned a few posts ago that my parents' are heading for divorce. Neither one of them seem to be capable of acting like adults and instead are behaving like a couple of children. Dad has a female friend, and while I don't even pretend to know whether or not they have actually crossed the line and slept together, he has put himself in a bad spot for a married man. Mom knows about the woman, about their friendship and is acting like a jealous teenager – tracking dad down at the lady's house (which happens to be a rental house that my parents own), bad-mouthing him all over town, etc. For the last few weeks now neither one of them has said anything to me about what's going on, but my sister is catching the brunt of things because they are both venting to her, and she in turn vents to me.

This morning, however, mom dragged me into it and the entire day has been spent with phone calls from mom and my sister. My sister is at her wit's end – she's had it and my dad has put her in a really uncomfortable spot because of some things that he has asked her to do. She finally broke down this evening and told me that she just can't take it anymore. She told dad that she had no respect for him any longer and that he needed to drive to her town, take care of this business that he has asked her to do, and then she doesn't want anything to do with him again. On top of that, mom let it be known that my girls weren't going to their house for spring break because of him, which is NOT what I said. What I did tell her was that my girls had already lived through a war very similar to this with their schizophrenic, abusive dad and that I wasn't going to willingly send my girls into their war zone and let them become pawns in their game.

So, my head and heart are full of concern and worry. Worry about my mom and dad, their health, their mental stability, and their 40-year marriage. Concern about a few things here in my own home, and the constant worry that I carry with me about #1 and her health. Worry and concern weigh me down and I'm feeling all used up and old today.

Visit with the Neurosurgeon

Tomorrow is our appointment with the neurosurgeon who will be performing #1's surgery. She is coming with us to this visit. I did ask her if she wanted to or not and her response was, "Uh, YEAH! I want to meet the person who will be doing my BRAIN surgery, Mom." And I really didn't expect anything different, it was just odd to hear her say it. I think that tomorrow will be her epiphany. The date where the possibility becomes the reality. My epiphany was a couple of months ago when the neurologist called me at work to let me know the most up-to-date test results and the fact that their neurology board had decided to pursue surgery for #1. I literally sat in my office and cried like a baby because the possibility had become my reality.

I don't mind saying that I am scared. I put my faith in God, but my human side comes through when I think about someone operating on my baby's brain. The possibility that my #1 going into surgery might not be the same #1 coming out of surgery. I give this worry over to God each and every day, but because I AM human, I take it back daily.

On other topics, my mom and dad have been married for 40 years this February. Unfortunately, I don't think they'll make it to 41 years. My mom's brain functioning is going downhill quickly, but to top that off, it seems as though my dad has struck up a friendship with another woman which is really causing difficulties in the house. Just as a quick background, my mom is the most unfeminine, non-maternal, hard-nosed woman that I have ever met. She has been difficult as long as I've been alive. To top things off, I believe that she is bordering on a strong diagnosis of either dementia or early-onset Alzheimers. BUT that's no excuse for my dad to decide after 40 years of marriage that he's had enough. He wouldn't leave her if she had some tangible illness such as cancer. But because this can't be easily diagnosed, not something you can touch or read, he's ready to call it quits. On the one hand, I can't blame him because I know more than anyone what it's like to live with someone who is mentally ill (my ex is a schizophrenic). However, on the other hand, she is sick and I feel strongly about leaving a spouse because they are sick and not meeting your needs any longer. I can't worry about that right now, however, there are so many other things going on in our lives that carry greater worry weight.