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One year, two weeks.... Seizure control

It's been one year since we prepped ourselves for a scary surgery for Zoie; her VNS surgery to somehow help her seizures. Little did we know, it would cause my water to break, and that Derik would be taking care of a post-surgery girl all on his own. Taking a few steps back, last March 14,2014 we showed up to Children's, or I actually waddled in being 31 weeks pregnant and huge (I thought so anyways) to prep Zoie for a much anticipated surgery. I think we knew it would be easier to get it done before Ivie made her debut, and we were hopeful it would help Zoies seizures. I remember waiting in the room, Zoie in her little gown, spending time in the playroom to waste time until the operating room was ready. Around 11, we carried her to the CT Scan room where they would put her under, do a CT Scan of her chest for Pulmonary purposes, then wheele her off to surgery. That was tough. Laying your child down and kissing them and holding their hand, as they have no idea what's about to happen, yet you do. She drifted off so fast from the gas, and luckily her breathing stayed phenomenal! I hated to watch that, but I felt it was our job to be there with her. They sent us out, and as we headed to the cafeteria to eat (a distraction as she was in surgery) I rmember bawling my eyes out. I was so used to being in control, and now I had no control. Just had to wait for our pager to go off so that we would know she was out of surgery. We spent a big chunk of time in the cafeteria with our parents snacking, and talking, then headed up the the waiting room to wait for updates on Zoie and how her surgery was going. VNS stands for Vengus Nerve Stimulator. It's a square magnet that is placed in the left side of the chest, under the skin, and had a cord that wraps around to the bottom part of the Brain stem. They made an inch long incision along Zoies collar bone and were able to do the whole surgery from there. The VNS is set to vibrate (go off) every 5 minutes which re-sets the brain in a way and is used to stop, control, shorten, or help with recovery of seizures. Zoies surgery went quick and we were able to go see her in recovery shortly after. She was so out of it, and in lots of pain. We stayed in recovery for 3 hours as Zoie woke up, then they sent us on our way with care instructions and we were headed home! This was all one year ago. We slowly "turned" the VNS up so it wouldn't irritate her, and we do believe it has helped her! She stopped having very long seizures, if we "scan" her chest (which makes the device go off) it sometimes pulls her out of her short seizures, and it's definitely helped with recovery. We haven't chabged the settings on the device via clinic with a doctor for 9 months now, but when we see Neuro in May, we plan to increase the frequency a bit. This may help her seizures a little more. Zoies scar looks great, in fact if you didn't know it was there, you wouldn't see it. I think Derik and I are both glad we did this, even if we have only seen a slight progress with helping her Epilepsy. Now everyone is probably wondering about the CBD oil. I saved the best for last ;) We started the oil 9 days ago, and to be honest, we won't know if it's helping for a few more weeks. If zoie he more seizures we probably could, but since she only has a few a month (normally) we can't quite tell yet. Although, she had only had one in 4 weeks! Thanks to God! She takes the oil in the morning and at night, just gets one tiny drop on her tongue and swallows it like a pro each time. We are thrilled that she doesn't mind it and is doing so well thus far with it. It's a thick dark oil and it does have a smell and a taste. Not my cup of tea, but if it helps her, I'm all for it! We will do a CBD update in a few months and let everyone know where we are with things. As always, thanks for the unending support!

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