Emily is going to step three of four tomorrow on her Banzel titration. That means we are just on step two right now .... and KNOCK ON WOOD ... she is doing awesome! She has had less seizures yesterday and today for sure. The only bad thing is that the side affect is sleepiness/sedation and she was feeling that today for sure. She was whiny and tired which makes her mean. I know she doesn't mean to be, but she scratches you and pulls her own hair and scratches herself, and yesterday she was BITING us like mad! She bit her daddy's finger and drew blood! She bit my head even, when I was holding her up against my chest. She had her head on my shoulder and she turned and BIT my head! Right above my ear, hair and all. Just chomped. At times it was comical, she was just like CHOMP CHOMP CHOMP. We were calling her Piranha Baby all day. Today luckily that was passed. I think it had some to do with her constipation, which she has had all week. Yesterday I finally got her to go, but it had been five days. I wonder if constipation is a side affect of banzel? I will have to google it.
Not much else is going on right now. We are still waiting to hear from Make A Wish about the dates of her room makeover. I hope it's soon, we are definitely ready!!
Tomorrow I am taking the kids to Disneyland while daddy has to work. It should be a fun day!
14 comments:
Hello!
I'm glad that Emily is starting to do better!
I couldn't help but laugh at her biting antics.
Have fun at Disneyland - I'm so jealous you get to go so much - I'd love to go just once!
I'm so excited to see her room and that bed! We have one ordered for Jax, and I'm so excited that it will be high so I don't have to bend over him and break my back. I also love that the head comes up and my favorite....the IV pole attachment. The bed was denied, but my home care said its always denied the first time and you have to appeal it, which is ridiculous because they are only spending their own money appealing it!
What great news that the seizures have been better! Have fun at Disneyland.
I am so happy that Emily's seizures are getting better!! That is good news!
I know that air that we are getting from Maggie is super crazy. I'm emailing with Lacey to see if she knows of anything we can do. Her doctors don't know what to do either. This is all just nuts. I feel so bad for Maggie.
Anyway thanks for commenting. I was hoping someone would've had the same problem but so far nobody has. If you want to give me your email I could email you what I emailed Lacey about the problems we are having. Maybe you or someone you know has had one or some of them. I just want to figure our what to do for her.
Yeah! Can you even imagine what it would be like without seizures?! I hope things keep going so well...maybe with fewer bite marks though:) And don't you fret, I haven't left comments for people in a while either. I've been so busy, I just am able to read and run. But I have to stay caught up wtih you guys, I just don't let you know all the time:) But it feels like things are back to a better pace now...hopefully I'll have more time. Have fun in Disney!
The teenager was the same way the first few months of her new seizure med...tired easily and mean and cranky. I made her nap EVERY day because of the attitude. Gradually it wore off and she no longer naps. Hope this passes with Emily as well!
Madie was on Banzel for awhile. It just killed her appetite and she was loosing weight in an already skinny small kid! I was not taken by this med. Pretty Sleepy as well. Poor baby girl cant voice her frustrations. Madie loves vibrating teethers or the Jiggler toy. I hope things look up. Good News about seiuzres! Ya just never know! Madie had been having what we call "honeymoon days" we hope they last!
So glad that seizures are better. constipation, yuck!
I can't wait to see pictures of her room after Make a Wish is done. Sound like it will be wonderful. Have fun at disneyworld..
LOVE that picture!!!
Oh, I'm happy to hear that the Banzel is working for Emily. I do hate side effects -- it's so terrible that they have to endure that, no? I hope she gets tolerant of the side effects but not the efficacy of the drug!
Great news on the Banzel.Really awesome.Praying for less and less and finally,praying for seizure freedom for sweet Emily!
Darn side effects ... add that the seizure relief comes with a price.in Zoey's case ... beginning of her total loss of oral eating.I am certain Emily will adjust soon to her dosage and the sleepiness will decrease.
Cannot wait for her room makeover.Very,very cool!
PS zoey and constipation ... averages... 9 days!HATE it and we have tried EVERYTHING!
Glad her seizures are better!!! Sorry about the constipation though, we go through that ALL the time and it is not fun - Alex bites and pulls her hair on a daily basis (usually she bites herself though), it's the only way she knows to show us she's frustrated :(
So glad you are home. Praying recommendations work for sweet Emily. My toy from vtech came in like the spining one that Emily got for Christmas. Love it....
Hope Emily is doing well and keeping her in my prayers.
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