Sunday, October 16, 2011
Tuesday, July 27, 2010
Madalyn finished round 3 of Acquire
Here is a video of all 3 years of acquire therapy (Constraint induced movement therapy at University of Alabama in Birmingham, through the Sparks Clinic).
2 more eye surgeries
So, Madalyn's eyes stayed aligned for 2 plus years and then they began crossing in again. We decided to go for another surgery. After the next surgery, her right eye started crossing out a lot. At that point, there was no choice but to go back in and correct that. with a third eye surgery.
Several months later, the right eye is still crossing out, especially when she looks to the right side. But two years later, her eyes look almost perfect!
Good news is her vision is fine, except she doesn't use her eyes together, but surgery does not usually help that....I wrote plenty about my research regarding stereo optical vision in previous entries...
Monday, July 26, 2010
Madalyn was a beautiful flower girl
Madalyn was a beautiful flower girl in Whitney's wedding. She had a blast with the bridesmaids!
After dancing all night, she asked me on the way home, "Will I still be a flower girl in the morning when I wake up?". I told her she would always be Whitney's flower girl. So sweet!
Good results from EEG
We successfully deprived Madalyn of sleep for her EEG and she fell asleep during the test (optimal). Being sleep deprived and falling asleep maximize the chances of the EEG picking up any abnormal activity. And even with that, the test showed NO ABNORMAL SPIKING! This is great news, and means she won't go on any seizure medication for now!
We keep emergency Diastat close by in case she has another seizure. If we don't have the medicine with us, we should call head to an emergency room if the seizure lasts longer than 5 minutes.
This is the best news we could hope for, so I am very relieved.
Update: September, 2011., 2 years later, Madalyn had a second long seizure that was stopped after 8 minutes with Diastat. An EEG following it did show spiking this time. A 24 hour Video EEG was ordered to help us decide if it is time for medication. The 24 hour EEG showed frequent spiking, in several regions, sometimes crossing over to the other hemisphere. This was not the news I had hoped for. After much thought and research, I agreed to start the medication her neurologist recommended....Lamictal. I trust her neurologist, but with all the side affects of seizure medications, it was hard to accept that she needs the medicine. However, we are hoping that by controlling the spiking, her concentration and hyperactivity may improve. We've been working our way to a therapeutic dose for 3 months, and still have a few more weeks. Because of the risk of side affects that can be very serious (i.e. life threatening rash), the dose has to be increased very gradually. I feel like we have already seen a great improvement in her behaviors. Mainly her fears that were increasing, and this "look" that would come over her, especially in new places, or places with a lot of activity. "The look" usually led to irrational tantrums that no amount of consequences or positive rewards could contain. We have not seen this type of behavior since starting the medicine. I had always felt like it was related to seizure activity, and since it has improved with seizure medication, I feel like I have some validation...but no one really knows...but for now, we are good.
We keep emergency Diastat close by in case she has another seizure. If we don't have the medicine with us, we should call head to an emergency room if the seizure lasts longer than 5 minutes.
This is the best news we could hope for, so I am very relieved.
Update: September, 2011., 2 years later, Madalyn had a second long seizure that was stopped after 8 minutes with Diastat. An EEG following it did show spiking this time. A 24 hour Video EEG was ordered to help us decide if it is time for medication. The 24 hour EEG showed frequent spiking, in several regions, sometimes crossing over to the other hemisphere. This was not the news I had hoped for. After much thought and research, I agreed to start the medication her neurologist recommended....Lamictal. I trust her neurologist, but with all the side affects of seizure medications, it was hard to accept that she needs the medicine. However, we are hoping that by controlling the spiking, her concentration and hyperactivity may improve. We've been working our way to a therapeutic dose for 3 months, and still have a few more weeks. Because of the risk of side affects that can be very serious (i.e. life threatening rash), the dose has to be increased very gradually. I feel like we have already seen a great improvement in her behaviors. Mainly her fears that were increasing, and this "look" that would come over her, especially in new places, or places with a lot of activity. "The look" usually led to irrational tantrums that no amount of consequences or positive rewards could contain. We have not seen this type of behavior since starting the medicine. I had always felt like it was related to seizure activity, and since it has improved with seizure medication, I feel like I have some validation...but no one really knows...but for now, we are good.
Wednesday, September 23, 2009
Happy Birthday to Madalyn
Yesterday was Madalyn's 4th birthday. It has been amazing to be her mom for 3 1/2 years! The one thing I never realized is how much closer a child brings a family. It's awesome to watch the love my parents and sister have for this child! She gives us reasons to take trips together, to eat together, and take bike rides together. All these things are things we would want to do, but because of Madalyn we actually find AND take the time to make them happen.
Madalyn celebrated with her school friends at the Jump Zone on Saturday. Happy 4th birthday Madalyn! You are such a big girl now!
Tuesday, September 22, 2009
Trip to the mountains
At the end of the summer we took a trip with our family to the Smokey Mountains! We saw a momma bear and two cubs. We spent two days at Dollywood watching the singing shows and riding kiddie rides. We hiked to a waterfall. We inner tubed down a river with some little rapids. Oh, and mommy got a new clutch in her car when it burnt out on the way up a big mountain to our cabin.
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