Well, we got home late this afternoon! It's good to be home and Amanda and I have both already crashed for a couple hours, each reveling in the comfort of our own beds.

We don't have answers exactly, but we are claiming something of a healing. Long story short is that the eeg's ran perfectly normal the entire time she was in there, which is something that's never happened before for her. Does it mean she could be well again until next week, next month or next year? Yup, pretty much any of those. But could she be well forever? The doctor claims it's unlikely, but it is a possibility.

So on one hand, we have no definitive answers--there is still definite scar tissue visible on the MRI's, so there is a likelihood that she will have seizures again at some point, and he has seen kids who have epilepsy have perfect eeg's. It's very interesting that in the past though, her eeg's, even when she was well controlled, were NEVER good. So this is new for her, and to me, it's significant.

But conventional medicine says we can't be 100% sure of anything because except for the scar tissue she's always had, there was just nothing to see--even when they stressed her body, she stayed stable. So we are claiming a victory, and moving on, and considering her healed at this moment, for this day. Mom will still worry--that's what Mom does well. Dad will remind me that each breath is a miracle and a blessing of it's own. That's what Dad does well. But for now, we will celebrate the peace and grace that this day brings and celebrate the wellness of 'now.'

My friends may be called on occasionally to remind me of that. :-) But for today, life goes on--just with a bit more thankfulness. For someone like me who likes things nice and tidy, with finite, clean beginnings and endings, I am certain that there are some God-shaped lessons for me in this. But as Amanda is fond of saying, "It's not all about you, Mom." So, for now we just thank Him and move on.

Thank you for praying us through this thing. I can't think that any of this looks this way for any other reason than because of the prayers you have tendered to Heaven's gate on our behalf. So thank you. I believe your prayers were heard, and effective. I'm still trying to understand all of it, but right here, I understand the peace that passes human understanding, and the grace that falls like rain. And I understand that I will never completely figure out our God.

Blessings,
Megan

Last night-new journey

Well, it looks like we head home tomorrow, unless something dramatic happens yet tonight. The doc thinks that we, at this time, aren't looking at surgery, which is a huge praise. But we don't have answers either. More tomorrow, but we are trying to understand what this is about, and what God is up to. Please pray that we understand what this new development is all about....

Blessings,
Megan

Mirrors

This morning, I remembered the faces of some of the moms I saw the morning we checked in. The moms--several of them who had been here a while--had looks on their faces similar to what I imagine soldiers faces might look like after having been on the battlefield for a while. There's just a sort of a 'no, I don't have any make up or hair products, nor do I care anymore' look. But it's more than that.

It's a look of someone who's been on duty for days, without a mental break or a cup of home-made coffee, or their routine, or little luxuries like a morning paper or maybe even clean underwear. The vacancy of the eyes, the unwillingness to make eye contact...they all contribute to the look of someone who has been on the front lines.

It occurred to me that this is a battle-against an enemy unseen, and often misunderstood, underestimated, pervasive, cunning and relentless. This enemy rests but never sleeps.

Now, I realize my position is not as dangerous as some of the front line parents who are battling every moment for the lives of their children. The little girls wearing pink caps so that you can know their gender, as the enemy has robbed them of hair....the children with vacant stares of their own, from small wagons or teenie wheelchairs--those are places where the enemy has battled and left irrevocable scars. I feel blessed and guilty at the same time, swapping stories at the family washing machines, or at the constant gathering at the coffee pot. I know some other moms might feel the same weird mix of blessings and guilt, when they compare their own situation to ours.

And this is not necessarily all a spiritual battle, though our ability to continue on is strengthened so much by our faith. There are so many moms I've met who are deeply, deeply ensconced in their faith.

This is a battle that includes faith, but also includes science, and even some art. The weapons are tenacity, employing the best strategists (doctors, neurologists, oncologists, etc.), and other arrows in the quiver, hugs, peaceful times, laughter, finding joy in the moments that matter. Laughter may not always be the best medicine, but it's a powerful weapon.

Some of us have been 'enlisted' in this army (all drafted, to be sure) for longer than others. Some have had longer tours in the front-lifetimes, even. Some of us have had frequent periods of shore leave, only to find ourselves back at the front, just when leave was starting to feel 'normal'. But looking in the mirror this morning I realized that the look I noticed on the faces of some of the moms who had obviously been in this thing for a while was looking back at me.

I don't mind being enlisted in this army. I'm equipped by those who pray for us, and I'm having a day where I feel ready for the battle. I may feel differently tonight when the lights go down and the entire hospital floor quiets, and I'm left to lie on the hard visitor's 'bed' in her room, listening to the occasional beeps and blips, and the thankfully infrequent code-calls, and best of all, my child's quiet breathing. That's usually when the enemy works the hardest on me though-through my own fears. That's when we move fully to the spiritual battlefield.

But for now, I watch my child reading some book from the 'pre-teen' section of Barnes and Nobles (something I would probably not have purchased for her, had I read more than just the outer jacket), and keep watch over my baby girl, ready to defend her with every cell of my being, knowing the worst, praying for the best. She's oblivious to the battle being waged in the heavens and on this hospital floor on her behalf.

I love her oblivion, her innocence. I pray that someday she will have children of her own and that she will never have to see what I saw when I looked in the mirror today.

Nope...nothing

Ok, no pic today because all we are doing is getting ickier in the hospital room. Poor Amanda has not had a bath since Thursday night. Fortunately, there is a shower for mom, but it still feels a bit like camping.

And besides that, NOTHING is happening. Her EEG has been super clean---cleaner than it should be for a kid with epilepsy who stayed up till 3 a.m. this morning. I'm ready for bed now, but the med change is messing with her metabolism and she is wide, wide, wide awake. Not me, though!

Anyway, they will be bringing up the stationary bike and have eliminated yet another dose of the meds. Tomorrow and Tuesday may be hairy. If I don't create an entry those days, you will know how to pray....or, we may just be sleeping. :-)

Blessings,
Megan

A new day, some good friends

Well, for those of you who are following along in our journey, we had some bright spots in our day today. We had a visitor from some friends--all of whom showed up at the same time. The guy who looks a little like John the Baptist in the picture here is our worship/youth minister, Tom. He played Guitar Hero with Amanda and may actually prove to be a formidable opponent....one day (maybe). And yes, the two lovely gals in the front are indeed twins. Their mom, Cydney, was next to me. That's Bob next to Tom the Baptist (well, non-denominational, actually) and Heather at the foot of the bed.



With all the visitors, I definitely was able to get over my 'personal bubble' as Amanda calls it, or need for my own space. This room felt for a while like the Utube video of all the people in the wave pool in Japan. Google it.



The praise request today is that the doc said she could still play it (but for limited periods of time) and it came in very handy in keeping her distracted while they inserted her hep lock. She has notoriously bad veins, so distraction was wonderful. It helped also that all these folks were in the room when the I.V. tech showed up. We feel very loved and supported.



And note to our friend JR: ask your kids what Guitar Hero is. They will know!!



Unfortunately, the doc said her eeg readings of the last 24 hours were absolutely beautiful--which is great if you're not on a seizure hunt. So tonight, we reduced another chunk of her meds and will reduce more tomorrow. She is holding up well, but tired, which is good. She started on book #2 a while ago. At this rate, we may have not brought enough of them!

This picture is of the view from our window, which we expect to see for the next few (?) days. The red-roofed building is Bob's favorite pizza place in the world (except Goodfellas in Orlando). It's called 'Perfect Pizza,' and he dines there often enough during the work week that the counter guys don't bother asking him what he wants anymore. But now, the rest of us get to 'enjoy' it...and have had two doses of it already. I suspect there will be more brought in soon. Ugh. But the girls are always happy when Daddy does dinner.

We have received more cards, calls, gifts, emails and love than we possibly imagined. I am having a hard time remembering to call and email everyone back, so now I need to hope for grace too. But so far, we feel firmly carried by your love, support and prayers, and are resting in the shadow of the Almighty. Tomorrow may be a busy day, but we will wait for tomorrow to bring itself here with it's own worries.

Oh-before he left, Tom the Baptist (non-denominational, actually) prayed with us and prayed for Amanda to have seizures. It felt weird hearing that from someone else. But I guess that 'soon' is how we are praying now. Thanks for joining us.

Blessings,

Megan

All Settled In

Well, we're here and settled in. This is a great hospital, as far as hospitals go. It's a teaching hospital so you get a new resident and his team at each shift change, etc. But everyone here is very kind and helpful.

Being here, especially in the main waiting areas and reception, really makes me certain that I am a great big baby. Seeing other kids being checked in with pink caps covering heads made bare from chemo, and other kids who are wheelchair-bound makes me feel pretty ashamed for my own fears. She is safer here then she's been in any environment for years, and the care team here has all the stuff they need handy. And even if doctors blink, God doesn't.

The only time I've seen the kiddo anxious was on the elevator up to the room. She had that 'wish I could bolt and run' look for a few minutes, but once we got in and she got a book in her hands, all was right with the world.

Amanda's had her first round of eeg's this evening, but she's wired up to a continuous 24 hour system, and the room has multiple cameras and microphones, which makes us feel weird. The lack of privacy is a bit unnerving.

They used a really strong smelling epoxy-resin type stuff to cement the leads to her scalp, but she took it all in stride and has been pretty comfortable, either with that book or Guitar Hero on her lap most of the time. Bob and Heather were in this evening for a while and Amanda whooped him round after round, as usual. I can't imagine what those eeg's look like when she's playing that thing!

Tonight and tomorrow should be fairly laid back in terms of trying to induce seizure activity. If nothing happens on it's own, they will start pushing her a little harder on Sunday and Monday. We have been told they may do some sleep deprivation stuff, some stress test type things (stationary bikes) and some more strobe lights.

Just now we had our first crisis--the nurse working tonight said we have to limit electronic interaction. She may have to give up the Guitar Hero!! Oh man. Well, that's something else to pray about I guess. :-)

Time to get ready for bed....thanks for reading!

Megan

Here we go....

Tonight is our last night at home for a few nights, and we don't feel like packing, watching tv or doing anything besides sitting around eating Extreme Moosetracks, which Dad just went to Publix to buy.

We are headed out tomorrow morning for a 10 a.m. admission at the EMU. I'd like to say I'm still feeling lots of peace, but truthfully I'm a bit more anxious than I have been so far this week. Amanda is feeling pretty good, and already building her book list for dad to bring. Grandma offered to send a book up, so Amanda is assuming that she will be enjoying lots and lots of luxury reading time over the next few days. Part of me hopes that is true, but I'm told that the sooner she seizes, the sooner we get to go home, get answers, get her back on meds, etc. It is so weird wanting her to have a seizure after 13 years of trying to keep her well.

Here's a pic of her in the pool--it's not real recent but it's one I like a lot.

Well, I'm reminded now and then to be ok asking for prayers. So, I'm asking for your prayers--not for me (though I won't turn them down) but for her. Please pray specifically for Dr. Ess, her neurologist. Please also pray for a short seizure, and for her heart and brain's safety. Pray for them to get all the information they need, and to be able to read it well in order to help us all make a good decision about what's next. Pray however you like--we'll take 'em all.

Thanks friends...time to go have my Moosetracks.

Megan

Counting down...

Well, Amanda's still doing great. She has been on the reduced dosage of medication since Friday and not even a blip, so we are extremely thankful.

Yesterday, we had her IEP meeting at the school. This is where we determine what special accommodations she will need in the upcoming year. She has had an IEP every year since she entered the school system and at times has had physical therapy, speech therapy, occupational therapy, special assignments, preferential seating, daily pullouts, daily organizational assistance, extra time given for tests and assignments, and more.

This past year, she's only had occasional time of out of the classroom and taken tests in a quiet room instead of the main room. She's managed to maintain honor roll grades all year this year. We are all very excited for her.

However, the best part of yesterday was when her special ed teacher told all of us that she is, "On track for a four year college, independent living and self-selected community involvement." Hearing that she will be able to maintain the level of independence that she desires was just like grace raining down on us. What a huge blessing.

Anyway, I will continue to keep you posted about what's happening as we prepare for our stay in the Epilepsy Monitoring Unit (EMU) this weekend. We now are at 2 days till our stay and praying for a quiet time before she enters and a quick stay while we are there.

Thanks for keeping us in your prayers!

Megan

Safe In the Storm

You know how adversity strengthens your faith?

Last summer, we were on a cruise ship. We got out to sea and about halfway through the 2nd day, we had the most incredible storm. The lightning was flashing--multiple bolts per second. The visibility as the heavens opened and rain poured down was nearly nothing, and the waves were pretty rough.

That day, we watched the storm from our stateroom. Now, I've seen storms off the coast from the safety of a hotel room. When those electrical storms hit the land, they're tend to lose a little of their ferocity. There is an intensity that takes place over water that is more amazing, more awe-striking, more incredible than anything on this planet you can imagine. It's almost primeval.

So we're on this boat, we are idling because of zero visibility, and we're floating with the big waves. The captain is trying to keep us from being tossed about too much but it's pretty rough just the same. Huge bolts of lightning keep striking all around us. They'd strike the water around us in every direction, two, three, four strikes at a time. The thunder was simultaneous, and it was continuous. In the midst of it, the foghorn continued to blow, adding to the overall surreal nature of the setting.

The kids were scared to death, but Bob and I just watched in awe. It was actually the best moment of our entire trip for me, because in it, I got a glimpse of God's incredible power. Later, I thought about Jesus waking up on a little boat in the midst of a storm like that, and finding his panicked disciples frantically bailing and trying to stay afloat. They were probably scared too, and likely were doing everything they could to fight the storm and save their lives, according to their own expectations of what should happen.

Well, the thing about storms is that they always pass. After a while, this one did too. Almost immediately, the sun came out, the sea flattened, and everything was calm again. Storms always pass. In our case, the storm lasted an hour, and then on it's own, it just went away. In the case of the other storm I mentioned before, Jesus just woke up and said, "Peace, be still."

So, I guess we are dealing with this knowing that God can tell the storm, "Peace, be still," whenever He is going to do it....and He always does, because the storm always passes. I'd be ok if He did that right now, but I don't have a lot of say in the matter so I pretty much have to sit here and wait and watch. I am so tempted to just bail like crazy and try to make it happen my way, but I know I'm supposed to be still and wait for this storm to pass.

One thing about storms though, is that there will always be another. Maybe each one we ride out will help us understand even better what to do next time...what to expect, when to bail, when to pull in the sails, when to just cry out to God to calm the waves. I wish I knew well enough when to figure out which to do, but sometimes we're not supposed to 'do'.... we're just supposed to 'be'.

I think right now, I'm just suppoed to 'be,' as in 'be still.' Sometimes the waves aren't around us, but in us. Sometimes our hearts are waiting for Jesus to come and say 'be still'. It's not the waves, it's our fear of the waves.

I believe she's going to be ok. I'm claiming a lot of promises right now, but I'm especially claiming His words and trying to remember to claim His peace. I need a lot of reminding, but I know the storm will eventually pass. It always does.

Amanda Update #1

Hi friends,
Well, tomorrow, Friday January 18th, we start messing with Amanda's medications in preparation for her testing in the seizure lab at Vanderbilt Hospital. The upside to this is that finally, after 12 years of what feels a bit like wandering in the wilderness waiting for answers, we may finally be closer.

Right now, I'm sitting in an airport waiting for a flight that is hopelessly delayed, thinking it's as good a time as any to start chronicling our journey. I suspect at this point that the testing will lead to brain surgery, though Bob is reminding me to take one step at a time. I wish I could, but of course, my thoughts always lead to the next place, and I can't help but wonder where that place will be.

Today, some of my team-mates at work laid hands on me and prayed for Amanda and our family. It was a profound experience. I am so lifted by their prayers, and over and over again, I am hearing from others who are reminding me that they are praying for us. I know that if God created Amanda, he can control the details involved in her body and her brain.

I've met a bunch of new friends on an epilepsy e-board. I have not participated in one of those for years, but now that things are getting pretty heavy-duty, I'm experiencing a desire to connect with other folks who have been through the same thing we are going through now. Many, many of the folks are very encouraging.

Yesterday, Amanda had a seizure at school--and this is before we removed the med that has been giving her fairly decent control. The next week, prior to her admission into the hospital, will be very, very interesting. Hope you continue to watch here and read her updates. And we covet your prayers!