Banging my head against the wall

At least I want to anyway.

Bedtime has gotten to be a battlefield again. I don't know when it happened. Kinda snuck up on me, insidious-like. I mean, I've been putting the boys to bed at the same time in the same room for a long time now. And I don't remember ever having so much trouble getting them to be quiet and go to sleep. Sure, they used to giggle and laugh and carry on, but only once in a blue moon and never two nights in a row. It is every night right now. Nothing in my discipline bag-o-tricks is working either--they just laugh it off which is irritating as all get out. At the end of the night, when they've finally fallen asleep out of sheer exhaustion (not because they are obeying me), I am beyond all reason completely at my wit's end and have "lost my cool" more often than not. Let's just say that raving lunatic would only be a slight exaggeration.

Two weeks ago, when I was only just starting to be frustrated by this, school was looming. I knew we would have to kick it into high gear and work on getting the boys a reasonable amount of sleep. So I went about trying to "fix" this. I tried to put them to bed earlier, separate bedtimes, running their energy out at the park before bed, and the like. The one time that separate bedtimes actually happened, it did work, but I haven't been able to do it again for whatever reason. And nothing else I've tried has had any positive results. I've considered moving one of their beds into Ella's room, but I really don't want to disrupt HER sleep in addition to theirs.

Sooooooo, does anyone have any suggestions? I am open to anything, ANYthing. I'm so completely frustrated and defeated.

-------------------------------

Moving on.

I'll end on a funny story. Cooper helped me take out the trash this morning before school. And by that I mean he ran to the curb to show me where to put the trashcan :). I love how he wants to be with me all the time and be a good helper. It really is quite endearing. Anyway, as we were walking back toward the garage, he noticed that one of our neighbors' houses had an American flag hanging in the post. He got really excited and said, "Look, it's 'Bama!" As in Obama (not Alabama, just to be clear). Too funny. And what a smart boy he is to make that connection!

Well, the girl is waking up. Off I go. Can't wait to read your remedies for our bedtime woes!

p.s. By all early reports, Jackson's having a grand time at school. And though I miss him, I am enjoying my time with the littles. Win-win!

♦

Tomorrow is a big day

Jackson starts PreK in the morning. It is a full-time program through the public school system, which means he will be there for seven hours a day, five times a week. Yikes! They have lots of rules including a strict tardy policy. Double yikes!!

We met Jackson's teacher yesterday, and my initial impression is that she is very nice. As we entered the classroom for orientation, she had Jackson wash his hands to prepare for a snack. She began to show him the proper way but quickly realized she was dealing with a pro :). "Oh, you already know HOW to wash in between your fingers," she exclaimed. And my suddenly shy boy nodded back with a self-conscious smile.

While the kids snacked, we old folk went through the parent handbook together. Did I mention that there are a few rules? Um yeah. But we also talked about the schedule, and the curriculum, and the mission of the program, and I gotta tell ya I'm pretty psyched.

Afterward, we toured the school. And checked out the playground. We had already officially ended our time when Jackson asked if he could play for a while. He tried out a few things and eventually decided to ride one of those springy ducks with a saddle on it. I was excited to see him really get into it while riding because he's usually pretty cautious. I had no sooner had that thought than he started crying and saying that something had hurt his foot. About the same time, I noticed a wasp flying menacingly nearby, as though its nest was being disturbed. I quickly and rather unceremoniously pulled Jackson away from the duck to try to keep him from further harm. I took his sandal off, and sure enough a very small red wound had cropped up on his foot. He did not get what had happened to him, and more than anything that's the part that got me. Crying huge alligator tears, he tried to understand my explanation. "What's sting? What's a wast?" Oh the injustice!

(It reminded me of the only time Jackson had to have blood drawn from his arm. He was chatting with the staff and smiling, completely unaware of what was to come (though I had tried to prepare him), but when the needle stuck him he became really sad, almost as though he felt betrayed. By the way, we returned to that same lab a few months ago during the height of Ella's seizures, and Jackson remembered the needle stick incident that had easily occurred more than six months previous. So yeah, these are things that are not easily forgotten.)

It was not exactly the ending I had envisioned for Jackson's introduction to his new school; though I wanted it to be memorable, I really wasn't angling for trauma. He took it all in stride though--if you could call it that seeing as how he asked me to carry him to the car :). And we got to stop at the grocery store for some benadryl, which by his report tasted like bubble gum. And finally, he agreed that since the teacher would get the spray and get rid of the wast's nest that it would be safe to get on the duck next time.

He spent the remainder of the day asking me questions about wasps and then incorporating the information he learned into the retelling of his tale about getting stung. By the time Chris got home from work last night, Jackson had already practiced on both sets of grandparents, so the story had evolved nicely into quite a lengthy yarn.

Like I said, he starts tomorrow, so I better get to bed. The boys' bedtime started out alright but ended up being a bit of a disaster, hence the just now posting and such. We still managed to pray together, though, which was nice. I've never prayed the my-kid's-going-to-public-school prayer before, but I gotta say it's a bit more fervent than I expected ;). I kid. I kid. Mostly. In all honesty, I am really excited for this opportunity and can't wait to see what's in store for my big boy this year.

It will just be I and Jackson when I drop him off in the morning, which is really great. I hope to have just enough time for pictures but not enough time to disintegrate into a blubbery mess. That's a fine line, you know.

♦

My sweet boys--an update

Geeky mom alert!

Jackson is such a neat kid these days. His mind is in constant motion as he tries to make sense of this world in which we live. I am amazed at the connections he makes and the things he remembers. Just today, he again asked if we could go see Dora "at the big show without the glass." We saw Diego Live more than a year ago--I think--in the local theater. Which to him was apparently like a big TV sans the glass. Makes sense to me!

He got eyeglasses the day before Ella was born, as you might remember, and he is still wearing them. After a rocky start and a few battles he keeps them on all day long without complaining. Everywhere we go, no exaggeration, someone always tells Jackson how much they like his glasses. Even this too-cool-for-school college guy made a point to tell him so in the grocery store last week. It always surprises me because I hardly notice them anymore (which is saying something because if you haven't noticed--see the picture in my sidebar for reference--they're kinda blue).

In other clearly-my-first-baby-is-not-a-baby-anymore news, Jackson got dressed all by himself one morning last week without any prompting from me. He woke up, moved a step stool into his closet, stood on it to reach for a shirt, then went to his dresser to get some underwear and shorts, and put every last bit of it on, including his glasses. It even matched too. He couldn't have picked a better time to start asserting his independence, either, since PreK is starting in a few days. Five full days a week! He's excited, and I'm . . . a little sad but trying to be brave.

Cooper is my precious, snuggly, punch-y, sensitive, adventurous boy. Oh my word, do I love this middle child of mine! Full sentences and original thoughts are the norm from him now. I cannot believe how incredibly smart he is. And how amazingly good at Wii Golf he is; I'm talkin' par or bogeys every single time, complete with arms raised over his head in celebration while squealing, "I did it, Mom!" The boy couldn't have a more perfect swing either. We've already half-jokingly labeled him The Athletic One. Like Jackson, he's showing his independence too. How many times have I heard him say, "No! I do it myseff!" He's still very much a baby in a lot of ways though, which is good for me to realize. He has not yet lost that sweet crease of baby fat on his legs, for example. He melts my heart with his, "I wan' a kiss!" and "Come sit wi' me, Mom." And he comes up with new ways all the time. Tonight, when he should have already been asleep but instead needed me to lay down with him, he snuggled up to me and softly said, "I love you, Megan."

♦

I've lost count

I have to look at a calender now when I try to count up the weeks that have passed since Ella's last seizure. It will be seven weeks tomorrow, if you were wondering. She is down to two medicines, and in four weeks or so will be down to just one. We're also working on getting her discharged from home health, since she is no longer on the steroids.

In development news, she continues to be in constant motion, trying new tricks all the time. Ella had a PT session on Monday, and before it began I told the therapist, "She is gonna knock your socks off." And she did not make me out to be a liar. The therapist couldn't believe the progress that Ella had made in the two weeks that had passed since she'd last seen her. So proud of my babe!

I'd been meaning to do this since the last appointment, but on Monday afternoon I got her an exercise ball (to encourage strengthening of her core muscles.) I think she really enjoys it up there. I'd love to share photographic proof of her delight, but as you might imagine my hands are incredibly full during that time.

But, I would like to offer the following in an attempt to satisfy any picture cravings you might have.





Thanks for checking in!

♦

God to the suffering

Ella is still doing exceptionally well. She hasn't had a seizure in over five weeks. She had her last ACTH shot on Sunday, with no obvious withdrawal symptoms cropping up. And we are still in the process of incrementally decreasing her phenobarbital; she's already on less than half of her max dose, which is allowing her full activity and personality to shine through. She is, God is, AMAZING!

It is important to me that I mention that while I credit God for bringing her through this with the best possible outcomes so far, I do not want to sound insensitive to my new IS friends who have children that are still very much in the throes of multiple clusters of spasms a day or imply that God has somehow forsaken their kids. There is no pat spiritual answer for why Ella has been able to kick these seizures so quickly while other babies have not. My heart aches for these families who are still walking this road of infantile spasms (one we may have to revisit in the future), but here's the thing: more importantly, I believe that God's heart aches too. That He has gone through all manner of human suffering and understands our hearts. And I pray earnestly now, as one who has had to look a devastating diagnosis right in the face, that God would carry my friends through--that they would be shored up with a supernatural strength and peace--as they search desperately for the treatment that finally brings seizure freedom to their children too.

Job 36:15
But those who suffer he delivers in their suffering; he speaks to them in their affliction.

Psalm 22:24
For he has not despised or disdained the suffering of the afflicted one; he has not hidden his face from him but has listened to his cry for help.

♦