Sunday, October 31, 2010

Adam's Baptism Day....

 Nothing like a family event to show off our true colors.  As hard as I try to pretend I have things together, my family knows better.  They get to see things as they really are--the thrashed bedrooms, the disorganized closets, and the late night panics to complete procrastinated tasks. 

Thankfully they love us anyway and all that didn't matter when we got to the church (as last minute as our arrival was).  It turned out to be a peaceful and perfect day despite our forgetting to bring towels with us to the baptism. 

Although everyone had to wait an extra minute for us, I still made sure we took a second to take a pre-baptism Daddy/Adam photo.


It was a stake baptism split into two sessions, so there were three other children getting baptized at the same time and another 4 during the following session, but Adam was the only one from our ward getting baptized this round, so after the stake baptisms we split off by ward for the confirmation service. 

For journaling purposes, here's a synopsis of the service:    We sang, "I'm Trying to Be Like Jesus" and "I Know My Heavenly Father Loves Me".  Cami played a beautiful cello medley of "I Feel My Savior's Love" and "When I Am Baptized" and Uncle Pete gave an awesome talk about the gift of the Holy Ghost. Bro. Stevenson officially welcomed Adam as the newest member of the ward and Grandpa Crain gave the closing prayer.  The entire time, Adam kept a tight-lipped "I'm trying-really-hard-not-to-smile" grin on his face. 

Here's a group photo that we took right after the service.  Unfortunately several people had already left, so it's not a full group....

(People who were there:  Bishop Mark and Karen H., Pete and Mika and family, Allen P. and boys (Sam, Saku, and Benjamin), Aunt Evelyn, Aunt Marilyn, Matt and Karey and Lincoln, Grandma and Grandpa C. (from Utah), Kent S. (conducting), Eve, Hannah, and Becca T., Bruce and Mikey N., Nick M., Kim, Kyler, Logan, Gavin N., Steven and Benjamin L., Scott and Lance D.,   Jeff, Hyrum, and Joseph T., Aunt Heather (from Minnesota), Alex, Ana, Gavin B.


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All in all, it turned out to be a wonderful day and we are thankful to all those who came from near and far to show their support.  What a happy day!!! 


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And since you know I couldn't get off with that few of photos for an event like this, here's a few Mommy/Daddy/Adam shots Aunt Heather took for us when we got home: 





We love you Adam!!  Congratulations on a wonderful step forward in your life!!!



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Friday, October 29, 2010

What's Better Than....

a gorgeous autumn day that also happens to be CRAZY HAIR and MISMATCHING CLOTHES day at school?   







I'll tell you what's better than that....


...A gorgeous autumn day that also happens to be CRAZY HAIR and MISMATCHING CLOTHES day at school AND also happens to be the day when Grandma, Grandpa, and Aunt Heather arrive into town for Adam's baptism this weekend!!!!!


Oh yeah!!  Can you feel the excitement?  





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Tuesday, October 26, 2010

Tis the Season...

As the night air cools and the hues of autumn light up the world in a blaze of color...



I find myself turning inward and pondering on the hallmarks of the season....



the quaint roadside stands with even quainter names that pop up around town...



the folksy yard decorations that bring a smile to my face....



and the hearty, cream filled soups that warm our bodies and bring a sense of nostalgia for simpler days.


Days when calories didn't matter and a treat in each hand meant it was a great day....


days when you didn't care that your dad was a vampire and not near as dazzling as the Cullens...


 nor as fearsome as the neighborhood pig,  Count Porkula....
But mostly all I really wanted to say is...
Happy Fall Y'all!!! 
Enjoy the season!


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Answers to the Super Hard Quiz

Which one of the following statements are NOT true about my last week?

a)  I wrote over 85 emails in 4 days' time coordinating a PTA sponsored event.  Totally true.  The event went off without a hitch and made oodles of money for the PTA.  

b)  I picked a friend's front door lock with a credit card in under 60 seconds.  I was picking up Cami from her regular babysitting job  and somehow in the transition  between one babysitter to the next they locked themselves out of the house with all the kids.  I felt really badly making the mom come all the way from work to let them in, so I gave the old credit card trick a try.  I was surprised at how easily it worked and I now have new motivation to keep my deadbolt locked.

c)  I spent 3-1/2 hours on a school bus for a 45 minute field trip at a farm. Unfortunately true.  Don't ask me why they picked a farm in the middle of boondock Virginia for a kindergarten field trip, but after the back cramping bus ride on swervy narrow roads and an entire 45 minutes on the farm, I was as grumpy as all the kids who weren't allowed to eat until we returned to school at 2:00.   On the upside, the drive was absolutely gorgeous.  Someday I want to take the family back to Waterford to actually have time to enjoy it. 

d)  I picked Ellie up early from school twice this week, because she was so tired.  True.  Once after the torturous field trip mentioned in (c) and again the next day when I walked by her classroom and found her in the class by herself with the teaching assistant taking a nap while the rest of the class was at recess.   I was a little sad that the teacher hadn't called me, but was glad that serendipity allowed me to rescue her from an exhausting afternoon at school. 

e)  I was yelled at by the lunch lady at school twice in the same day.  Yes, apparently the lunch lady was a little hormonal that day or something, because she yelled (actually raised her voice and treated me like a first grader) for minuscule provocations.  
Okay, okay.  I wasn't going to say, but if you must know...she yelled at me for wanting to place a bin in the lunchroom to collect the kids' milk cartons for an activity and then later yelled at me for taking 3 disposable plastic spoons to help scoop out frosting for the same activity.  She actually screamed, "Don't you ever come back in here again,"  when I took the spoons.  Good thing I was in a hurry and definitely non-hormonal or she would have heard an earful.  It was her lucky day.   
f)  I was finally officially nominated into the "Bad Mom Hall of Fame" when I hosted Adam's birthday party with little to no planning and several unsent invitations.    You knew this had to be the one that wasn't totally true.  While it's a fact that Adam's party was ill planned  (picking the party day to be the day after the large PTA event that I was coordinating was my first problem). Everyone here should already know that I was nominated into the "Bad Mom Hall of Fame"  a good 15-1/2  years ago when we took a three-week-old Spencer to an Orioles' game and sat down right behind the dugout.   Every time a ball came within 20 feet of us, people dove, not to try to catch the balls, but to protect Spencer from getting nailed in the head by a line drive.  I've been renominated entry into the hall of ill repute approximately 7322 times since that fateful day in 1995. 

"Why, yes, those would be my son and his friends running wild through the neighborhood during his birthday party.  "



g)  I took care of my family's Halloween costumes in a quick stop at a friend's house and a 30 minute trip to the consignment store.  I consider this feat my tender mercy of the week.  I was so overwhelmed and distracted by the PTA event, that I hadn't given their costumes a second thought, although they were supposed to wear their costumes to the event that night.  I had less than an hour between setting up sessions at the school and raced off to the big consignment store nearby.  I was completely amazed at how quickly I found perfect costumes in Emma's, Adam's,  and Glen's sizes. Ellie's cute little witch costume was purchased from a friend who runs a tutu business.  Shockingly, despite the haste with which they were chosen, the kids and Glen were all completely thrilled with their costumes.  (Pictures coming later this week). 
"No, I most certainly did NOT pick out the costume that Spence wore to the stake Halloween dance."

Winner gets their choice of a kajillion dollars (after I make my second kajillion, since I owe Glen the first kajillion for putting up with me for 17+ years) or 16 awesome comments on their next blog post.  

I just reviewed all the guesses and it looks like we have a tie.  Both Charlene and AnnaLisa are the full winners (do they know me or what?) and since Denise was almost right, she gets the runner-up prize.  Since I already owe Charlene a gazillion dollars from my last super hard quiz, they will each get 16 comments on their next post (Denise will get 8).   Look for your awesome comments coming soon! 




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Sunday, October 24, 2010

Super Hard Quiz #2874

Which one of the following statements are NOT true about my last week?

a)  I wrote over 85 emails in 4 days' time coordinating a PTA sponsored event.
b)  I picked a friend's front door lock with a credit card in under 60 seconds.
c)  I spent 3-1/2 hours on a school bus for a 45 minute field trip at a farm.
d)  I picked Ellie up early from school twice this week, because she was so tired.
e)  I was yelled at by the lunch lady at school twice in the same day.  
f)  I was finally officially nominated into the "Bad Mom Hall of Fame" when I hosted Adam's birthday party with little to no planning and several unsent invitations.
g)  I took care of my family's Halloween costumes in a quick stop at a friend's house and a 30 minute trip to the consignment store.

Winner gets their choice of a kajillion dollars (after I make my second kajillion, since I owe Glen the first kajillion for putting up with me for 17+ years) or 16 awesome comments on their next blog post.  

Make your guess and let me know which prize you prefer! 


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Thursday, October 21, 2010

Birthday Week

If I was tech savvy enough to do it, I would spare you the long post and put up a cool collage from Adam's birthday celebration, but since things like that require brain power, you're out of luck today.

Since his birthday was on a Saturday, it got stretched out to be an all weekend celebration--including Sunday morning crepes ( a birthday tradition in our house)....


with Daddy's special scrambled eggs...


and everyone's favorite of all...Nutella and whipping cream! 


Later on Cami made these beautiful (and scrumptious) Fresh Strawberry Cupcakes....


8 candles + 1 cupcake = easy, peasy to blow out


On Monday we buckled in our little confectionery delights....



that were cute as can be...



and shared them with Adam's very cute and very diverse 2nd grade class....

Adam was so thrilled with it all that he gave me his best unimpressed non-teeth bearing grin...
I think he thought he was being a bit rebellious by not giving me a full-blown smile for the camera, but little did he know that he totally melted my heart with those sparkly brown eyes and long lashes.  :)

Now I just need to figure out how I got to have 4 of my 5 kids over the age of eight.  I'm definitely too young for that kind of distinction. 


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Tuesday, October 19, 2010

Ellie's FAQ

I hope I don't bore everyone with all my posts about Ellie, but it's hard not to blog about something that is such a big part of our lives right now. There are a few questions that I keep getting asked again and again about her condition, so in the spirit of preserving this for our future blog book, I thought I'd do a FAQ post about Ellie's epilepsy.

How did you notice the seizures? (this is by far the thing I get asked the most)
The very first time we knew anything was going on was Sept. 22nd. We had just returned from piano lessons. I was at the top of the stairs and Cami and Ellie were talking downstairs in the entry way when suddenly Cami started screaming Ellie's name, "Ellie! Ellie! Are you okay?" She screamed for about 10 seconds while Ellie remained completely unresponsive, then eventually, but very confusedly asked, "What?" and went back to normal. After Cami explained to me what had happened--that she'd stopped talking mid-sentence, rolled her eyes back and look like she was going to pass out--I was worried, but hoped that it was an anomaly. But it was not to be. As soon as Emma heard what had happened she calmly informed me that Ellie had done the exact same thing in the car earlier that day. I observed it once more that evening and knew we had a problem. We took her to the pediatrician first thing the next day and they confirmed that it sounded like she was suffering from "petit mal" or "absence" seizures.  Since then, we've noticed that she has them dozens of times a day. 


How long do you think she'd been having them?
There's no way of really knowing, but we think we caught them pretty early.  We'd gone camping the weekend before and she'd been acting "off" ever since then.  We think that the drastic lack of sleep from the night of the camp-out may have triggered the seizures to begin.  (Just to clarify:  Nothing is known to cause seizures, but fatigue, illness, hyperventilation, and stress can trigger them in someone who is already seizure prone). 

Will she outgrow it?
Given her diagnosis of Childhood Absence Epilepsy, the chances are good that she will outgrow it sometime in adolescence (probably at least 7-8 more years of it). 


What are the chances of her developing grand mal seizures and/or other types of epilepsy?

According to my internet research, it looks like she has a 40% chance of developing other kinds of seizures.  Having any other kind of seizure would greatly increase the likelihood of it being a lifelong affliction. 


Do you have a family history of epilepsy?
 There is no family history of the type of epilepsy that Ellie has, which is the case in approximately 70% of children with her diagnosis.  Glen has an aunt with hormone related epilepsy, but the neurologist said that they're  not related.


Will it affect her intelligence/brain development, etc?

This is one type of epilepsy that does not tend to effect intelligence or brain development.  The main problem with these kinds of seizures is that she's "cognitively absent" a good portion of the day, so the children tend to miss a lot of instruction time at school.  In addition, it often seems like they're being non-compliant since the seizures sidetrack their focus.  I volunteered to help with her reading group the other day and noticed her having 4 seizures during the 30 minute segment of time.  


What about school? 

Honestly, the first thing I thought when all this started happening is that I would homeschool her, so we didn't have to worry about her at school all day.  But after keeping her home for about a week right at the after the seizures started, I realized that she really, really loves school and I just don't have the heart to take  this one joyful aspect of her life away from her.  I do worry about her being too tired to be at school and truly it really does wear her out, but when she comes home bubbly and excited about her day (before collapsing on the couch) I know that it's the best place she can be right now.   We have a lot of snuggle time in the evenings and my house is messier than ever, but I feel like as long as she's happy and progressing  we can make it work.  I think I drive her teacher crazy with my constant updates and worries, but she knows that she can call me anytime if Ellie's ever really dragging her feet.

Does the teacher notice the seizures?

The teacher has been prepped and trained at how to recognize the seizures and how to redirect her when she "comes back to consciousness", but actually the teacher does not notice them at all.  I'm glad the EEG confirmed that she really is having seizures (although I never doubted), because right at first I think the teacher really thought I might have been mistaken. 


What are the possible side effects of her medicine?
The list of possible side effects are long--depression, nausea, lupus, headaches, drowsiness, dizziness, etc.  Thankfully all we've noticed so far is that she's pretty tired and clingy.   We have to be a lot more die-hard about bedtime with her than we ever were with the other kids.  She really struggles the next day even going to bed half-hour later than usual.  We figure she has at least 7 or 8 years on this medicine, so we're hoping that the drowsiness will fade after a time. 

Have you noticed a reduction in the number of seizures since she started the medicine?
Not yet.  The neurologist said it could take several weeks.  The information that came with the medicine said it can take 12-24 months. 

   
What do you worry about most?
1.  I worry about her injuring herself during a seizure.  Thankfully her actions during a seizure tend to be weak and clumsy, which means that she doesn't go slamming into things or anything.  We're keeping her off of high things (like playground equipment) just to make sure she doesn't walk right over the edge.  We've also had to keep a close eye on her in parking lots and near streets as well.  She's not a wanderer by nature, so she's scared us to death a couple of times when she started walking away from us during a seizure in a crowded parking lot.   

2. I also worry about her getting labeled as "weird".  I think she's young enough now, that her frequent seizures, the odd movements, and the ensuing confusion can be passed off as just being young and distractable, but my heart has broken a couple of times when some observant friend has asked her why she didn't answer or why she'd just done that strange thing. 

3.  The rest of my worries stem from the unknowns.  What if she has a grand mal seizure?  What if she can never drive?  What about swimming next summer?  What if the medicine doesn't work?  What if she gets horrible side effects from the medicine?   How can we help her to gain independence?   And on and on.... 



And the question I know you're all dying to ask....

Have the seizures negatively affected Ellie's stellar sense of fashion in any way?








Nope, not a bit.  Same with her smile and giggles--they still light up whatever room she's in.    :)


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Sunday, October 17, 2010

Birthday Dossier

Name:  Adam Stephen

Age: 
8 years and 1 day

Interests
:  Legos, rock collecting, thinking of "what if" scenarios

Favorite dinner: 
It's a toss-up between lasagna and pasta salad

Birthday dessert:
  Strawberry cake with strawberry frosting and mint chocolate chip ice cream

Daily fashion statement: 
Shorts (preferably denim), t-shirts (definitely no collars), tennis shoes (sometimes tied, sometimes not)

Mad skills: 
Doing math problems in his head, beating his mom in races

Hopes and aspirations: 
A day with no homework and a plate full of cookies to himself



Happy Birthday Adam!


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Thursday, October 14, 2010

October 1, 2010

 NOTE:  This is an email I sent to friends and family several days ago when we were just at the beginning stage of Ellie's diagnosis.  I am posting it here unchanged for journaling purposes. 

 October 1, 2010

Hello everyone,
Those of you who know me well, know that I am a writer.  Not that I'm very good at it or anything, but it's always been an outlet for me. It is my hope that by sharing these regular updates and photos with you, that I will keep friends and family up with Ellie's happenings, and in process also preserve, for posterity, this journey we're embarking on.     If you prefer not to receive these updates in the future, although I don't think they'll be too often, please let me know. 
Take care,
Lara
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Since Ellie started having her absence (it's pronounced "ab-SAWNS") seizures a week and half ago, she's been having them several times a day, mostly clustered in the afternoon and evening when she's tired.  Sometimes she just stares blankly.  Other times her eyes roll to the side slightly and her eyelids flutter.  Other times she absently and clumsily continues in a motion (this is the one that scares us the most). The one thing that stays the same though, is that she's completely unresponsive.  You can yell her name, touch her, wave your hand in front of her face, and still nothing registers on her face.  She doesn't look at you, her expression doesn't change, she stops talking mid-sentence.  It's disconcerting and we're quite anxious to get to the bottom of it. 

The first part of discovering the diagnosis, was this preliminary EEG to find out what's going on in her brain when she's having her seizures.  It's all a bit over my head (forgive the pun), but depending on the wavelengths and where they originate in the brain, it is very informative at determining what kinds of seizures these are and what her long-term prognosis MAY be.  The doctor instructed us to have her get 3-hours fewer sleep, so that she would be sleepy (and more likely to have seizures) during the test, so we (Cami and I) kept her up until 11:30 by letting her watch “Anastasia” on
my laptop while we all snuggled up in Cami’s bed.
 
(FYI--Glen had to get up at 5:00 to take Spencer to seminary AND he’s doing a triathlon tomorrow, so he was excused from the late-night entertainment).  

Then we dragged Ellie out of bed at 6:30 this morning.  She was a little slow getting moving for the day, but she ended up being a complete trouper by remaining in happy and energetic spirits through the day. 
Her appointment time was at 2:30 this afternoon and we were instructed to give her a dose of Benadryl at 2:15 to make her really tired for the appointment.  I was quite worried about her falling asleep in the 30 minute car ride to the neurologist office, but a little Princess and the Pauper on the DVD player kept her alert the whole way. 

The hour long wait in the neurologist’s office was another story though.  We read books, looked through all the non-kid magazines and picked out yummy looking food we wanted to eat, we marched around the office, we colored, but she REALLY struggled to stay awake at this point.  Finally they finished up with the girl who screamed most of the way through her EEG (hence the long waiting time) and it was time for Ellie’s turn.  

We had prepared Ellie by talking about the procedure and showing her pictures of the wires and such, but in the end I don’t think Ellie cared much about anything except about getting to lay down on the bed in the room.  She was completely compliant and quiet while they attached the dozens of wires and I think the technician was relieved to have an easy-going child after the super high maintenance child right before her.  

While lying there on the bed, it took every effort to keep her awake until all the wires were attached. She had a couple of visible seizures while Renae (the technician) was working on her.   I’m used to being the only one who notices the “episodes” most of the time, so it was interesting to see how tuned into them Renae was.  She even noticed them before I did a couple of times.   

It was my biggest worry through all this that she wouldn’t have any seizures at all for them to see or measure and that we’d be left hanging with an uncertain diagnosis, so I was relieved (I know it sounds weird) when she had three during the half-hour long EEG. 
She was sound asleep in about 2 minutes after the test started and she ended up having two of the seizures in her sleep.  We won’t know anything more about the results until after the neurologist evaluates them, which could be 1-2 weeks. At this point, though, I am happy that the EEG was able to get some good readings that will help them with our diagnosis.  (NOTE:  The EEG results confirmed that she was having petit mal [absence] seizures)

Right now her MRI is scheduled for October 27. (NOTE:  She already had the MRI last week and the results were normal).  We were a little frustrated with the long wait, but we’re hoping the doctor will try to use some pull to get it moved up, if possible.  When I got online to find out if that kind of wait is normal, I did learn that with socialized medicine in the UK that it usually takes 18-22 weeks to get into a neurologist appointment with new seizures and another several weeks for an MRI.  I pray that health care in the US is not going down that path....
(sorry for the political view thrown in there)

Thank you for your prayers in our behalf.  I oscillate between between calm and optimistic about everything and worried sick about what the future may hold for Ellie.  Best case, she still has the MRI, more EEG’s, and medicines to take for several years at least.  Worst case....  I don’t really want to talk about that.  (NOTE:  We're relieved that we don't have to worry about worst case anymore.) 
Love you all!
Lara



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I hope I'm not boring you with all my Ellie posts.  It's such a big part of our lives right now though, that it's hard not to.  Hopefully in the next few weeks we can get back to more non-epilepsy related posts here. 

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Wednesday, October 13, 2010

That's My Boy....










What can I say?  It was "super hero" day at school and it was the first time he willingly let me take a photo of him in a decade. 

Go Super Three Wolf Moon Spence!!!!


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Monday, October 11, 2010

Columbus Day Tradition

Our Christmas Eve program, our fun pre-Thanksgiving FHE lesson, homemade doughnuts on General Conference Sunday, Daddy's crepes for birthday breakfasts, Friday pizza and movie nights,  Top bí mật truyền thống mà chúng tôi sẽ không nói với bạn (haha-you'll have to google translate that one), raspberry picking on Labor Day, a trip to the zoo each voting day, Sunday morning letter writing to grandparents...

....we have some traditions like these
⇈⇈⇈ that we're diehard about, but we have a few others that we're a little looser about. 

Like this one....


apple picking on Columbus Day.

Today ended up being a gorgeous day off of school, so we headed to Crooked Run Orchards in Purcellville for the first time. 


We were a little nervous when we saw how picked over the orchard looked, but then Cami got brave and climbed the tree and got a little bucket brigade going with Adam.  (I was quite proud to capture the apple mid-drop there).  



When no one came to tell us not to climb the trees, it wasn't long before Ellie, Adam, and Emma were soon in the trees as well.  

Spence and his friend Ryan were too cool to pick apples, although the rest of the  kids begged to use their lacrosse sticks to reach the high ones. 


Instead, they entertained themselves by hurling rotten apples at this old dilapidated building that was literally crumbling apart at the foundation.  For as laid back as the management was about tree climbing, the apple hurling was kaboshed in short order.



 The day ended with a pick from the pumpkin "patch" (which was really just a big crate).   



After a mandatory trip to the "john" before heading home, we were entertained by the management's public jab at a local politician who is trying to build a road through the middle of their orchard.


And on the way home, Ellie totally collapsed.  The seizures, themselves, are very exhausting for her, but the new medicine she started on this past weekend completely thrash her.    Poor girl.


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PS  If someone can tell me how to make it so my font doesn't randomly change while I'm typing, I'd highly appreciate it.  It started off with the right font, albeit with the unwanted white highlighting, and at some point changed without provocation to a new one.  Don't know whether to blame stupid Blogger who designed the formatting or the stupid blogger who's typing the post. 

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