Signing Off?

There are probably plenty of things that I could post here on the blog, but I haven't the time or the energy to do so.

The muse has left me, so to speak.

But more than that, Life right now is sort of hectic, with a side of stress. There are many things that others would post to their own blogs (if they had my life, that is), but I have made a conscious decision not to do so.

There are some things that you just don't talk about.

And that may be why I'm not posting hardly at all right now. There are certain things in my life that are consuming my time and mental agility (ability? hmmmm.....), but I'm not talking about it, so what else is there to talk about? The dishes? Homeschool? Hardly. Those things just seem so mundane in the grand scheme of things right now.

What I really need to do is spill my guts out.

But I won't right now---not in this journal.

Which leaves me generally speechless.

***

Time will tell if I start writing again. Feel free to NOT check back every day or once a week like you're used to doing. There are actually free programs that will alert you as to when I've updated (or anything else you like to read, for that matter), and I would suggest you try that if you want to see if I've posted. It'll save you some time. I use one myself.



So for now....





Thanks for reading. Maybe we'll meet here again soon...

The Easy Way

I know I'm not posting very much, but I still took the time to submit to Pediatric Grand Round this week.

See, because I can just send in a link of something I've already written. I don't have to actually post to submit! Ha!

So go ahead....check it out. You'll probably learn something you didn't know before.....

And knowing is half the battle :)

And Many Moooooore!

Awwwwww.....Now that's a face.....

err.....

EYEBALL

that only a good friend could love!

Brighter Than

This morning when I woke up Michaela, she was singing this hymn from church:

We have a hope
Within our souls
Brighter than the perfect day
God has given us His Spirit
And we want the world to hear it
All our doubts are passed away

I'm not so sure why she had this one stuck in her mind. I don't believe we've sung it recently. It was kind of interesting how she started singing before she opened her eyes. And even though she had the words a little messed up ("We have a soul within our soul"), and her speech was garbled (you only would've known what she was singing if you recognized the tune), it was neat to see her enjoying such a good song. She didn't want to stop when I told her to be quiet (ya know, cuz no one else really wanted to be awake at 6), so she whispered it instead.

And of course, because I also know the song, I couldn't help but have the verses run through my head (she was singing the chorus). This one in particular, was the one that came to mind:

Life will end in joyful singing
"I have fought a faithful fight"
Then we'll lay our armor down
And our spirits freed from earthly ties
Shall take their happy flight
To possess a starry crown

I dunno. I think this one is pretty appropriate for a handicapped child with a life-threatening condition. Doncha think?

"Faithful fight" indeed!

Whirlwind Week

It's been over a week since I last posted, and Jen was so kind as to give me the necessary hand-slap to get me back on course. After my last post, it's pretty cruel to not give an update. My apologies.

But Asher is doing well.

Like febrile seizures are want to do, they only come around during a high fever. And as most of you know, high fevers usually only come around during a sickness. Asher got over his within 24 hours of when he had the seizure, for the most part. He hasn't been sick since........ie: no seizures.

I trust that's the last we see of 'em.

***

I had quite the whirlwind week last week. And once you hear about it, you'll know why I haven't posted. In fact, some of you may even scold me! But hey, sometimes you just gotta live on the wild side, ya know?

For starters, last Monday (not to be confused with the Monday just past), my Sister-in-law Jes came into town to visit. Chris' sister is an officer in the Navy, and her schedule is often difficult when it comes to working out visits. She's always been good about it though, and so she decided to pop into town in between her duties. And just because I think she's incredible (and ahem.....she was MY friend before I even looked twice at Chris...hehehehe!), I'm going to tell y'all what she's doing these days. Because I like to brag on her:

She is now a personal aide to the second most powerful Admiral in the United States Navy. That's right folks. MY friend, MY Sister-in-law, was hand-picked by a 3-Star Admiral to work along side him and over his staff for the next 2 years. This guy is in charge of the ENTIRE Atlantic Fleet (which, in case you didn't know, is the biggest in the world). And MY Sister-in-law has this man's ear. WooHoo Jes!

Anyhow......Jes was so nice as to fly in last Monday, rent a car, and stay with us until Wednesday. I purposely kept the news from Chris, and we surprised him. I even got him Tuesday off so he could visit with her. We had fun. It was so sweet for those two to be together. Chris doesn't get to see his family very often.

***

The day after Jes left, Thursday, I got the chance to breathe a little. I didn't have hardly anything to do that day, so I got caught up on the things I put aside while she was here. Unfortunately, Michaela woke up with a bad cough and saying she didn't feel good, so she stayed home from school. She slept pretty much the whole day. By Friday she seemed much better, which was good because she had a doctor's appointment that day.

***

Michaela is now seeing yet another specialist at our Children's Hospital, a psychologist. As she's gotten older, her behavior is becoming further and further removed from what would be considered age appropriate. For example: A five-year-old acting like a three-year-old is not so big a deal compared to a nine-year-old acting like a three-year-old. Get it? So the older she gets, the more unacceptable her actions become. And sometimes, the stuff she does could be harmful to herself or others.

For instance, she's very impulsive. She rarely thinks about what she's doing before she does it. This is a very "two-year-old" way to act. However, she's a lot taller than a two-year-old is. So, even if a normal two-year-old would try to touch the eye on the stove, they really couldn't because of their size. But, Michaela CAN touch that eye, and she very well WOULD. It's the same with going outside. A very young child may WANT to go out, but they can't open the door (or even reach the handle in some cases). Michaela can very easily open the door on a good day, and has absentmindedly walked into the middle of the street, not realizing that her safety is in jeopardy.

This is just one reason why we are seeing a behavioral specialist. In general, Michaela needs to calm down and not be so hyper. It causes her to be out of control, and we have a hard time changing that. Out of control means a lower quality of life for her AND the rest of us. Between this psychologist (who evaluates and treats through counseling) and a psychiatrist (who prescribes medicine), we should have a game plan in the near future.

Unfortunately, this means many visits to the hospital in a short time frame. I think I've been there four times in the last month. And the end is not in sight yet.

Sigh.

So that was last Friday.

***

Then, last Thursday night (so we're backtracking a bit here), my good friend Donna called me to tell me that her middle son Paul had decided to get married on Saturday. The COMING Saturday. Like, IN TWO DAYS. For some reason, Paul wanted to be married really bad. I've always had a soft-spot for Paul, and have enjoyed the times he wanted to hold my babies and tote around my little kids. He would tend to be hardened on his exterior, but you throw those little smiles into his day, and you could tell he was a total mushbug on the inside. I liked seeing that side of him.

Paul had moved to Kentucky and neither I nor his Mama had seen him all that much. To make a long story short, she REALLY wanted to go to the wedding in spite of the circumstances (which are too lengthy to note here), and so did I. But she wasn't sure if it would work out for her to go on such short notice. Saturday morning, the DAY of the wedding, she called me at 8am asking me if I wanted to go with her to KY.

Two hours and twenty minutes later, we were on the road for the 4-5 hour trip up there.

I know, you think I'm crazy.

But it worked out for the kids and Chris, and I took Boo and Gabe. Those two did excellent on the drive. We got up there, went to the wedding, and drove back. Almost exactly 12 hours later, I was home and in bed.

Just in time to sleep before church services the next day.



And THAT'S why I didn't blog last week.

Normal

We didn't realize what was going on last night with Asher.

It seemed like he would wake up crying every few hours. For no apparent reason. Very strange for him, seeing as how he sleeps through the night, and has continually since he was 1 month old. Every time we would go in there to see what was wrong, he would only say, "I want to see you Mama/Dada." We would tell him to go back to sleep, and he would. Not without waking up Gabe, unfortunately, but that's another story.....

Around 6 this morning, it happened again. This crying all of a sudden. I was afraid (and angry) that he would wake up Gabe again, so I went in there and was pretty upset with him. That only made him cry worse. Come to find out, he was very hot to the touch.

Ahhhhh......now I understand what's wrong.....

***

I took him into bed with us for the rest of the morning. It was obvious that he was sick. You know the signs: a lot of sleeping, hardly eats, cries a lot, clinginess. He had all of them. Including a continual fever.

I personally don't worry too much about fevers. They're there for a reason, and I don't like to mess with that. He was fighting off something by having that fever, and as far as I was concerned, it could finish the job so I could have my old Ashey back. And as long as it doesn't get too high, and cause too much discomfort for the child, I tend to NOT medicate for a fever. If I do end up giving them something, it's a bit of Tylenol or Motrin, but again, only if it seems like the child is having a miserable time.

Asher was just spending most of his time resting on the couch, and so we thought we'd just ride this one out. He was clingy, but was fine in my arms. So I held him. A lot.

At some point in the early afternoon, he fell asleep on the couch with Libby. Seeing my new found freedom, I took the opportunity to tie up some loose ends on house chores. In the meantime, Gabe woke up from his nap, Michaela went down for hers, and Chris took the two older boys to town to get some stuff.

Which means, it was just me and Gabe when Ash woke up from his nap about 2:30. He was crying again, just like he had the night before. He wanted me, and I was happy to oblige him, except Gabe was nursing at the time. He wandered over to me, but I told him to go rest on the love seat until I was done with Gabe.

And then it happened.



Asher cried out and started to convulse in a full-blown, grand mal seizure.

Another child.

Seizing.

***

My heart stopped.

And everything that we've been through the past 7 years ran through my mind. That first morning when she was turning blue, the myriad of EEGs, the abilities that just keep melting away......

I gently picked him up while his eyes rolled into the back of his head (how many times have I seen that face?), and his little arms beat rhythmically against my chest (the all-too-familiar thudding sound). I carried him to the kitchen sink and doused a kitchen towel in cool water, remembering the very first time I ever saw a child having a seizure: It was the same exact type situation, a fever induced seizure. The little boy's mother was hysterical, calling his name, while the other adults around him ran for wet blankets and covered him from head to toe. I was doing the same now, covering his hot head (how hot is it? hasn't he been this hot before?) with that towel. The twitching slows.......the eyes come back......the lips turn from blue to white. There's drool on my shirt. He's limp and catching his breath. He's post-ictal now....

I only know that term because I've known it for years....

I've been here before.....

With a pretty little blue eyed girl.....

***

Amazingly enough, even to me, I didn't freak out. Not during the seizure, and not later. And not now. I knew from the second I saw his face contort, that this was not the same as Boo. This was not the terrible monster we've been fighting all these years. I knew, in the back of my mind, where all the years of study and learning are kept, that this was not even Epilepsy.

It was simply a fever-induced seizure. A febrile seizure. A common childhood occurrence.

But even as my mind took that all in, and I took the steps necessary to help my little son, I couldn't help but go through all the feelings I've dreaded. All the years I've worried and cautiously watched every child grow up in my arms---for a twitch, for that cry---to wait until I felt they were past the risky years. Listening, watching, steeling myself against the day that I'd have to watch another child deteriorate. And breathing again, when they thrived and grew and learned

and didn't have a seizure.

Asher won't fall into that category, but I'm not the hysterical mother I thought I would be in light of that fact. I'm not freaking out, and I'm not upset. By the end of the day, he was eating plenty, talking a bunch, and fooling with his siblings. He's sleeping now, and not crying out. His fever broke in the late afternoon, and he's back to normal.

Normal.

He's normal.

And thank God, I'm normal too.





For more information about febrile seizures in children, click here.

One Small Kindness

Well, Michaela has been on the Diazepam (Valium) for a little over a week now.

Things are going......ok. Just OK. I'm pretty sure she's still sleeping instead of seizing through the night. I haven't heard a seizure yet. So that's good. But she's developed a pretty hyper alter ego during the day. More hyper than we've seen her in a long time. I'm sure it has to do with all the sleep she's getting now, but it's seriously getting on my nerves. I mean, I'm not too much of an "in your face" type of gal, and that's ALL she does all day.

She lays on me. She hugs me upteen million times. She waves her hands millimeters from my face. ALL. DAY. LONG.

When she's not doing that, then she's giggling. Incessant giggling. Monotone giggling. Fake sounding giggling. Drive-you-batty-till-you-wanna-cry kinda giggling. Seriously. It's not even close to funny. Or cute.

Sigh.

I feel furthest from "Mom of the Year" at times like this. I get so aggravated with her. Like I must have a short fuse or something--which I don't THINK I do. But she can't help herself. She just does what her short-circuited brain tells her to do. On the other hand, I can't help myself either. These behaviors are irritating. I can't help but be put out by it. Yet, I don't like that the majority of our day together, I'm telling her to "stop", or "go somewhere and play", or "not on my lap Michaela!" It's like we can't get along or something. And I'm left to feel like I'm hurting her feelings. That her Mom doesn't want her around.

***

After a full day of Crazy Girl and Stressed Mom, I was ready for her to go to bed. My ears couldn't take anymore, and my heart was just....sad. I told Chris that I was at my limit, and could he please take care of the rest of her nighttime ritual? I just needed some breathing room.

So he put her to bed. And like most every night Chris does it, she called for me to come say goodnight to her. I was more than happy to oblige, seeing as how it would mean I was "done" for the day, and I could retire to my bed with a good book.

"Goodnight Sweetheart."

"To be with me?"

"No, Honey. Mama's going to bed now. I'll see you in the morning."

"To BE with me.......please."

The last thing I wanted to do was stay with her. After the day we had. I just needed to go to bed. I was so worn out.

"To be with me Mama......"

Sigh. I just couldn't bear the thought of denying her this one small kindness. After the day we had. So I crawled into the bottom bunk with her and laid beside her.

"To be with me?"

"Yes, Sweetheart. Mama's here. Go to sleep now."

And like my Mother would've, I gently rubbed her back and listened to her deep breathing as she settled in. Surprisingly, it was calming for me too. I thought about when she was small, when it was just her and I, and how she had made me a mother. I wondered about her future. About whether or not I would pray for another day like today-----to hear that fake giggle one more time.

"I like that," she whispered.



So do I, Honey. So do I.

Welcome Respite

Michaela has officially started her new drug therapy.

And I was wrong on my previous post. I told you that she was going on "Ativan," but it's Diazepam (or Valium, as it's commonly called) instead. Same stuff in a lot of ways. For our purposes, only difference is the name.

On Thursday, we got to Children's at about 4. By 6 or so, she was hooked up to the vEEG (video electroencephalogram: electrical study of the brain with a video camera to record seizures). They also put a Hep-lock in her hand. That way, if the Valium started to give her trouble, they could give her the antidote quickly. On top of that, she was hooked up to a Pulse-Ox to monitor her heart rate and oxygen saturation levels. This was all standard procedure and mainly for precautionary reasons. The vEEG was basically because she hadn't had one in about 2 years. Since she was going to be there overnight, and most of her seizure activity occurs at night, Chief and I both felt it was a good opportunity to get an update in the brain department.

She got the Valium at about 9 pm.

And would you believe it? That whole night she hardly did anything. Oh, she'd snore a little. She even moved around a little. But other than that, she really just slept. That's very unusual.

Most nights I can hear her seizing. She'll have maybe 3 big ones even before I go to bed. Then I'll wake up in the middle of the night and hear a couple more. And those are just the ones I hear. Nevermind the ones I sleep through.

That night in the hospital, I thought I heard one or two in the early morning. The EEG computer has a little button you can press to make a notation on the study if you see a seizure. That way, the reader can easily find the hot spots over the course of 12 hours of video and brainwave feedback. I pressed it twice. I didn't see her having a seizure, but I thought I heard that all-too-familiar disjointed breathing pattern that happens during one.

At around 8:15 the next morning, Chief came in to look over the recording. After standing there for awhile, watching the recording whiz by and looking for the tell-tale scribble on the screen, he quietly announced that he wasn't seeing anything. I told him about the two markers I left with the button. He looked for a seizure at the same time of the marker.

Nothing.

Not one seizure the whole night.

***

We'll continue to give her the Valium every night for a month. Any longer than that, and her brain will get used to it. If that happens, then the drug will be useless. And like I said in my last post, this whole therapy is in order to give her brain a boost. A much needed break from constant seizure activity. And the thought is, that that rest will have a lasting effect on her seizure control. Even if it's just a few good months, it should improve her quality of life, so it's a welcome respite.

And in my mind, any day without a seizure is a good thing. We'll take all we can get.

And Here We Are

Some things that have been going on around here:


-I finally FINALLY got the cabinet doors up in my kitchen. FINALLY. It looks so much cleaner now. Just makes us want to tackle other projects!

Before

After

-Michaela is still asking to go to the potty. It doesn't happen every day, but every so often, she'll say something like, "We have to go." Which, translated, means, "I have to go...to the bathroom." It took me a while to figure it out. I'd just keep answering her, "No, we're not going anywhere." But she would persist, and it would sink into my ever-tired brain what she was trying to say.

We're not talking potty-training or anything, but it's a nice development. When it happens.


-Michaela will be put on another drug starting next week. This one is a form of valium, called Ativan. For those of you out there who also have a child with LGS, this therapy, using high-dose valium, has helped a lot of other LGS kids in the past. Dr. Gregory Holmes, arguably one of the best pediatric neurologists in the world (and who has seen Michaela), instructed Chief on how to use it safely to help his kids' brains get some relief from the onslaught of seizures. It's taken before bedtime, and appears to help the brain relax. It's only used for a short amount of time. Unfortunately, it can have some pretty serious side effects. Valium is a benzodiazepine that is often used in smaller doses as a relaxant for those suffering with stress or anxiety. It is also used in higher doses to short-circuit a seizure or cluster of seizures. This particular therapy uses the Ativan in a high enough dose to effectively relax you to death. Literally. Like, you stop breathing, you're so relaxed. It's a fine line, but if used correctly, it can be very helpful. Because of this potentially dangerous situation, Michaela will be monitored overnight at the hospital for her first dose. That way, if her respirations are getting too low, they can provide rescue drugs to effectively stop the ativan from hurting her or killing her. That's harsh, but that's what happens. We've done this therapy before, 2 years ago, and it had the desired effect. It helped and didn't hurt. Chief's good. It'll go well, and I'm excited to see her get this boost before school starts.


-We got a sign posted on the road. In a previous post, I mentioned how Boo has snuck out of the house and beelined for the street. Well, when I went to register our cars the other day, I asked the person in charge of roads if there was a way to get a sign up to help protect her in case she got out again. I was told that there is only ONE kind of sign available to alert drivers to children: "DEAF CHILD." They wanted to know if she was deaf. I said she wasn't, but that she was as good as deaf when she was in that frame of mind. They didn't even remotely quibble with me and radioed the sign guy to put up some signs. When I got home later that day, they were already up on both sides of the street. Now THAT's service for ya!



-Caleb turned 6 on Monday! My poor second son doesn't get hardly ANY print on this blog, I realized; much to my shame. I'm not sure why, but he doesn't make headlines for some reason. And that really has to change. Caleb is a very sweet child---always willing to help---and nothing like his brother Noah. For starters, he's dirty blond (as opposed to Noah's dark chocolate brown), and his personality is somewhat clown-ish. Caleb loves to steal the limelight. He's perfectly happy being the center of attention. Unfortunately, this also makes it easier for his Mama to figure out "who-dunnit"......it's usually Caleb.

After a rough couple of weeks last year, we decided to scrap his efforts at school and hold out for this year. So, he'll be in Kindergarten starting next month. Libby is going to attempt to learn by his side, and I hope that his age will give him a bit of an upper hand, and effectually boost his confidence in this area. Thankfully, he's not stupid, but Caleb seems a bit more easy to teach hands-on than with books. I believe this is his year to shine. I changed curriculum, and he should do great.

Happy Birthday to you, Pudge. This is going to be an incredible year for you!


-We just got back from WV, where we were visiting Chris' family. This is a yearly reunion for us at his grandparent's lake home. It is a beautiful spot, and I'm so thankful that my kids get to know and spend time with their great-grandparents. They are truly wonderful people, and I have enjoyed them immensely over the years. I never really knew my great-grandparents. If they were alive when I was, they were unfortunately too aged to spend any quality time with me. Chris' grandparents are in their mid 80's but you'd never know it. His Grandpa played kickball, bocce, washers, and fished with our kids. His Grandma moved furniture (even though I tried to stop her!). They just keep going and going and doing and doing, and are truly examples of older people enjoying life and family. I always miss them when we're not together.

While we were there, Chris' Mom played a trick on Noah. She read about how he has a hard time reading anything other than what he's used to. So, she decided that she would read to the kids every night before bed to try to get him and the others interested in something different. She picked "The Chronicles of Narnia." Well, it worked! Not only were they hooked from the get-go, they simply couldn't get enough of the story and badgered her to read to them practically every time she sat down! We even caught Noah finding a quiet place to read ahead in the book while the others did something else. Her plan was a success, and now the children are listening to the stories from a CD collection of the books we have. I dare say that they're not as good as Grandma though!

Speaking of WV, do you remember what post I wrote from there last year?


-Gabriel is now 6 months old. Can you believe it? How time flies when you're having fun. And we truly are. He's a bundle of joy in every sense of the term. We are living him up to the fullest. I can now see why the youngest gets spoiled---you don't want to let go of them!

Make video montages at www.OneTrueMedia.com

He is actively sprouting his first tooth. I am surprised at how well he is handling the whole thing. He's not terribly fussy about it, and when he does fuss, it doesn't seem as though it's anything other than being tired or hungry. Nothing like being in pain and miserable. Which he must be---if only you saw the awful bulge in his gums! It looks horribly painful! I'm really hoping the tooth will make it's grand entrance tomorrow. It's looked like it's going to bust through for days now.




So, that's what's going on for now. On another note, I can tell now why I'm not posting as much: This takes me too long! This post took me about 2 hours from start to finish. I guess if I didn't put any pics or anything in it, it wouldn't have taken nearly as long, but hey---pictures are the best part! I guess I'll just post every now and then, and try to load them up with a bunch of fun stuff.

We'll see how that goes, I guess.

Kill The Pity

There are children out there a WHOLE lot sicker than Michaela, and I make it a point to remind myself of that. It may sound weird, crazy, or even sick, but I spend time reading other blogs about sick children. Blogs about very sick children. Children who probably won't outlive Michaela, and who suffer many times more than she ever will. Many of them don't have anything like epilepsy. They have monstrous diseases like cancer.

I do this to keep my life in perspective.

I mean, how can I complain when I read about a little girl who's had more surgery than I've had teeth cleanings? Or a little boy who suffers from screaming pain for hours at a time?

Michaela doesn't have to deal with pain in general. I know there are times when she'll have a seizure that will cause her to bite her tongue, or fall on the floor, or whack her arm. And I understand that a seizure in general is pretty hard on the muscles. It appears as if she's having charlie horses. I bet it hurts.

But that's nothing for her. She bounces right back. And her short term memory really helps, I'm sure. Just the fact that she doesn't think like a normal child, is in her favor in this way. She doesn't know what's going on all the time. She forgets the boo-boos quickly enough.

But the others....

Those children that know what's going on. That hurt. That are scared. I read their stories that their parents record in their online journals, and I ache for them. Literally. Like a ball sized rock in the middle of my chest.....constricting.....pulsing. Sometimes the stories bring me to tears.

I can't imagine what their Moms and Dads deal with. I. can't. even. try.

***

So when things are tough for you, or your children, or you're having a hard day, always remember: It could be worse, and there's always a bright side. You're probably pretty healthy. And so are your kids. You're not watching them suffer, and you're problem with work/school/friends will work itself out in time. That's a blessing. We need to be thankful. It doesn't mean that you don't have troubles---we all do---but it could be worse. Right? For most all of us, our problems are the types of issues other people WISH they had.

So tonight, I'm thinking about Maria.

And Sophie.

And Jordan.

And Riley.

And Nathan.

And I'm hugging Michaela a little tighter. And whispering a prayer for these sweet children who's Moms and Dads wish they had seizures to deal with. Instead of terminal cancer or heart transplants.

It makes even my darkest days seem a little bit brighter, and helps me to kill any pity real quick.











****If children who suffer with cancer or other terminal illness capture your heart, like they do mine, then put your heartache to work and donate to a fund or charity that supports children in that situation. St. Jude's Research Hospital is my favorite. Find your favorite, and let them know you want to help in any way you can....big or small****

Lightning Strikes Twice (or More)

It's almost too good to be true.

The other day, I was going about my business and getting stuff done around the house, when I noticed that Michaela was in the bathroom.

Now, just to let you know, Michaela almost NEVER goes into the bathroom of her own accord. I mean, not unless someone is in there, or if she's dragged in. She's technically in there every day, but it's only because she wants me (while I'm using the restroom--arg), or because I'm trying to get her to "go" in something other than a Pull-up.

So anyhow. The other day she was IN the bathroom (and I wasn't!). The light was on, the toilet cover was up, and she was backed up to it and attempting to get her skirt down. I couldn't believe my eyes. I quickly helped her, and she did indeed go to the bathroom. I mean, she did this ALL BY HERSELF. No prompting from me, and almost no help either.

It has been YEARS since she's made any attempt to use the bathroom of her own accord. YEARS since she's recognized that she even HAS to use the restroom. If she ever uses the toilet instead of a diaper, it's only been because we put her on there and hoped for the best. Lots of times we catch her, but if for some reason we don't put her on the potty, she just uses the pullup with no reservation. Any time we ask her if she "has to go" she always answers "No." Always.

But for some unseen reason, she's started doing this.

And it wasn't just a fluke, like I figured. Every day since that day, there's been some initiative on her part to use the bathroom. Whether she's told us she has to go, or she's walked herself in there and started the process herself.

Like this morning: I woke up to her telling Libby, "I'll be riiiight back. I'm going pee on the potty."

And THAT, my dear friends, is better music than any chirping birds.

School's Not Out----Ever

Noah didn't make it. He has 7 chapters left.

Unfortunately, his time management skills aren't up to par. He didn't space the chapters out properly and got bogged down. I tried to tell him, but he did it his own way.

Actually, I'm kinda glad he didn't make it. When I went online to check out the tickets and times, I found out that they were asking WAY more than I was expecting to pay. The production was being put on at a local high school, and I wrongfully assumed that the tickets would reflect high school play prices. But come to find out, a professional troupe was only using the high school's facilities---and charging professional fees. I would've paid it if he completed the book, but I was irritated that I didn't find that out BEFORE the challenge!

I guess we both learned some valuable lessons this week.

Local Restaurant Review

Last night, Chris and I went out to eat with some of our best friends. They had been to the restaurant before, and had told us how much they liked it. When they said they were going again for the third time, we jumped on their bandwagon and crashed their party.

It was well worth it!

The place is new, and it's called "Chef's Table." Located in booming Jones Valley, this little restaurant packs a big punch with it's tapas style menu. We made reservations ahead of time. This is encouraged.

The first thing you notice as you walk in is the rich color scheme. Deep red walls and black ceiling, scattered artwork of various shapes, styles, and methods, and of course, accented lighting (including candlelight); all help create a warm and anticipating experience. The kitchen is open for all to see, and there is a black and white tiled bar surrounding it for patrons to watch their food being prepared. We were seated in a black padded booth. That suited me just fine, however, I'd like to try eating at the bar in the future.

Our waitress' name was Addy. I am convinced she made the whole experience an "A+"---as the server should, in my opinion. Timely, cheerful, and spunky, Addy was never rushed or overbearing. She was always around if we needed her, but not in our face. She knew what was in the various dishes (one of our foursome had a nut allergy to watch out for). She also took away the wine menu promptly after we obviously didn't look at it (we don't drink). I thought that was classy and very observant of her. My most favorite thing about being served by Addy, was the fact that she KNEW the food was good and didn't have any trouble complimenting it. In fact, she once said, "Now, wasn't that just awful?" I thought that was funny and very confident of her. I like a server that's entertaining as well as helpful and prompt. Good job Addy.

Now to the food:

Of course the drinks were served first, but there was already ice water on the table. I just stuck with that. One of us ordered Perrier, and it was served with both a lemon and lime slice. It was said that that was an excellent compliment to the drink.

Next, came a small appetizer. There are no appetizer choices like many mainstream establishments. You are served a small bowl of olives in a dressing. Laying on top of that are small chunks of salt-encrusted fresh bread. Jumbo sized spanish olives (they have a certain name, but I am not recalling it), black olives, reddish greek olives, sun-dried tomatoes, onion slices, and jalepenos basked in a maarinade of olive oil touched with perhaps some spices, or at the very least, vinegar or wine. I tried all but the jalepeno. It was awesome. We asked for an extra serving of bread.

With a tapas style menu, you are encouraged to order a variety of different main dishes. These do not come in entree sized portions, so you wouldn't want to stick with just one dish (unless you were a VERY small eater). Between the 4 of us, we made 5 selections:

Goat Cheese and Marinara Fondue with honey toast points
Stuffed Quail with andouille-mushroom hash & chipotle honey bbq sauce
Asian Chicken with mushrooms, onions, mandarin oranges and tangy soy-ginger sauce
Smoked Chicken Ravioli with mushrooms, scallions and a hazelnut cream sauce
and
Beef Tip Pot Pie with potatoes, carrots, peas, mushrooms and carmelized shallot demi

We also chose 2 side dishes:

Brie Macaroni and Cheese
and
Roasted Garlic Mashed Potatoes

There was not one thing ordered that I didn't like. The fondue was more of an appetizer in it's presentation. You dipped honey flavored toasted bread in a marinara sauce that had warm balls of sweet goat cheese. Excellent. The stuffed quail came as a whole stuffed bird---perhaps 1/30th of what you'd expect your Thanksgiving turkey to look like. It was moist and tender. The stuffing was more "al dente" than I was expecting or would have wanted, but it tasted good. The Asian chicken was one of my favorites. It was chunks of chicken with the vegetables and a hearty amount of sauce. Very tasty! The ravioli was by far the best. The stuffing was incredible, and the sauce was sweet---a combination none of us was expecting, but kept you wanting more. The pot pie was perhaps my least favorite of the evening, but even that was good for a pot pie.

Both sides melted in your mouth, and I'm sure I will order both again the next time I go. They were outstanding!

After the food was gone, all of us commented on the "nicely satisfied" feeling we all had. By the look of the small portions, I was a bit skeptical that I wouldn't need to order more. However, between the olive appetizer and the main dishes, I was comfortable and happy with the amount of food. I was even willing to order dessert, which came as part of the "package" ordering (5 main courses, and 6 choices from the sides, salad, soup, and dessert menu).

ALL of the desserts were highly drool worthy! I settled on a brownie with ice cream on the side, and regretably couldn't finish it. It was very rich and wonderful in every sense of the word. It was infused with coffee flavoring and nuts, two of my favorite brownie ingredients. The presentation was top notch, with drizzled sauce and a mint sprig in the ice cream, which was also dusted with cinnamon. We had coffee with our dessert. It was strong and freshly brewed. The cream was served in a small pitcher rather than in little plastic cups. Again, they made every attempt to be classy and worth every penny.

Speaking of money, I thought the food was very fairly priced. You had the option of ordering dishes individually, or in a package deal. There is the 2-person package, which consists of 3 main dishes, and 5 sides (again, that includes dessert, if you choose); or the 3-person package like we chose. The 3-person fed all four of us well. The drinks were not included in the package, as would be expected.

For appetizer, main meal, dessert, drinks and tip, Chris and I spent just under $50. That seems outrageous for 2 people, but we hardly ever get dessert and coffee when we go out to eat. I'm also fairly confident that Chris tipped Addy at 20% or more. So, all in all, the food is not priced extraordinarily high, and you get an exceptional dining experience.

We WILL be going back to the Chef's Table as soon as humanly possible. Maybe we'll see some of you there!

The Challenge

It's so nice to have a child in the house who can read. Well, unless if you consider the fact that we can't spell things out in front of him anymore...

Me: "Hey Chris....do you want me to pick up some I-C-E C-R-E-A-M at the store?"

Noah: "Yeah! Get some strawberry!"

Arggggggg.

***

Anyhow. So, Noah can read, and has been reading for a couple of years now. Unfortunately, he's like his mother, and terribly picky on what will grace his shelves. Even though he reads at a 4th grade level, he insists on reading books designed for 2nd graders. And not just ANY 2nd grade book. No. He only really likes TWO kinds:

The Magic Tree House series, or the Jigsaw Jones series.

This is so frustrating to me. I love to read. I have read so many different books and kinds of books in my lifetime. It just bloats my brain to have to fight with him to get him to read books I KNOW he'll like.

Like The Hardy Boys. Or Charlotte's Web. Or The Black Stallion. I mean, AWESOME books! No, he'd rather stick with what he knows, even if it means reading the same book 3 times in one summer.

On one hand, I'm thankful that he's reading at all, and enjoys to read what he does. But this silly fetish just limits things so much. I mean, I go yardsale-ing, and I find great books for a stinkin' quarter, and all they do is sit on the shelf. Sooooooo annoying.

But I keep trying. As it is, I had to FORCE him to try the Magic Tree House books. He cried over that. Me making him read those. Now, I can't get his nose out of them! He loves them so much. Over his reading career, we've had a few of those, "I told you so" moments. Where he'd practically light up at the end of the story because he liked it after all. Through the dried tears he'd be beaming.

I try to remind him of this, but it never works. He just keeps fighting me.

The latest book ordeal is over The Secret Garden. A classic. Man, I love the classics. It's a good one. Why won't he give it a try? He's all but about to loose his composure over a GOOD BOOK!

***

So. I gave him a challenge.

Come to find out (thanks Aunt Becky!), The Secret Garden will be performed at a high school a couple of towns over. It runs this week and next week. Which means, if he started now, he would have a week to finish the book before the play.

He can do it. I know he can.

And we told him that if he gets through it before next Thursday, then we will take him to the play.

Noah loves to go out with me and Chris.

Noah loves to go to plays.

It's the perfect challenge.

We really hyped it up too. You could see his little mind just reeling from the peer pressure on this thing. He hated the idea of reading the book, but, but, the reward was soooo huge! You could see the battle raging right before your eyes. At first he said he wouldn't read it. Then I saw him pick it up. Then he put it down. Then he acted like it wasn't there. Then....

He went to bed and put on his book light.




......I really hope we go to the play.....

Me Likey!

That's something Jeni always says, and I've sorta adopted it.

Today, I had a "Me Likey!" experience.

***

Ever since I moved to Alabama, I've worked hard to balance my checking account every statement. For some unknown reason, I never could get it right when I lived in NH. It bothered me to no end; I would write out every transaction for 6 months by hand to find the errors, to no avail.

Since we started all over when we moved here, I made sure to get the account balanced from the get-go. Thankfully, I haven't had a problem since moving, and have successfully balanced my checking account to the penny every month.

That's a good feeling!

I owe a lot of it to the accounting software I use, Microsoft Money, and the fact that we hardly use cash. On top of that, Chris is very diligent to keep his debit slips for me to record with. So then, every so often, I go through all the slips and my duplicate checks, and enter all the info into my electronic register. It automatically gives me the total.

I also use it to keep track of what bills are due when. That's a virtual lifesaver.

Then, when my monthly statement comes in, I just match it up with the computer. It comes out right every time.

***

Well, one day, while I was out yard sale-ing, I picked up a copy of the UPDATED version of MS Money. For a quarter. Hoo-ahhh!

Today, I installed it.

And this new be-fangled version has a VERY nice little upgrade:

It will self-balance my account.

How? you say? Well, all you have to do is log on to your bank account online (anyone out there not checking your current balance at your bank's website? You're the minority!). Then, you can either download a copy of your online statement to Money from the website, or Money will do it for you from the program itself. Of course you have to be online to do this, but most people are these days.

Once the document has been downloaded into the Money program, it will match up the debits and credits already recorded in the program, with the ones that the bank shows. If you forgot to record a specific transaction, you can click a button and Money will automatically insert it into your register. If it can't tell if the bank's record is the same as yours (say, you record it as "Walmart" and the bank records it as "Wal-mart #233"), it will ask you if you want to accept that record as the same thing. Once you click the "accept" button, it is reconciled.

In other words, instead of constantly matching up your online balance with the bank to the account register in Money (by clicking back and forth between pages), the program will now do it for you. Which also means that I don't have to balance a month's worth of transactions when I get my paper statement. Sheesh, I don't even NEED a paper statement anymore! I just download a copy of the bank's records of my account, and Money will do the rest----instant balanced checkbook!

Oh yeah......me likey very much!

What's Up......And Some Pics

Bible School will be officially over tomorrow night. We'll be having a closing program at 7 PM, and once that's over, I'll be able to slow down for a little bit.

Chris' birthday was yesterday, and because of Bible School and the fact that we had church last night, we didn't celebrate it yet. He's DYING to find out what I got him, especially since I've been rubbing it in for about 6 months now (hehehehe!), but I won't give it to him until we celebrate his birthday. That'll probably happen next week.

In other news, we are planning on making arrangements to get some fencing this weekend. Make- A-Wish categorically refused to erect a fence as Michaela's wish, so we're going to try to do it for her ourselves. She has absentmindedly walked into the middle of the road twice in the past month when we took our eyes off of her momentarily (we're talking a VERY short time frame here--like 5 minutes? 3? something miniscule like that). Thank God there were no cars coming speeding around the corner. Which reminds me: does anyone know how to get the local government to erect signs that alert oncoming traffic to a handicapped child? I've always thought that would be something good to have. Not that it would keep the drivers from speeding, but maybe it would help them realize the potential problem. Or, at the very least, understand why there is a child wandering in the middle of the street.

That sounds really bad. Like I'm totally irresponsible or something. But it's not me, it's her. She's sneaky; and I am one person. There was even a time when TWO of us were keeping an eye on her, and she escaped out the door of the house and beelined for the road. Scary stuff, I know. We need to invest in some more security for her.

Hence, the fence.

I'm kind of excited about the whole thing. I've wanted one for a good long time. Hopefully it will all go smoothly. We've never put up a fence before....

***

Watching the neighbor bush-hog his field
A sure sign of summer in the country

"Bubba" loves us, this we know
For he always tells us so
Kisses, hugs, and playtime too
Oh, dear Bubba, we love you!

They're just babies....
And I wish I could hold them like this forever.....

Man, am I glad I have a digital camera........................sigh..........................

Day 30: Worn OUT

3o days dun wore me out.

i need a break........

stay tuned.......

Day 29.5: Blog Fodder

Day 29: I Don't Do Weekends

This is painfully obvious, doncha think? Throughout this entire 30 day blogfest, I haven't been able to keep up on weekends. The only reason I'm posting now (this being Saturday) is because I feel bad about missing Friday.

But Friday's gone, and I can't get it back.

Soon, I will be bouncing from one thing to the other: taking care of the children like I do everday, but on top of that, trying to get a project or two accomplished while Chris is home. Sunday is just as busy with the two services we attend. So, I don't relax on the weekends.

I've already been out yard saling. Today, we're going to try to get some of my cabinets painted and put up.

If I can get some stuff done around here, it'll be worth not blogging!

But I'm not gone for long ;)

Day 28: 2.8

200 Things About Me:








Just kidding!

But this IS my 200th post. My "Bi-Centennial" if you will. Gosh, that seems like a lot of writing, huh?

Let's see, what's the numbers on that?

My first post was on November 21, 2005. So, 365 days to November 21, 2006. Then there were 40 more days in 2006, so that brings it up to 405 days. Then we add the 151 for 2007, and that brings the total to 556 days since I started blogging.

Then we divide that by 200, which gives us 2.78.

Which means I post every 2.78 days, on average. Or, rounded up, is 2.8 (and lookee there! today is day "28"----how cool is that?)

Ha! And y'all thought I was slackin'. Heh! Every 2-3 days or so is not so shabby!

Well, until you look at the month of April. That's not a good picture of my blogging prowess at all. So, let's just forget about April and focus on 2.8, ok?

And hopefully, after this little 30 day stint thing, I can make the numbers even better!

Day 27: Stinky Shoes To The Rescue!

My sons are fascinated with knives. One of their best friends got a pocketknife (purposely dulled, by the way) for Christmas, and ever since then, Chris and I haven't heard the end of it. Much ado about knives, and when they're going to get one, and why can't they have one, yadda yadda yadda.

So tonight, Caleb says to us in the car, "[Friend] said he's going to make me a knife with his knife."

To which, both Chris and I answered, " Uhhhh, no he's not!"

Caleb: "Just out of a popsicle stick. Just pretend."

Us: "Uhhhh, the answer is still, NO."

Boys in unison: "Why? It's not gonna be reeeeeeal."

Which lead both of us "parental/unfair/meanie" type people to go into a long dissertation on the problems of "fake" (yet, still so wonderfully SHARP) knives, and how they could still get hurt (seeing how they get hurt plenty without the aid of fake knives), and how they're just plain not allowed to own such a dasterdly piece of equipment until they're at least 42.

But me, knowing the importance of these boyish type things, and the goodness of pretend play, felt the need to smooth over the hurt feelings and very-hard-to-suppress bad attitudes my boys were on the verge of displaying. So I told them that they should use something else instead of a real knife. Something to ACT as a knife......pretending and all.

Noah: "Like what? What could we use for a knife that would be fun?"

Me: ((Thinking hard)) "Uhhhhh, you......could........use a............................shoe!"

Chris pretty much lost it.

***

Unfortunately, the little guys just wouldn't drop the issue, and Chris had to lay down the law on them. Caleb got annoyed, but Noah started tearing up. I hate seeing him cry.

So I got out my funny voice.....

And little did they know......

I had SHOES in my purse!

Asher had taken off his very stinky shoes after church, and I collected them before we left. Doing my best Zorro imitation, I proceeded to take out my "knives" and show those boys a thing or two about having some fun!

We had a royal swashbuckling good time out there on the front lawn. Unfortunately, my sons were pitifully unarmed, and I won the match by a long shot.

And my boys learned that shoes make pretty good swords.

And stinky ones are double-edged!

Day 26: The Blogging Day That Wasn't

I sat down to blog yesterday, but read my email instead. Then I read all of YOUR blogs. Then I forgot to post.

Yesterday was Gabe's 5 month birthday. I got one picture of Asher that I was going to use, but I forgot to take pics of Gabe. Then he went to bed.

Man, I'm Oh-for-Two!

Perhaps I'll get on it later.....at least the pics, if nothing else! Hope y'all had a relaxing and enjoyable Memorial Day. Did anyone think of going to the VA or to a parade yesterday? I was thinking of taking the kids to the nearest VA hospital and then maybe a cemetery. Unfortunately, my best intentions just stayed intentions. Much to my irritation with myself!

"If at first you don't succeed, try, try again!"

In other words, hopefully next year! I'd love to hear how y'all spent the day though~!

Day 25: Remember

I am like most Americans....

Spoiled.

We have it so good, that we often forget what it's like to have it bad.

September 11th was a cruel reminder of what "bad" is. I don't intend to forget it ever again.

Here's a slideshow type presentation, to help us remember why we have a day called Memorial Day. It wasn't our present war in Iraq that put this holiday on the calendar, but it was a war just like it.....

.....a war where brave men and women lost their lives to protect our right to forget the bad.

And on a personal note:

A special thanks goes out to my beloved Brother-in-Law and Sister-in-Law. They are both active in the military. He is an Army Reservist, who has done a tour in Iraq



And she is a Naval Officer who has been in the Persian Gulf as well.



I can't say enough how proud I am of both of you, Jon and Jes. I'm so glad you're safe in the States....

Day 24: Back On Track

Just a quick note to let everyone know that Michaela had a pretty good day today! She played with toys all day, revelling in this little item and that, making her masterpieces tirelessly.

I also took her outside for a short time, because she wanted to swing. Yes, she swings very well when she's doing well. That didn't last long though, because her brothers and sister were playing around in the new kiddie pool I got the other day. This is a source of high interest to her. Although she doesn't want to be in the pool herself, she seems to really love watching her siblings splash around.

I tried to put her in the very shallow (we're talking like, 18 inches here) water yesterday, but that didn't fly so well. Do you know the sound that an aggravated chimpanzee makes? Yup. That's what we got. She wouldn't have it. The most water she had interaction with was putting her feet in.

But she loves to watch. And she loves to walk around the pool. And she really likes to rip up grass and throw it in. It is especially funny when she starts demanding the other kids to "Swim!"---sharply pointing to the water. Man, if I could just get HER to "swim." I think the water would be great for her.

I might try again next week. Maybe if I only put a couple of inches in. We could start with that, and add a little every time. That might help her get used to it.

Overall, her slump is past, and she's back to her normal self. Just in time for some "pre-sweltering heat" summer fun and Vacation Bible School. What a good feeling!

Day 23: Friday Night Special

Krispy Kreme doughnuts and sweet baby smiles

Mmmmm Mmmmmm

Day 22: Some Days, 2 Brains Would Be Nice

The moment you've all been waiting for!

Chief called this morning....

***

Me: Hello?

Chief: Good morning!

Me: Oh, hey Chief! How are you?

Chief: Good. Good. Soooooo, her labs came back fine!

Me: Oh yeah? (obviously disappointed)

Chief: Yeah! Uh......that's good, right?

Me: Well, yeah, but I was kinda hoping that they would show a reason for all these ups and downs....you know.

Chief: Well, yeah (trying to empathize for my sake), but at least she's not in liver failure!


STOP.


I HAD TOTALLY FORGOTTEN THAT THE LABS WERE TO CHECK FOR LIVER FAILURE.


And here I was, HOPING they would come back "not normal!" AHHHHHHH!

I was mistakenly thinking that the labs were checking the level of the Felbamate in her system. Which, if they WERE off, that would show that perhaps the dosing needed to be changed. I also knew that they were doing a CBC, which I was thinking would show an infection----which might be altering her balance. All of these things are very fixable, and in my limited knowledge, might have helped her "even out" a bit. Ya know, a good thing.

I completely forgot that the labs are to make sure she's not in acute liver failure (a side effect of the Felbamate). A very bad thing!

***

Poor Chief. We went through an entire phone conversation without me even realizing the implications of those Good Labs. Chris reminded me when I called to give him the news.

But once again, Chief smoothed my ruffled feathers and let me know that she's just doing what LGS kids do. Unfortunately, it seems like a lot of the kids on the LGS message board are more "static" in their conditions---meaning, they don't seem to have these ups and downs like Michaela. But, that's just a slice of the population. I admitted that, that I didn't know of TONS of Lennox-Gastaut kids, so he confirmed that yes, people with broken brains have these fluctuations quite frequently. Not just with LGS, but with Parkinsons, and Alzheimers (at least, I think that's what he said). And, a lot of the kids I know, have many more neurological and physical issues than Michaela. Most of them don't ever walk or talk. So, I guess, if she's walking and talking PART of the time, that's better than some.

And she's been doing better the last couple of days. The lows are not so low. She's been eating somewhat normally.

***

I need a new game plan guys. If, for some reason, I start to get frustrated and bothered by her condition, then y'all need to remind me of this. That it's normal for her. You can read to me my own posts where I talk about how I understand her "new normal"--how I don't freak out anymore.

Well, to a point, that's true. I don't generally freak out at all, and I didn't this time. Yet, she was doing some kinda weird stuff that she hadn't done before. But really, if I had just stepped out of my own brain for a moment, I would've seen from the outside, that it wasn't that awful. Give it a day (or after the phone call to the ped? right?), and she would've evened out. She would've been back in the comfort zone--the place where I understand what's going on, and don't think of different possibilities of what it could be.

And I talked to my Mom about this too. I think part of my problem is that I'm a product of human nature. Human nature tells us that if there's an effect, there's a cause. In Boo's case, I'm constantly thinking, "If she's changing in her status, then there MUST be a trigger." Most anyone would probably think that. But with Michaela, that's just not the case most every time.

I have to break the cycle. I have to stop thinking I did something to cause her ups and downs.

But when DO I get alarmed? When DO I start to wonder if something needs to be addressed or checked into?

Chief said to definately call if she doesn't wake up without a lot of trouble. I told him that I'd probably call an ambulance in that case!

But I guess that's just the way it is. Not that he minds if I call for things like this. I've always known that he doesn't mind answering my questions or addressing my fears. But, I keep feeling like we're missing part of the puzzle, and I keep trying to find it. But it's not there. Her brain just doesn't HAVE all the pieces.

I need to adjust......again. To not only not freak out when she can't eat or walk, but to also stop looking for that piece, that trigger that's not there.

So, if I seem to be forgetting my new normal someday.....be a good bloggy friend and let me borrow your brain for a while? OK?

Sometimes mine just gets on overdrive!

Day 21: Delivery Confirmation

I don't like giving the wrong impression, so let me clarify.

Dana commented the other day, about how "there's a power greater than Murphy." To which, I wholeheartedly agree. And Dana knows me personally and knew what I meant, but for those of you who don't, let me just say:

Be it far from me to leave God out of the equation!

I don't like to give the impression that I'm "flying solo, " or relying on my own strength when it comes to any facet of life. Especially Michaela's situation. Because I'm not. Plain and simple. I wouldn't even have a BLOG if that were the case, because I would've lost my mind in anger and sorrow a long time ago. I'm sure I wouldn't have any mental capacity for it. And probably no desire at all.

No. The reason I do as well as I do is because of God, and how He's taken care of us and kept a hand on our difficulties in life. And the reason my blog is named what it is, is because I know that no matter what happens in life, I've got it pri-tee good. Doing it God's way, that is.

But I like words, and I like to play around with them. I love puns and riddles and use them frequently in my writing. I especially like to change commonly understood phrasing (like the title of a song, for instance), into something that suits my purpose, giving it a double meaning. I think it's fun and clever. I like reading stuff like that, so I use it as well.

So, when I use a phrase referring to something like "Murphy's Law", it's NOT that I'm disregarding "God's Law", it's just that I'm using phrasing that everyone knows and understands (who doesn't know what Murphy's Law is???), to get my point across. I could've just wrote about how uncanny it is that children seem to OFTEN do better right AFTER you call the doctor, but I liked the twist up of using Murphy's Law better.

And while we're on the subject:

I've mentioned before why I don't invoke the name of God in my writing more than I do. It is because I have a strong disdain for cheap talk. Not that I would be talking cheap, but so many people do. Especially when it comes to their religeon. I've met more than my fair share of religeous "gushers" in my short 30 years, and I've also found that a fair majority of them are not what they appear to be.

They're not walking it, they're just talking it.

I hate that.

So, you just won't find me gushing on this site. I'd rather you make the connection from the way I live, than from what I tell you. So then, when I DO bring it up, you won't be surprised. There are just too many instances in this world (and especially here, in the Bible Belt, where over 90% of the people claim to be a Christian), where the opposite is true: A person might be surprised to find OUT someone is a Christian, after they see their daily life. That's just as bad as the gushers who put "Praise the Lord" at the end of every sentance, but are hanging out at the girlie bar on Saturday night.

Ok. But I don't do that. Yet, I still feel as though people shy away from people who gush incessantly. Like, they don't trust someone who talks like that. Maybe it's just me. Maybe I just don't trust them. And that's fine too. Like I said, I've been around people like that, only to be burnt by my expectations later. So I prefer to handle myself differently.


But God's HAS been good to me. Let me show you how....





PS: this post is NOT directed at any one of my readers. If you think I'm talking about you, I'm probably not. If you think you fall into the category of a "gusher", then analyze yourself and decide if you're just talking cheap. If you're not, then you don't qualify. Handle yourself the way you feel you should, and so will I :)

Day 20: Specifics?........Please?

Thank you to everyone for your kind words, phone calls, babysitting offers.....I can't say enough how much those little things are appreciated.

***

Boo's day today was similar to yesterday. I tube fed her this morning, but she was able to eat a McDonald's parfait for lunch. Then she ate dinner like normal.

She barely talked this morning. Had a hard time walking. Wouldn't (couldn't?) go to the bathroom until late afternoon. Mainly just sat and drooled. Until mid-afternoon. Then she snapped out of the funk, talked fairly normal, and ran around being silly. Chris doesn't think this evening was as good as last evening, but it was still night and day from the mornings.

I don't know what to make of it.

Her left eye still has the blood spot, her hands mottled up a bit this morning, and instead of tilting backwards, she tilted sideways. I brought her to her appointment with the good pediatrician doctor, and he really didn't have much to say about it. Said he would call Chief. Since then, I haven't heard a thing. They're probably playing phone tag.

I had her lab work done. I trust I'll get an email tomorrow letting me know the results. Normally, the results are perfectly fine. No problems there. I guess that's a good thing.

But then, what is this? What's going on with her? I would be lying if I said I would be glad if the results came back fine. I would like to see a discrepency for once. A reason for the roller-coaster ride that is her daily life right now. If the labs are good, then what's the problem? Why is she so varied neurologically, if there's nothing askew?

Chief usually just chalks it up to "epileptic encephalopathy." Just her condition. Just the way it is.

OK. I can see where he's coming from. I understand why he tells me that, and why that's all he can generally offer me for an explanation. I mean, sheesh, he's a doctor---not God. He doesn't have to know everything, or have all the answers. But honestly, I like answers. I really do. Specific answers, specifically. I've come a long way as far as not having to know everything, honestly, I have. But this just irritates me. It's so frustrating. To see your kid go through 2 totally opposite ends of the spectrum---for example: in consciousness, they have a scale of 1-15. 1 means you're a total comatose vegetable, and 15 means you're normal. If you're reading this, you're a 15 or so. Michaela will fly from, let's just say, 6 to 11, in the span of hours. HOURS. And that has been happening on a DAILY basis. To see that, and hear that it's just "par for the course," is soooo hard to take in. It just makes MORE sense that something's not right.

But I haven't changed her meds, her food, her schedule, her toothpaste even! And yet she STILL vascillates between two extremes. What in the world is going on?

OK. Here's the point: WHAT am I doing wrong here?

She lives with me, I take care of her. Why is my child falling off the cliff one moment, and being normal enough to warrant punishment the next?

Can she not handle Crest toothpaste? Is the laundry detergent soaking into her skin and messing her up? Am I talking too loud? Is it sugar? Milk? The water? The dog? The weather?

Of course my first impression is the meds. But the labs come back fine!

Do you see my problem here?



We'll see if I get any answers tomorrow....

Day 19: Murphy Who?

The saga continues.....


Boo continued to jabber for a good long while last night. I put her to bed around 8, hoping that she would crash after such a strenuous day. Usually, she crashes after a normal day. I was looking forward to the peace and quiet.

It wasn't to be. Poor Boo couldn't stop talking even though she clearly wanted to. She called out to me endlessly. I tried to ignore her at first, help her realize that it was bedtime, the time to SLEEP. But her voice quickly became worried and hectic. And still she was mostly saying "hi!"

So I went to her room to check on her, maybe calm her down some. She practically starts to cry (for those who don't know, Michaela doesn't cry unless she's hurt. Her emotions are pretty mixed up, and she almost NEVER cries due to sadness, fear, or remorse.) and her whole face is contorted in an awful sadness. It totally breaks my heart.

"Mom!" she cries. "Mom! Be with me!"

So I try to sooth her and calm her down and help her stop the cycle. She becomes more comfortable, more calm, but simply cannot stop. By now, she's even whispering random conglomerations of "Mom", "Hi", and "Be with me."

Something similar to this had happened to her sometime last year. I had called Chief's office hoping to find out what to do. I didn't get Chief, but a foreign resident who couldn't quite figure out what the problem was. Once he did (after much pain on my part), he told me to give her Benedryl. Benedryl?!?! I about croaked. She didn't have hives! What in the world???? Benedryl?

But it worked.

So last night, I gave her Benedryl.

And she finally conked out.

***

This morning, I found her sitting on the floor in her room when I went to get her up for school. She was seemingly having a hard time sitting up straight. She would start to slump over, but catch herself before she fell all the way. I sat on the floor and looked at her. She was not talking. She hardly noticed me. Her hands and arms were contracting with little tremors. She was drooling.

I picked her up, put her back to bed, and kissed her on the cheek.

And I called the bus to tell them she wasn't going to school.

***

She's had a pretty rough day overall. She couldn't eat, so I hooked her up to the feeding pump. Funny thing was, I gave her some crayons, hoping she would color so she wouldn't be so bored in her wheelchair.

She ate the crayon. Purple with glitter. Gotta love it.

Then, when I couldn't get her to stay in the chair anymore (because she was growing very agitated, and you don't want a non-verbal, feeding tube bound child to get agitated. It can get loud and messy....), I let her walk around. But her walking was funny. It was like she was falling backwards constantly. Either that or her own private hurricane was pushing her back.

After a while, she was grunting under the strain of walking like that. She couldn't even sit without falling backwards. I would lay her down to give her muscles a break, but she didn't want to "sleep", so she popped right back up and resumed her awkward walk.

In the middle of this, I notice her hands are turning mottled and reddish-purple. Like there are rubber bands on her wrists or something. It wasn't extreme or anything, but not quite common either. I thought maybe her hands were cold. They were warm to hot. It mainly occured when she was standing up, and would dissipate when she sat down.

And the last couple of days, I've noticed that her eyes are bloodshot. Not pink-eye, mind you. Just dotted or splotchy with broken blood vessels. I assumed it was from the extra seizures I figured she was having in her sleep. Today, her left eye had a perfect dot of blood, while the right was blotted. Weird.

So, in light of all these strange symptoms, I called Chief. Just to be on the safe side. As much as I've seen her bad days, this was the most unusual bad day she's ever had.

Chief's wonderful nurse Barbara tells me to go get some labs done, and see if she can be seen by our Pediatrician. Maybe Chief's thinking what I'm thinking? Inner ear or something like that? I make the appointment. It's for tomorrow at 10.

***

Would you believe me if I told you that approximately 2 hours after I make the appointment, Michaela starts acting normal again?

Talking. Eating. Walking normal (for her).

Yeah, she's still a little slow, and she can't do everything she normally would, but NOTHING like she was the majority of the day. Just nothing. In fact, she perked up significantly when her Daddy walked in the door. She talked his ear off with "Hi's" and "I love you's" and "You're home's", all the while, hugging his guts out and planting big slobbery wet kisses.

She continued to improve through the evening. She was determined to hug both of us endlessly.

She played like she normally would.

She ate her dinner at the table with the rest of us.

She went to bed, and right to sleep. Just like she usually does.

***

I think Murphy's Law came into affect a little today. You know, the one that says, "If your child has a problem, they will ineveitably "snap out of it" right after you call the doctor, leaving you looking like a hypochondriac parent."

Well, chalk one up for "Murphy, " but I'm still keeping that appointment tomorrow.

I want to get to the bottom of this.

Stay tuned.

Day 18: Tails We'll Try Again

Michaela has had a weird couple of days. Absence seizures up to whazoo. Then plenty of the Wham Bang grand mal types when she's sleeping. This can sometimes leave her brain in a state of perpetual......perpetual-ness. Repetition. Continuous continuing.

Broken record syndrome.

Yesterday, it was some strange arm flapping, air guitar-ish type movements. Constantly. Over and over. And she seemed to like it. At least, she laughed when she did it. But then it appeared to overcome her, and she couldn't stop. So she'd walk around in circles, stopping avery 15 seconds or so to jam to the Santana in her head. Her poor arms looked like they would fall off after an hour long set.

Today, it's the word "Hi." It has taken me all day to figure out that she can't say much else. Other times when this has happened, Chris and I thought that she was just liking to say the word. Or that she forgot the response we gave her. But today.....today I figured out what's going on:

Oral aphasia.

She's responding to me, communicating with me, but only capable of using the word "Hi" (or the 2-3 other phrases that pop out intermittantly).

I was WONDERING why sometimes when she would come up to me and say "Hi", she would be to the point of tears....

I wasn't GETTING IT.

I wasn't reading between the lines.

Not that some of it ISN'T mindless repetition. I'm sure it's a bit of that as well. She's just saying hi too often for it to be communication all the time. But the times she would come up to me--addressing me, engaging me--it's those times where I'm thinking she's bogged down by the broken link in her brain. Because, if I hit the right answer, or ask the question she's dying for me to ask her, her whole face will light up and she'll blurt out "YAH!"

And poor thing, you'd think she was going to cry with joy when we finally respond correctly. She'll even hug us like we're leaving forever.

And I just figured this out.

***

Yesterday, she was playing Santana.....

Today, she's living it.....

Everytime I try to talk to you
I get tongue-tied
Turns out that everything I say to you
Comes out wrong and never comes out right

"Why Don't You and I" by Carlos Santana

Poor Boo. Always a roadblock. And sometimes, there's not even a road.

Day 17: Paying Extra For My Entrance Into The Asylum

Beautiful Saturday.

Took the kids out yard sale-ing.

Kids got hungry.

Went to McDonald's.

Treated them all to Happy Meals.

5 stupid, dinky toys.

Cheap plastic donkeys that all say: "Shrek!", "Are we there yet?", "Peek-a-Boo!"




Over, and over, and over, and over, and over, ad infinitum.




Kids are estatic.

Mom is testing the beds at the funny farm.