After 2 1/2 years, Bug hit her one year mark of being seizure free on her medication...finally! She went to PCMC on Monday for her annual EEG and we had her Neurologist appt. today. For the EEG she had to go 24 hours with no caffeine or sugar. A few months ago, when she overheard me on the phone with the hospital getting details, she thought that meant no sugar or caffeine EVER. The caffeine, not so much a problem, but this is the child who I would find with a spoon and the container of brown sugar, munching away. She told everyone that she couldn't have sugar, and it has been quite nice the last little bit! Anyway, after her EEG we were laying on the couch (she had to go severly sleep deprived also,which means I am severely sleep deprived, so we took it easy the rest of the day). She turned to me and asked if she could have caffeine. I said yes. She then asked if she could have sugar. I said yes. She thought for a minute and said "mom, let's talk" Well, what do you want to talk about? "Sugar" "What about sugar?" I asked. "Let's talk about getting me some" Hehe!
Today's appt was disappointing but good. She has to go at least one more year on the medication, and he wants to see her back in 6 months, but he sees improvement, so I can't complain about that. She was really nervous about this visit,which was weird, since she goes every few months, and kept asking me if she was going to get a shot. I kept reassuring her that he was just going to look at her really quick and then talk to mommy. When we got into the office, she sat next to me. He chatted for a few minutes and then asked her to jump up on the table so he could examine her. He bent over the other way to get something. When he did she turned to me, scrunched her face up and did the "I'm watching you" move with her two fingers, moving from her eyes to me. As soon as he straightened up again she went back to looking at him with an innocent smile. Where does she learn this?
side note, in 2 years she has gained a whopping 4 pounds, but shot up 5 inches!
Today's appt was disappointing but good. She has to go at least one more year on the medication, and he wants to see her back in 6 months, but he sees improvement, so I can't complain about that. She was really nervous about this visit,which was weird, since she goes every few months, and kept asking me if she was going to get a shot. I kept reassuring her that he was just going to look at her really quick and then talk to mommy. When we got into the office, she sat next to me. He chatted for a few minutes and then asked her to jump up on the table so he could examine her. He bent over the other way to get something. When he did she turned to me, scrunched her face up and did the "I'm watching you" move with her two fingers, moving from her eyes to me. As soon as he straightened up again she went back to looking at him with an innocent smile. Where does she learn this?
side note, in 2 years she has gained a whopping 4 pounds, but shot up 5 inches!
10 comments:
oooh poor little bug. I know how you feel, we have been dealing with the eeg mri thing with Xander for the past few months. He has been seizure free (noticable seizures) since June 2005. They are thinking he is having silent seizures now, because the eeg showed signs of them. But so far they have not put him back on the meds. We are treating his episodes like migranes right now. Good Luck to you and Bug
I'm so glad she's doing well! Hopefully next year she'll be able to be off of them. How stressful is that! I love her cute personality! So funny!!
I love this girl's thinking, "Let's talk about sugar and getting me some." I'm thinking about having that made into a T-shirt! Brilliant!
Glad to know that it went well, despite the necessary medication. Hopefully cutie girl is now bouncing off the walls with a sugar buzz! Love the "I'm watching you eyes"...so cute!
Had no idea she had these struggles poor thing! Wendi Jagersons daughter also has seizures. My niece as well. We will pray for Bug's good health!
Funny that I would come read your blog and see that Cheryl already told you about Heather! :) What a pal! She's been on meds for a seizure disorder for about 9 years now. We've done the PCMC EEG thing several times. Right now she's taking 300mg of Trileptal morning and night and is miraculously stable again this week. Good luck to your daughter!
Hi sweetie, glad Bug is doing ok..love the sugar thing, mine would be 'me want chocolate'...i get a headache just thinking about going 24 hrs without chocolate and sleep..
Busy packing, love u
Auntie
Sorry I couldn't help this time. July was a crazy, busy month and our trip w/cousins came at a really bad time as far as family went!! I'm glad she did so well...it's good she's in "tight" w/all the nurses! She's such a sweetheart and is so good about her meds. Glad Brie and Dan got to help. Love, Mom B.
O that picture just tugs at my heart seeing her all wrapped up like that. :( I am so glad to hear that things went well for all of you!!
Oh breaks my heart seeing her all wrapped up like that! Glad to hear she is doing pretty good now though!
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