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Not a catchy title but bear with me. The life has been sucked out of me again.

Lets see.. In just a few days from now it would have been the 6 month mark that Luke would have been seizure free. In the past 6 months Luke started developing so much. The biggest achievement was him talking on New Years Day. What a glorious treat for us. Until then he had 15 words at 23 mos old. January 1 hit, and while at my inlaws he said ‘angel’ and several other random words out of the blue. I was floored. We all were. It was like God finally gave us that sign that he really was going to be ok. He was making this big effort to start talking. Making new sounds with his mouth and it was great! It was all babble but he was TRYING and that was something new. It seemed before he almost didnt know -how- to try.

We’ve had some really bad days at therapy and just a few really good ones. We started trying therapy in home (and at the clinic) after the Developmental Evaluation showed that he basically hadnt developed at all in one year. We all knew he had but he wasnt performing. He had to start participating and showing them what he could do. And also, he just wasnt separating well still. After 13 mos at KidSource he was still crying at transitions and its difficult to learn when you cry the whole time.

We also started fish oil in an attempt to seek better sleep. We knew there were huge benefits in the oral motor dysfunction area too so we were anxious to try it. LITERALLY – within a week Luke wasnt just babbeling.. he was SAYING all kinds of new words, parroting us, making up his OWN PHRASES, saying words we didnt even know who knew!!!!! He’s really quite funny. Hes witty. Smart. He loves to share whatever he has with you.. he loves everyone.. he really does. Ahh..

Anyways.

At the beginning of March he had an overnight sleep study complete with EEG and all kinds of electrodes attached head to toe. Literally. He didnt let us down. He woke up 19 times during the night and I was there to console him each time. Sadly, we came out of the mess with petichial hemorrhages around his face where he had screamed so hard he broke blood vessels. That was a tough night. Waiting for the results was tough too. After a couple of weeks we got a letter with results to which we googled every last number and word. Luke had mild central apnea which is the brain tell you to not breathe vs obstructive apnea which is plain not having a clear pathway to breathe. Also, he had shown signs of having parasomnia events throughout the night. The EEG showed good brain waves that reflected no seizure activity while sleeping.

After the initial sleep clinic meeting we moved Lukes bed into our room in an attempt to get him to sleep in his bed. Pretty much I became so exhausted I stopped being able to get up at each waking and keep him in his bed. It became that I could keep him in his bed the first half of the night then my body would shut down and I would find him on top of me in the wee hours of the morning nursing. Whatever. As long as he slept and I slept we made it work. Although, it wasn’t ideal. Its been all out survival mode since the beginning so what’s new, right?

Sadly, his first night he climbed out of bed and fell on my bed rail and cut his eye brow open. He has this nice scar that doesnt grow eye brow hair now. Check out his 2 year photos. Ill post some soon. He will defiantly have a scar for life there.

Fast forward > We are now on Klonopen which is an anti-epileptic drug (AED) that can help with sleep issues. We started on a low dose and began melatonin. Upping levels repeatedly over a months time has proved zero affect on his sleep. He wakes up in a confused state constantly, 6-15 times a night. Those are his parasomnia events.. sleep walking in a way. Sometimes he gets out of bed and walks around looking for us, asleep. Other times he just sits up and waits for us to lie him down again, but asleep. When he wakes up fully though, he was up for 2 – 6 hours in the middle of the night. Imagine how that begins to affect his day time mood, development, ability to learn, cope, play, grow. Hes stifled by his lack of sleep.

Dr. May Greible, the sleep neurologist who we’ve been working with and emailing back and forth set a new plan up for us on April 5, Monday. That was yesterday..

The long and short of it: The plan was to sleep deprive him to get his circadian rhythm back on track. Theres more reasoning and details behind the scenes.

  • Wake up at 6am no matter if he only got 15 minutes of sleep.
  • No nap until 1pm. Wake up at 2:30pm.
  • 3mg regular melatonin to tell body to begin getting tired at 6pm.
  • 7pm shut down all electronic devices
  • 8 PM – Bath, dim lights
  • 8:30 – 8:45 PM – Melatonex and Klonopin (.75 mg), 100 mg B6 (try)
  • 8:45 – 9 PM – Book, prayer, song
  • 9 PM – Asleep

If he wakes, put him back in his bed!  He stays in bed until 6 AM, no matter what.

So, we tried it. He was slobbering tired. Nick had gone to a town hall meeting and literally moments after he walked in and scooped Luke up he began seizing. It’s such an ugly thing to see. It lasted 2 1/2 minutes and we thought it ended. Then as I picked him up he started seizing again so we timed it as one seizure lasting  at almost 4 minutes. I had the emergency meds, Diastat, ready to be administered but he started slowing right then. He came to briefly and he understood that Dada was home and he seemed to want to see him. After he was less confused he began screaming this low, painful, guttural scream. I cant imagine how his head mustve wanted to explode with the pain and his muscles ached from the repetitive tightening and relaxing for almost 4 minutes. We somehow managed to get the rest of his meds in him that were due based on the sleep plan and got ibuprofen in him also.. He quickly fell back asleep at 9pm.

He didnt wake up until 5am. You can guarantee I was watching him half the night. I pretty much lost myself in facebook and talking with friends to keep me distracted so I didnt let my mind wander too much. He was awake from 5-7am and then said “I ti-add” and wanted us to lay him in his bed. He was out like a light again. Nick stayed home and let me sleep while he watched Luke. Nick woke me up after a while and went into work. I sat in bed and watched Luke til 10am when I woke up and wanted to get in bed with me. He stayed asleep until 1115am.

He seemed alert and talkative in his normal manner. Nothing out of the ordinary other than he wanted to lie in bed instead of following me to the bathroom, two times.. I just thought he was tired.

Finally when we got out of bed I carried him because I felt sorry for him. When I finally sat him down in front of his closet to play with shoes while I got him clothes he fell over. I thought he was just tired but then immediately realized maybe I needed to make sure. I went across the room and got his Mickey book. He took one step and fell over again. I went across the room.. again. He fell and couldnt catch himself. He was walking around falling, flailing, staggering and tumbling everywhere.

It was scary.. like something was wrong kind of scary. I called Nick and he wanted to get video. Nick packed up and came home then and by the time he got home Luke was doing better but his knees were buckling under him. It wasnt AS BAD as earlier.

Tracy, our nurse contact in the ACH neuro dept, said she thought that the dose of Klonopen was too high and was basically making him drunk. She said she would talk to Dr. Sharp (neuro) and get back with us. If the Klonpen was too much for him, that means we will more than likely have to wean off that and try a new drug for sleep issues. If its not too high a dose, there could be nerve damage OR it was just the after affects of the seizure.

As I type Tracy is speaking with Dr. Sharp so there will be an update very soon…

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Where do I start?

I haven’t posted in 4 months. I hate that I haven’t posted in that long.

Luke’s development has sky rocketed since November. I like to think I’ve been living in the moment versus analyzing it to blog about. It’s kind of a lame excuse because now I regret not documenting the big thing. Like the fact he started talking -really talking- on New Years Day, or that he can theoretically count to 2.

So, after some friends did some gentle nudging, here I am. I suppose I will catch up on the big milestones, post some precious photos once again and try to stay caught up on his developments and medical news.

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So a lot has happened the past couple months. If you’re my friend on Facebook then you know the story. I just haven’t felt like blogging about all of this while we were coping with our own emotions. Blogging kind of exposes you and I wasn’t ready for that.

I know it’s just seizures and people lead normal lives just fine with them but …. oh wait. Here I go talking about it. I didn’t want to do that just yet.

The point of this post was to just get it out there that I will begin blogging again and also hopefully this will motivate me to begin. I wanted to blog to kind of keep a journal going about Luke’s milestones, medical info, and all the boring day to day stuff. I don’t want to get too far behind!

Here we go! Expect a post soon!

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Evenings with Luke

It is that time of year again – fall – and Lee Ann is back at McAfee Ballet.  Three nights a week, Lee Ann, for the sake of her own sanity and physical/emotional well-being, abandons Luke and me for her students and her friends.  Luke and I miss her, but it gives us an opportunity to spend time together alone and have father/son time.

This week we’ve played on the swing set, Luke played on his slide, we went for a walk and Luke took a long bath (he still loves bath time).  A video and some pictures follow. 🙂

swing

slide

bath

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TEFRA/Medicaid and Luke

Lee Ann asked me to do a short post about Luke’s recent TEFRA filings and how things are moving (or not) on that front.

I sent in a substantial check to cover three months’ TEFRA premiums.  Of course, I’ve already received an invoice as if I only paid for one month.  I guess I’ll deal with that this weekend.  Anyway, we thought his medicines would finally be covered; anything insurance didn’t pay, TEFRA should pay in full.  Guess what?  It’s not so.

Medications have to be on the “approved” list, and of course, Luke’s medicine was not.  In their infinite wisdom, the mighty federal government has decided that the acid reflux medicine he is on can only be paid for if the person was first on another particular one for 2 months.  So, after fighting reflux for practically 19 months and finally getting it under control, the government is forcing Luke on to a medicine we and his doctor KNOW will not work and will probably cause him discomfort for 60 long days and nights.

Fortunately, Luke is a sweet kid with a good disposition, and he’ll get through it just fine.

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Updated Blogroll

Just a small PSA: I have update the blogroll to the right with some more excellent blogs that I follow. Check them out and if you have a blog that I need to be following, email me, comment, or facebook me with the link. I ❤ me some RSS feeds for blog following. 

 

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So big boy here has very recently started showing interest in PL – potty learning. I picked up The No Cry Potty Training book and will also pick up some other potty learning books soon too.

He enjoys sitting on his potty. He claps for himself and points and directs me to do the same on my potty too. Lol. Yesterday morning we had to bribe him to get OFF the potty because he just wanted to sit there and be proud of himself! He even got a book once to read on the potty. That was cute!

So far he has peed in front of the potty on the floor. So close yet still so far away. He has pooped on the potty in his diaper, and again not quite there yet.

The fact that he can’t undress himself nor communicate either by sign or verbal means it’s going to be hard to PL right now. I don’t expect much obviously but he’s so slow to learn things I thought we should introduce it early.

We got the potty out at 12 mos and it took several months before he was ok with it being in the room.

It’s so exciting!
Lee Ann ( mobile blog post)

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