Life after Ike

It's been a long two weeks. Hurricane Ike swept through here two weeks ago and wreaked havoc on our area. We fared alright – we have our electricity back on after 13 days and life is beginning to feel normal once again. Our home came through okay, however, the top 60 feet of a nearly 120 foot oak tree in our back yard took down part of our garage and back yard. Still, we are so very blessed as it is nothing that cannot be fixed and our insurance will cover.

That Friday night we set the girls up in the great room since we are prone to losing trees in serious storms and we didn't want them upstairs just in case. I don't think my wonderful hubby and I slept a wink all night long. The winds and rain began late Friday afternoon and by about midnight, it was getting pretty serious. We kept hearing large branches hit the roof and each and every time we would run upstairs to make sure there were no leaks or damage. At some points we could literally feel the roof lift a little and the pressure inside the house change. At 3:30 we heard an extremely loud "crack", but nothing else. A little before 4:00 am we heard a whistling sound and then the very foundation of our home shook and vibrated. We rushed to take a look out of the back windows, but all we could see was tree. One of our very tall and magnificent oak trees was now our back yard. It had come down on the garage wall and roof and had taken out our back fence.

The funny thing about that is that we had parked our one and only car inside the garage to keep it safe. LOL. We NEVER park in the garage; however, we figured that since we had just the one vehicle, we should move it indoors. God was watching for us, though, because the roof caved in, but didn't come quite close to the roof. We did have one casualty – our big chest freezer that was against that wall.

Even funnier is that the girls – who are normally afraid of regular thunderstorms – slept through the entire hurricane. They never heard any of the limbs hitting the roof an they never felt the tree hit the back yard.

In the light of day, our neighborhood looked like a war zone. Nothing compared to Galveston and other coastal communities, but still – it was pretty desolate. It took 13 days for us to get our electricity back on. During that time we lived outside during the day and ran the generator at night for the fan. Community meals became the norm and the pull of solidarity was strong.

9/1/08

It's been quite a while since I updated last. School has begun (Thank You, God!!) and all the girls have made it through the first week. This next week life gets back into what we hope with be our normal routine again. Since Kelsey's surgeries in May, the wonderful hubby and I have been working flex/remote hours at work so that she is not home alone and let me tell you, that makes for L-O-N-G days.

Kelsey is back in school, as well, and she is glad to be back. We figured out that she's been out of school essentially since January of last year – first due to all her absences and then from being placed on homebound instruction. For a teenage girl – that's a rough time. She is doing wonderfully, though, with no seizures in nearly three months. Right after surgery she began to get severe headaches, but those are resolving as well. At her last neuro check-up, her doc said that she will essentially always have epilepsy since they were unable to remove all the parts that were causing the seizures. The important difference now, however, is that we have control. Control with just ONE medication instead of four. Control with no seizures in-between. Control. What a wonderful word, right? If she maintains control as well as she has been, then her quality of life has improved 1000%.

Kaitlin is an athletic trainer this year and rotates through all the sports, however, it's high-school football time in Texas and that means that her primary sport right now is football. She's enjoying it and has really taken to it. Cam is Cam. <smile>. She's a good kid and too smart for her age. Her private school combines the 4^th and 5^th grades so this year she'll get a little higher scholastic interaction, which is something that she needs in my opinion, to continue to challenge her and force her to grow. She is so very intelligent that she sometimes stagnates on her grade-level work.

Life is good and God is great. I am so glad that we are on an even keel for now.

Drama, Drama, and Hey – Guess What? More Drama!

I guess in a house full of girls I should expect nothing less. #3 is going to church camp on Wednesday and won't be back until Saturday afternoon. She's fine with going, but that piece of drama involves getting my dad to take her up to the church on Wednesday in time for the bus to pick them up. We were raised conservative, old school, Church of Christ and I left the denomination a few years ago – our home church is a Bible-based, non-denom and my dad is one of those that believes you can't be any religion other than CofC and that it's the only church mentioned in the Bible and therefore our church isn't really a church. All well and good except that dad doesn't hold that opinion to himself and mentions that fact to my girls every chance he gets, which makes them uncomfortable and question me in detail each and every time. No one is really worried about Wednesday except for me.

#2 has some drama issues regarding her natural father and their upcoming visitation, which is supposed to begin this Sunday and go on for two weeks. She doesn't like going over there all too often and really only visits out of sense of duty towards #3 (keeping an eye on her, I suppose), but she's old enough to decide for herself whether or not she wants to go. Well, she doesn't want to go and she told him so this evening and he seemed okay with it, but it took days of her worrying over it and asking my hubby and I constantly what to tell him, what words should she say, etc. He has a habit of trying to "guilt" the girls into going when they don't want to, and when that fails, bribing them with stuff to do. The last time he tried that, he told them for two weeks that he had "special tickets" to some event, but would never tell them what – that it was a surprise, so all three went – even #1 – and they did nothing all weekend. He claimed that he ended up not being able to get the tickets to whatever it was. So anyway, needless to say, she was a little anxious about telling him she didn't want to go. And sure enough, he tried to tell her that it was okay except that now he had no one to watch #3 and that he would have to try to switch things around. We kept telling her to be strong when she spoke with him and for once, she was.

#1 – what can I say except that I am sooooo glad not to have to be a 16-year old girl ever again. She came to me a few days ago in tears and told me that she really still liked her old boyfriend and that she wanted to get back together with him when he had asked her a few weeks ago, but she told him no. I asked her if she had felt that way, why did she say no and her response was that she didn't think it was fair to put him through the uncertainty of her surgery and what she might have ended up like. Whew. Heavy stuff, right? So in my mom's wisdom, I told her that it was never too late, that he really liked her and that if she felt that strongly about it then she should tell him. Well, that's when the extra-super drama began because he didn't return her texts, phone calls went to voice mail and there were no return calls for two days. Well, we know this boy and his family fairly well and I just couldn't believe that he would blow her off, so we drove by his house this afternoon after church and she left a note on his door to give her a call. So tonight, his mom texted her back to let her know that his phone was dead and that he was at band camp and wouldn't be home until next Sun. There was such a look of relief on her face when she came downstairs to show me the text that I couldn't help but be relieved for her.

Life is sure fun some days – but never, ever boring.

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.

5/26/08 Update

It's been about 2 and a half weeks since #1's 2^nd 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.

Recovery

#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!!

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 2^nd 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.

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 2^nd 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.

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.