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.