Wednesday, December 19, 2007

16 days and counting...

Not much else to say except that she had a great day at school today.

Sunday, December 16, 2007

12 days and counting...

It has been 12 days with NO SEIZURES!!! YEAH!!! It has been wonderful!!! We have an appointment with her neuro next Thursday so we will see what he has to say about all of this. I would love to see what her EEG pattern looks like now. She has been doing so many new things lately...

  • She is clapping her hands. She claps her hands for all kinds of reasons. She claps when she just did something she is proud of (very adorable especially when you see the big smile on her face). She claps when you sing to her or she hears music. She sometimes even claps for no apparent reason (or least any reason that I can think of but who knows what goes through her mind).
  • She is following one step commands. She knows what her choo-choo train is and will turn it on when I ask her to (if she is in the mood) without me pointing or looking at it. She points to the kitchen sink when Daddy says it is time to brush your teeth. She points to the light switch when you ask her if she wants to turn it on (which she could do for hours). She walks to the kitchen counter when you ask her if she wants to eat (if she in hungry).
  • Her walking and balance is so much better.
  • She is much more alert and does not fatigue as easily.
Her therapist were all very proud of her this past week. They were impressed with all the new things she was doing and just her behavior in general. Sophie is just more alive...just more with it. It is hard to explain in can just see it in her eyes...she is just much more a part of this world.

Tuesday, December 11, 2007

Just have to share!!!

I can't hold it in anymore. It's been 8 days since Sophie has had a seizure. Her first jackknife seizure was on May 7, 2006 (a little over 19 months ago though looking back she was having subtle headdrops for about a month before that). She has had daily seizures ever since then until Monday, December 3rd around 2pm. I am so excited but so scared to get my hopes up too high. She has been very sick for the past 2 weeks but started feeling better yesterday and has been eating and doing very well today. I guess this next week will be the true test if she remains seizure free. Her neuro thinks maybe it was because she was ketotic but her seizures were horrible when she was on the highest ratio during the ketogenic diet. She started a second round of Depakote on November 10, 2007. I am not going to try too hard to figure out why. I am just trying to enjoy these days especially with her feeling so much better these last 2 days!!! I feel like I am just going to burst with joy!!!

Monday, December 10, 2007

Pure chaos...

The last 2 weeks have been absolutely crazy!!! Sophie ended up in the ER, yet again!!! Going back 11 days ago (Thursday, Nov 29th), Sophie started acting strangely. On that Thursday, she did not eat much lunch and she refused to eat any dinner. She was acting very disoriented. She kept pointing at nothing and kept crying. I have never seen her act this way before. I cannot even explain in words how odd her behavior was that night. We had just increased her Depakote and I was worried that she was having some serious side effects from the Depakote. One being acute liver failure which the symptoms are described as mental confusion and vomiting. Then the following morning at 6:15am, she vomited bile. I talked with her neuro and pediatrician and they advised us to take her to the ER to run some test. She had her blood drawn to check her levels and everything came back fine. We were told that she probably just had a stomach virus. The neuro had us decrease the Depakote back down to 125mg 3x/day. Of course, with there being so much in the mix, it is always a guessing game to try to figure out what is wrong. So over the next couple of days, she was very lethargic and ate very little. Then on Saturday, she started running a fever that lasted until Tuesday. On Tuesday, she started to eat a little bit more and I thought she was starting to feel better. Then on Thursday, she started vomiting again. So on Friday morning, I had her Depakote level checked again and it was fine (her level was at 61 - anything over 100 is considered high). When we got back from having her blood drawn, she threw up again so I made an appointment to see her pediatrician that afternoon. The pediatrician checked all her vitals and everything seemed fine but she prescribed Axid to help calm her stomach and Zofran to stop her from vomiting. Well, she vomited some more on Friday and Saturday. On Saturday, she refused to eat or drink anything at all. Then Saturday evening, after her Zofran dose, she started drinking again. On Sunday, she ate a little. Finally, that brings us to today...she had a relatively decent day of eating and was in a fairly decent mood!!! Hopefully, we have seen the last of whatever she has been going through. My poor girl - this must have been so difficult on her not being able to tell us how she felt or what she wanted!!!

I had to leave this past Friday afternoon to go out of town for the thank you Uncle Jason for watching Sophie on Friday and thank you Grandma Debbie for helping Brandon out on Saturday and Sunday. I am sure Brandon is especially grateful for you taking on nighttime duty on Friday and Saturday evening.

It is late and I should be in bed so I will post again soon about her new developments...there are some exciting things happening through all this chaos!!!