Tag Manager

Friday, February 29, 2008

Finally Connected

I finally got my laptop back this past Tuesday. I only had it for one short week, but I didn't realize how accustomed I had grown to it. It sure beats working on a desktop, that's for sure. My wonderful hubby and I went out of town last week for our belated anniversary trip. We go to a little bed and breakfast in Fredricksberg every year. This year, we really needed the relaxing time alone, as it's been a pretty stressful six months or so and we've got another few ahead of us.

#1 has gone nearly two weeks now without a seizure and very few medication side effects. We haven't adjusted her old meds (Trileptal and Lamictal), but we did add Keppra to the cocktail. Her neurologist called me yesterday to give me the final results of the PET scan and to let me know that the neurology board met for the third time to discuss her case and it was decided that she would indeed benefit from neurosurgery. We meet with the surgeon on the 11th for the initial consult and to schedule a date. We are still aiming for early June so that she can have the entire summer to recoup before beginning her extra-curricular activities in late July. I am utterly serious when I say that the thought of brain surgery on my child scares me witless. I know that the alternative is living with the disease, and that's not feasible. However, just imaging her being opened up sends shivers down my spine and prayers up to God.

It's late and I just finished uploading this week's assignments for school, so more updates later.

Monday, February 18, 2008


Our brand-new, less than a week and half owned, laptop crashed a week and a half ago. My wonderful, techno-savvy husband says the hard drive crashed, so we've taken it back in to the repair center for fixin'.

This has been such a rough weekend. I hit my low point this morning and had a good cry. My beautiful daughter is having such a rough time of it right now. We have changed medications (actually added an additional one), so now she's taking Trileptal, Lamictal, and Keppra. All with no seizure control. She had two seizures this morning, but I played the hard-nosed mama and sent her to school. Late, but there. We have found that variations from a routine tend to trigger more seizures. So as soon as she could, she was in the shower and out the door. I know it was the right thing to do because she came home in a really good mood. However, she's in a world of pain. Her TMJ is horrible because of the seizures. Her leg muscles are extremely sore due to the contractions. I am at a loss because of not knowing what to do.

My wonderful hubby and I are going for a much needed long weekend away this weekend. My dad will keep the girls so that I won't have many worries. Of all the people I know, dad is one of the few that I trust to take good care of the girls in general, #1 in particular.

More later -- I am mentally tired and need some rest before a new day dawns.

Tuesday, February 5, 2008

Another Day – Another Absence

#1 had a seizure last night. The Todd's paralysis isn't resolving itself as quickly anymore, so when it was time for her to get up this morning and go to school, she couldn't move her left leg effectively. The wonderful hubs and I both put in a half-day – morning for me and evening for him – so that we could stay home with her. She is missing so much more school than usual right now and it is stressing her (and me) out big time.

The worry sometimes is unbelievable. Not to mention the stress and fatigue. I think I slept for all of an hour and a half last night. We have a monitor in her room (which is upstairs and on the opposite end of the house) so that we can hear when she begins to seize. So, if I wasn't hanging my head over the side of the bed to better hear every little sound on the monitor, then I was running up the stairs to check on her to make sure that little noise I heard underneath the static wasn't a seizure. I know that getting to the surgical point is a process filled with tests and labs and physician visits, however, it just seems as though the days are creeping by. Her depression continues to spiral out of control some days. Fifteen is a difficult age under normal circumstances, however, being fifteen with out of control seizure disorder is rough.

The wonderful hubs and I are taking a 5-day weekend in a couple of weeks to get away and recharge. I feel a little guilty leaving her while she's going through this, but I know that if we don't take some time for ourselves, we burnout. Constant caretaking takes a toll. My dad will be watching the girls while we are gone, and I have total confidence in his ability to handle anything that comes, but I also know that #1 prefers mom when her health issues are interfering and I also know that she prefers to be home when things are bad. So that little chip of mom guilt that is planted on our shoulders when that first little darlin' is born continues to grow with decisions like this. Do we stay? Do we go? What would #1 want? Geez.

More later.

Monday, February 4, 2008

Medication Messes

I am sitting in my bedroom, watching #1 as she struggles through yet another bad medication day. The combination of drugs and the dosages that she takes sometimes gives her horrible side effects, which include disorientation, migraine-type headaches, blurred vision, etc. Today is one of those days. Actually, every day has been one of those days for the last few weeks. Sometimes I feel as though treating the disease is worse than having the disease itself. I watch the struggle that she goes through some days and my heart hurts for my girl.

She has such strength of character and goodness of spirit, however, these last few months have been really rough on her. Her PET scan is scheduled for next week and then hopefully we can schedule an appointment with the neurosurgeon to talk about the surgery and schedule a date.

We host a teenage small group for our church every Sunday night, but because of SuperBowl yesterday, they are meeting tonight instead. And where is my daughter? Sitting on the loveseat in my room because her concentration is shot, she is in pain, and can't see straight. Back in my teenage days, that would have been the mark of a great weekend!!! But for an epileptic, that's bad stuff.

I spoke via conference call this afternoon to a partial ARD panel to see what can be done about her absences. It was decided that we would modify her schedule and let her come in later in the day so that hopefully most of the issues will have passed before her 2nd period. I have to say, I've tried to get her help scholastically over the last 8-10 years and have NEVER had the good experiences and attention that we have at our current district. She has a wonderful case manager and counselor that have such an interest in her welfare. We are blessed, indeed.

As I speak, my youngest daughter is sitting on the bed playing Xbox with the wonderful hubs. She is a hoot – she can carry on a conversation solely with herself and whichever character is onscreen at the time. I believe they've been playing for nearly 30 minutes now and I don't think she's come up for a long breath in all that time. LOL – I used to ask her every morning when she was younger if she had decided who she was going to be today – Miss Mouth of the South OR Princess Chatterbox. I KNOW she's got her mama's genes in her because I used to be the same way. I come from the day of television commercials that actually had jingles. I never have been a TV watcher, but I can remember sitting in the living room with family reading a book during whatever show they were watching and then when the commercials came on belting out the jingles at the top of my lungs. My dad used to get so very annoyed and it would usually end badly (oh, such as me being sent away or fussed at for my "voice that carries"). But that never stopped me. To this day I can sing some jingles for products that don't even exist any longer.

My next post will begin to give the background on #1's epilepsy and how it was diagnosed. Again, I just want to mark this down for posterity – so one day she can look back on this time – to document the road to surgery – to give mom an outlet that I don't have anywhere else right now.

Sunday, February 3, 2008


This is my first foray into the world of blogging. I mainly wanted a forum to put down thoughts of what we are going through, as a family, in the process of getting my oldest daughter ready for surgery for epilepsy. She was diagnosed about 9 years ago and her seizures have gotten progressively worse through the years. Multiple medication therapies have not been effective for her, so she is in the final stages of getting all the pre-testing finished to be able to have surgery possibly in June of this year.

Background on the family – I am married to a wonderful, strong, Christian man and we have three beautiful daughters, #3(7), #2(14), and #1(15). This is our second marriage each and all the girls are mine from my first marriage, but my wonderful hubby considers them his own and our girls could not love him more than if he were their own biological father.

I'll write more later about #1 and her epilepsy and the struggles she's been going through recently.