Rough weekend

23 Sep

Some days just seem to be calculated to make you feel like a bad parent, don’t they? Jade had a pretty rough weekend; we were back up to 20 to 30 seizures a day and she had a number of injuries that have just added up to make me want to cuddle her in bed all day.

The worst part is not knowing what to attribute the seizures to. She doesn’t seem to be fighting a cold, although she occasionally coughs, but that seems to be permanent with her — we all cough sometimes, right? She did have an increase in Clonazepam (we added a lunchtime dose on Saturday) but don’t know if that’s the link. She’s actually having a hard time getting to sleep, which may mean she’s more tired, which may explain the increased seizures. But we have to look back through her records to see if this happened after the last Clonazepam increases (I seem to remember the opposite) and it could be that whatever it is will only last a week or two. It’s just so hard to know; there are too many variables.

My heart was so heavy when we dropped Jade off at daycare this morning. First I had to wake her up; after a restless night, she was sleeping hard this morning. I’m scared to wake her up these days because I worry that I will cause seizures by interrupting her much-needed sleep. But I had to get to work and Michael had a dentist’s appointment, so I pulled the blanket off her and thank goodness she woke up gently and relatively happy; it’s heartbreaking when she cries to go back to sleep.

As I was getting her dressed, I noticed the right side of her face was swollen up like a chipmunk’s. That would be the result of one of her seizures yesterday evening. She was standing on a short stepladder watching me make supper. I knew she might have a seizure and was ready to catch her. Unfortunately, the one she had was so violent, it slammed her head into the top of the stepladder and then flung her back. She cut up her lip and must have hurt the inside of her cheek as well, judging by today’s appearance. There was blood everywhere as she sobbed her pain and kept seizuring. I cried right along with her, feeling completely inadequate. She’d already fallen down some stairs at the playground in the morning (not the result of a seizure and not a really bad fall, although she did a face-plant that had her mouth and eyes full of sand) and on Saturday she managed to poke a stick into her own face and leave a welt on her cheek. Although I wasn’t really thinking, I could feel that this weekend might just go down as one of the worst parenting weekends in history.

I called the daycare a few minutes ago and Jade does seem to be doing better today; despite her lopsided appearance, they haven’t seen any seizures yet today. I know they were watching her closely because a worker from the Child Development Centre was there to observe Jade (part of the developmental assessment we’re having done). With all the seizures yesterday, we ended up giving her a shot of Valium last night, so even though we continued to see a few seizures in the evening, it might be helping to calm down the seizure activity today.

I’m sorry this is another downer of a post. Ummm, on the bright side, Heather and Leah really did come for two hours on Saturday morning and left in their wake a shiny clean (if still messy) house. It was so relaxing to sit on the kitchen floor to play with Jade and look around and think, “Ahhhh, what a clean floor!” God bless them.

12 Responses to “Rough weekend”

  1. Jenny September 23, 2008 at 10:34 am #

    Been there! I’m so sorry to hear this! It’s so hard when you have great days, ( they’re so welcome and so needed!) then have to plummet back into the seizures!

  2. Bubblybunny September 23, 2008 at 10:44 am #

    Sorry it was such a tough weekend. I don’t think it was a bad _parenting_ weekend, it was just a bad weekend. You’ve done everything you can for her and that makes you a good mom.

    I hope Jade’s seizure continues to improve so she can get better rest!!

  3. Mamasphere September 23, 2008 at 2:35 pm #

    Poor things! I’m so sorry that you had such a bad weekend. I hope things get much much better for you guys.

  4. Nem September 23, 2008 at 4:38 pm #

    I love you… xoxox.

  5. Sue Sullivan September 23, 2008 at 6:46 pm #

    Sorry to hear about Jade. I know first hand the gut-wrenching pain you feel for her. I had a bad day with my Dermot yesterday. He’s been on the Keto diet for 2-1/2 weeks now and the seizures are starting again. It’s such a helpless frustration that I feel when I watch him go through this. The doctor said we’ll have to adjust the ratio and that should help. He was seizure free for a good 5-6 days, the’ve been coming back gradually. Yuk. We’re actually weaning Dermot of the Clonzepam. I think it’s done more harm than good. It messes with their balance and makes them dizzy and drowsy. One day at a time. I enjoy your blog, thanks.

  6. Stacie September 23, 2008 at 7:58 pm #

    Awww, the poor little thing! What a rough weekend for her and for you guys. I cringed when you mentioned all her injuries this weekend. But true to Jade’s character, waking up in the morning after a few really bad days in a pretty good mood – that’s amazing.

    Oh yeah, and bad parenting??!!! Are you kidding us??! No way, not even close!

  7. Malva September 24, 2008 at 3:15 am #

    Such a rough weekend! I’m really sorry for you.

    But certainly no bad parenting on your part.

  8. Lindsay September 24, 2008 at 9:48 am #

    Thinking about you, and what a GREAT parent you are.

  9. Asheya September 24, 2008 at 6:19 pm #

    It’s so hard to see our kids get hurt. I’m glad she had a better day on Monday. I’m also really happy for you that Heather and Leah came and helped clean the house! That’s fantastic! Love and hugs.

  10. MommyTime September 24, 2008 at 7:10 pm #

    Oh, Fawn, my heart breaks for you. I’m glad she had a better day Monday, and I hope that continues. Love to you both.

  11. Lara September 28, 2008 at 12:32 am #

    You are a fabulous mom and an inspiration! DOn’t you forget it Fawn!

Trackbacks/Pingbacks

  1. Perspective « Fawnahareo’s Place - July 29, 2011

    [...] I try not to think too much about.  That was a month before Jade started on the ketogenic diet, a time where her seizures were getting progressively worse, the last month we had her in daycare before her seizures became so severe it was no longer safe to [...]

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