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Thursday, May 29, 2008

Update and Pictures

The grid placement (the wires are attached to the electrodes on the grid on her brain)

The incision for both the grid and subsequent resection (much larger than we expected)

Yeah! First official walk with the Physical Therapist (she gets that keen fashion sense from me, BTW)

My baby lost half her hair from the surgery; she decided to shave the rest so it would grow evenly.

The homebound instructor is here and he and #1 are wrapping up the end of the school year. It looks as though she will pass these two subjects (there are two instructors – one for math and science, one for English and history), even though math will be by the seat of her pants. This year though, that's good enough. At least she won't enter her junior year a half semester behind. We finally heard from the rehab facility yesterday and she is set to begin the week after next, so by the time marching band begins late July/early August, she will physically be ready to start.

Seizure-wise, she hasn't had any seizure activity for a week now. I think that's absolutely incredible. She's sleeping much much better compared to before surgery. I can't remember if I said before, but the medications were never stopping the seizure activity on the brain, so she could never "shut off" at night to sleep. In addition to that, the seizures were tied in some way to her sleep patterns, so the majority of them would occur at night. According to her report, she's sleeping deeper, better, and waking up more refreshed. Her two-week post-op with her neurosurgeon was Tuesday and he was thrilled with her progress.

For the first time in quite a few years I can look forward in her life and see a future that is wide open. It's way too soon to tell yet, but even if she does require minimal meds to continue to retain medical control, it won't impact her life like it would have beforehand. I can envision her future and it doesn't revolve around the epilepsy. Wow. What a concept, right? I guess our goal now is for her to learn how to be a normal teenager and for me to learn to be a normal mom. I can't even imagine it.

Monday, May 26, 2008

5/26/08 Update

It's been about 2 and a half weeks since #1's 2nd surgery and she's doing great. Because of the continued residual seizures, her neurologist decided to minimally up her dosage of Keppra and since then, she's had really no seizure activity to speak of. What she does have is a rip-roaring case of the "poor me" due to her hair loss. We ended up shaving her head because the surgeon shaved literally half of it off (and it was about 2 foot long to begin with). She looks like a young Sinead O'Connor. The shaved head only emphasizes how petite she is and how fine her bone structure is. She, however, can only mourn for the loss of her hair and it is making her horrible to live with. Physically she is feeling fine (although a little physically tired now and then – that's expected). We have taken her out a couple of times – once for lunch, once to a movie, and once to her little sister's awards ceremony. Each time it's been a battle to get her out, and she will admit that it is because she's self-conscious about her ultra-short hair. There have been times over the last week that I know I'd enjoy poking myself in the eyeball with a toothpick more than going anywhere with her. She won't even begin to think about a cover-up, a hat, or anything else.

We tentatively began her homebound instruction again this past Thursday and she did great. She has a real possibility of being able to finish out the year with no detriment to her scholastically. Math, however, continues to be her Achilles' heel, but if she applies herself for the next 2 weeks then she will even complete that course on time and with a passing grade.

I am having some difficulty getting her Physical and Occupational Therapy scheduled, since all the places that we've been referred to all agree that she needs to be seen sooner rather than later, however, none of them are able to fit her into their current caseload. I'm going to begin calling again tomorrow to see how soon we can get her in.

Monday, May 19, 2008


#1 came through the second surgery absolutely fine.  Her resection began late Thursday afternoon (May 8) and lasted only five hours, which was much better than the eight hour time frame they gave us.  The surgeon was hopeful that even though they could not remove each spot that seizure activity begins from, they got the two largest areas and he is positive that even if she still has some residual seizure activity it will be much better controlled and that we have improved her chances for a better quality of life. As it stands now, she went into this taking four different anti-seizure medications and is currently only on one. Woo!!

The even better news is that since the day after her second surgery, she has been consistently awake, coherent, and cognizant.  As a result, we have a much better idea of her functioning.  The physicians expected her to lose some peripheral vision, however, she has all of her peripheral, it's just a little "off" and it is believe that it will resolve itself over a few weeks' time.  Additionally, they expected her to need significant physical therapy due to a loss of left-side function, but she has been up and walking and working with the in-house physical therapy team and they have only deemed it necessary to order light PT/OT on an out-patient basis due to a small lack of coordination, not gross loss of function.  She has had four seizures since coming out of the resection surgery, however, her neurology team has assured us that this is normal under the circumstances and is in no way an indicator of a lack of success of the procedure.  She could actually have seizures for nearly 3-4 weeks afterwards, but due to the surgery itself and not the epilepsy.  We have also noticed that the tone of her seizures has changed -- and seemingly for the better.  They do not last nearly as long and she rarely loses complete consciousness with them and regains her strength and alertness immediately afterwards.

We were discharged on Mother's Day (what a great gift!!) and she has been recovering really well at home. This was MUCH sooner than the 2-3 week hospital stay we were told to initially anticipate for these surgeries.  God is good and I see a great life ahead for my baby!!

Monday, May 5, 2008

Hospital Day 1

It's been a long, tough day. We arrived at the hospital this morning at 6:00 am for #1's surgery. The grid placement went well, her CT looked good, however, they didn't have a bed in the monitoring unit for us until nearly 9:00, so we spent nearly 6 hours in the recovery area waiting. Right before they were to transport us to the unit, #1 had her first seizure. It was a doozy, lasting a minute and a half. The bad part was that none of her electrodes were hooked up because we were still in recovery, not in monitoring. She just had her 2nd one of the evening, lasting a full minute. Hopefully we won't have to wait long for them to see enough good ones to record so that we can get this second surgery over with soon.

My baby is in a lot of pain, the morphine and Tylenol 3 aren't helping much. On top of that, the severe seizures that she is having will have her sore for days afterwards. I know that this is just the first day, however, I guess we expected less pain since it is the brain. I'm guessing that it's actually the incision site itself that is hurting, although she is so out of it that she is unable to verify that. I've spent the majority of this day worrying and crying for my baby. This is just the first day, though, to a life that we are praying will be seizure free.

Sunday, May 4, 2008

Night Before

It's late here – nearly 11:00. The house is quiet, except for #1 tossing and turning that I can hear over the monitor. In just about 8 hours, my baby will have the first of two surgeries. Tomorrow's surgery is to place the electrode grid over her right parietal lobe, with electrode strips in other areas. This will help the surgeon to determine more exactly which areas of the brain to remove on the 2nd surgery. In order to do this, they will have to capture seizures while the grid is in place. To better facilitate seizures, she has been taken off of all her anti-seizure meds. My baby looks like she is going through the DT's. Or a better description would be that she looks like a Parkinson's patient. Her hands are shaking so badly at times that her entire arm moves. Her feet and legs are twitching constantly. Her aura comes and goes, but we haven't seen one seizure as of yet. She's gone from taking 14 pills per day to none as of this evening. The Trileptal was the first to go about a month ago and four days ago, her neuro pulled her Lamictal, Keppra, and Klonopin.

I am afraid. I am afraid of the brain surgeries themselves. I am afraid that the beautiful, wonderful young woman that I have the privilege of calling my daughter will not be the same young woman that comes out of surgery. Most of all, I am afraid that she might be one of the few that this surgery doesn't work for.

I have given my child to God to watch over for the next couple of weeks. I'm just borrowing her on this earth and He does a much better job of taking care of her than I do.