Archive for June, 2009

FYI, we will be at ACH Tuesday at 6:30 am for Luke’s upper GI scope.

Please pray that Dr. F can see any problems and be able to help our little man out.

More later … I’m moble blogging ūüėČ

Lee Ann


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Window Watcher

This video is an older one… well, it’s just a few weeks old. Check out all that beautiful hair. I miss his shaggy ‘do! Anyways, watch Luke get excited as Nick mows..


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Swing Swing

Dad found a new way to entertain after the swinging gets boring…

I vow to keep recording until I get a clip that will win me $10,000!! Stay tuned!


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A video for you!


My little non-performing-monkey will only do this if the wind blows from the East at noon on a Wednesday, so good luck EVER seeing this in person!


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Neurology today

I’m sorry if (generally) you expected a phone call from me today after the appointment. (G) You have to understand, sometimes it’s just too much to process all at once…all the information and emotional ups and downs.. the stress. Repeating the information to Nick afterwards is about all I can handle for a while. Diving back into it all to explain and answer questions feels like such a burden. For all intents and purposes I feel like I’ve just witnessed another seizure almost after that neuro visit. It’s much easier (for me) to not think about seizures, EEGs, meds, and all the possibilities for a while before I can go back and explore all those feelings and tell (g) you what is going on now. So, I’m sorry if I didn’t get back (g) you.

My sister M came along with me last minute to keep Luke awake ¬†on the way to the hospital. Luke has to be sleep deprived going into the EEG so they can get a good sample of wakefulness and sleep brain patterns. WE picked him up from ST/OT (which I’ll blog about later) and headed straight to ACH. Luke weighed in at 23 lbs (WOO HOO!) and was 2ft 5 in which I think is wrong. After getting his updated med list and a few other things we headed to get all hooked up.¬†

Pretty much it was sheer terror for Luke. I had to lay on top of him while he was on the bed getting hooked up. He’s MUCH stronger than he looks. I was holding his hands down to keep him from pulling of the electrodes and also trying to keep him from kicking me and pushing off to turn over and get away… so sad. He was screaming hysterically and there was nothing I could do to even help a little bit. ::sigh:: Finally, she finished at we got to rock and he nursed. I thought he was never going to fall asleep. Even being sleep deprived and crying hysterically he had trouble falling asleep. He was just so worked up. I prayed and prayed God would let him fall asleep so we could get a good accurate EEG. I prayed for other things too but at the time the sleep thing seemed most imperative.¬†

When he did fall asleep he kept scaring the bejezus out of me which these whole body myclonic jerks that everyone does when you fall asleep. But, he did it 6 -7 times.. and they were big jerks too. I was certain it would show up on the EEG but the tech said nope. After some sleep they flashed strobes in his eyes which was a great way to wake up an exhausted 17 month old. LEt me tell ya, that kid was haaapppyyyy! [insert sarcasm]

Luke got the electrodes off after that and then washed up and we were led back to the waiting room. We didnt have a very long wait before we were called back to meet the Dr. Sharp. We spoke first with the resident who was a really nice Indian lady who was afraid to touch Luke I think. It was kinda funny but every time she leaned into give Luke five and he made an unfriendly noise she jerked back away! It was comical! She asked a lot of questions about Lukes delayed developments and really seemed curious about which things were being worked on at therapy. 

Dr. Sharp came in and said the EEG was NORMAL! Great news right!? Ohh.. it is. But now this means Dr. Sharp wants to wean Luke off the phenobarb. We pushed against that and he said he saw no reason to start keppra. About here is where I starting feeling a lump in the back of my throat. 

IF the EEG had been abnormal we would have weaned off phenobarb anyways and on to keppra. Changing meds up is risky business and could cause seizures by the way. But, since Luke has been seizure free for 11 mos with 2 clean EEGs he felt secure enough to try to wean him.

Luke is on 8mL twice a day. This dosage is apparently on the higher end for his weight. Also, you can have normal EEGs and still have seizures… soooo…. Now do you see why we aren’t jumping for joy? Also, the average time between last seizure and¬†beginning¬†the process of weaning is typically 2 years… not 1 year like Dr. Sharp is calling for.¬†

I could take it .. I broke down. Don’t get me wrong, I did hold my composure. I didn’t make a¬†blubbering¬†idiot out of myself although that is EXACTLY what I wanted to do. Funny though, I usually feel so¬†embarrassed¬†at public crying but I really didn’t care what they thought in a way. However, it did get eerily quiet for a minute until Dr. Sharp told Luke to give his mama a kiss.. then we all laughed. Whew.¬†

He made a good convincing case for weaning: phenobarb is a¬†barbiturate¬†and it slows down the brain function and causes developmental delays which Luke obviously displays. Taking him off the meds could prove to be a great thing if he took off on his development. On the flip side he did warn that maybe the delays weren’t the meds too. Neuroscience is a freaking guessing game.¬†

He also told me the good, the bad, and the ugly of keppra in case Luke does have seizures while weaning. 

Here’s the plan of action:

After we get back from vacation in early July we will begin to wean.

We have chosen to go the slow route of weaning over a 4 month period vs 2 months that Dr. Sharp suggested at first. (After I cried he said we could go slower)

Luke is currently on 8mL 2x da. Every 2 weeks we would drop 1mL at each med time. So it would go 7mL 2x da for 2 wks, then 6mL, then 5, 4, 3, 2, 1, then skip morning dose and give 1mL at night for 2 weeks.. then none…¬†

He has prescribed Luke a new diastat pen for emergency meds that is 5mg instead of the 2.5 mg we have now. H’e s bigger boy and would need more meds if he did have a seizure. Also, he said at the 3 minute mark we could¬†administer¬†the meds¬†instead¬†of the 5 minute mark.¬†

Ya know, just as we were getting comfortable with the idea of being away from him, letting him walk into another room without us, possibly starting to entertain the idea of letting him sleep at night in his crib… we being to wean. After talking with Nick tonight we both agree we can’t go through this and be “reckless” in that fashion. Whether some people think were outrageously overprotective (and I know some of you think we are.. it’s ok) it’s the best we can do to survive this awful fear of seeing him have another seizure. Just thinking back to the last year and a half when all this started makes my stomach turn.¬†

All in all, I’m so thankful Luke has been seizure free for 11.5 months. God has really worked wonders in our tiny dude. I’m so¬†grateful¬†that he had another clean EEG. I’m so happy that we have a doctor who is literally a leader in his field and is respected in neuroscience. God blessed us with great doctors and therapists for Luke.¬†

We will see Dr. Sharp in 6 months so he can follow up on Luke’s development. I hope that we don’t have to see him for any other reason.¬†

Wow, I feel like I can breathe now that I got that off my chest………..¬†


Here’s a self portrait after the appt… notice the unhappy, tired little dude. He perked up a lot after popcorn and splashing in the water table!


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I could’ve written this post if I had a little girl in 5 years…¬†

Ballet Lessons

(From a blog I follow) 


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We went to the zoo a few weeks ago with our play group…

Here’s a few teaser photos…¬†



And HERE is that Facebook album where  all the photos are. 

We had a good time with everyone! Luke actually got out of his stroller and walked around a little bit. We even rode ¬†the train and Luke seemed to really enjoy that. We have plans to spend lots of time there this summer. The next time we go back we’re getting a zoo pass for the year. We really want to see the bird exhibit. I think Luke would like that. I’m trying to teach him what birds are in real life since we have a nest of swallows on our front porch but poor Lukie never catches a glimpse of them in time.¬†


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