SAMi Camera And Second Opinions

SAMi gets a round of applause for fast (and free) shipping. We ordered late on a Friday and it was delivered ahead of schedule on Monday. As soon as I got home from work, I set it up. It is pretty simple overall; connect the camera to your router and once you find it and go through initial set up, you’re good to unplug and connect via WiFi. I have an iPad mini that was perfect to use with the SAMi. The settings are a bit of trial and error. I read their website and searched for a video that could possible help to know what settings to use. I found that motion threshold is usually between 10 and 25%. I set ours to 25%. Colleen likes to play and bounce, so there’s seen a few false alarms sounding. Which is 100% okay with me. It has provided a sense of relief as she sleeps and knowing we’ll be alerted.

 

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Settings screen.
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Main screen. The side will turn red and sound an alarm if any of the setting limits are exceeded.

Last weekend was her school’s fun run, which was to help raise money for activities and such. I can’t say enough about how much they’ve done for Colleen. She made it three laps this year. 😉 Her new favorite activity is walking but stopping to drag her left foot. haha. image1-2

Things are finally starting to get warm around here. Spring was slow to start and now it feels like full on summer with temps already in the 90’s. I spotted a very adorable pool at Target that she just had to have. Summer temps also meant haircut! I’ve lost count of how many times I’ve asked for the hairdressers to take a few inches off, but each time they barely cut off any. Her hair had gotten very long, so it was time. It’s about at her shoulder blades now and absolutely adorable. Cutting seemed to have bring back some of the curliness.

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And last but not least, some good news! We’ve been wanting to get Colleen in to see Boston Children’s Hospital department of Epilepsy for a second opinion. After her increase in seizures over the last few months, I really want to make sure we’re doing all we can to help Colleen do the best she can. Thoughts and prayers please for the next coming months; the med increase has seemed to help so far.

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Nothing more scary and heartbreaking..

I’ve never been more happy that I wasn’t able to buy something. I decided to buy a better camera and purchase a Canon 5D Mark II or III. I found a Mark II on Amazon and bought it, only for my order to be canceled by the seller an hour later. Frustrated, I emailed to find out why and got a response email that I had to let them know if I wanted it, and then “Amazon” would send me an invoice. If that was the deal, they should have just fulfilled the order when I placed it. This had red flags all over it, so I decided I wasn’t about to get scammed. So, no camera.

But that is OKAY! Because on Sunday, we wound up in the ER after Colleen had a seizure. How do you describe the moment of having to watch your child have a tonic-clonic seizure (the older term is grand mal—its the type you generally think of with stiff limbs and shaking.)? I felt helpless and my heart broke. Why can’t I be the one to bear this burden? We immediately started timing it. Seizures have the horrible ability to feel like they’ve lasted forever and yet only a few seconds have passed. After two minutes, we gave her the rescue med Diazapam and waited another minute for it to take affect. To me, she wasn’t breathing well so we called 911. When they came, her seizure had stopped and she was very weak.

We were in the ER for about 3 hours total, where they checked her over to make sure there wasn’t an underlying cause like infection or dehydration. They also checked her keppra level, which came back good. So, there wasn’t a lot they could do. We would have had to wait even longer to see the pediatric neurologist, but since Colleen was back to her self mostly, we were discharged to follow-up with her neurologist.

Her keppra dose has since been increased, but last night she had another seizure. This looked similar to her previous seizures, but her jaw was twitching. I don’t think this was a tonic-clonic. So the reason I’m extremely glad I didn’t just drop a ton of money on a camera is that this week I’ve been researching something to monitor her while she sleeps. Colleen always sleeps on her stomach and I cannot tell you how terrified I am of her having a seizure while she sleeps. After a lot of searching the internet and talking with her neurologist, we ordered the SAMi3 sleep activity monitor. It’s a camera unit that should be able to detect and alert to jerking movement. I’m really hoping this will help provide some peace of mind while sleeping. Colleen is also supposed to be getting her Embrace watch, which at the moment, isn’t supposed to ship until September. But as I was searching for monitors, I received an email for clinical trials of the watch, so I signed her up.

Sorry this post was all over the place.. I’m just terrified for Colleen. The care between Syracuse and Rochester is completely different, and it doesn’t make me happy that we’ve gone years without seeing a seizure to having two in a week. Is it because she’s growing or is it because of her medications? I don’t know, which I why we’re seeking a second opinion in Boston. I just want to be sure we’re doing the best and everything we can so that she can thrive..

For information on what to do during a seizure, please read here.