Mon 11/24/13 - Things in Common
Last week I stumbled across a blog about Annie. A young girl who went in for the same surgery that Breck is scheduled to have Dec 16, 2013. I was amazed at how much Breck and Annie had in common with the onset of their epilepsy. Annie is younger than Breck and had her surgery 1 year ago. Today she is seizure free. She still has some hurdles to overcome and work on - but overall is doing well.
You can read about Annie's surgery here at: http://sevenredheads.blogspot.com/2012/11/amygdalohippocampectomy.html
I was able to speak to Annie's mom Tiffany last night on the phone. What a blessing to hear of someone else's experience and gather advice on what to expect during surgery and recovery. Now Annie ended up having more of the brain removed than expected. She had some of her temporal lobe removed along with the hippocampus and amygdala. Therefore her issues from recovery could be different and harder than Breck will go thru. That being said - Here are some things I learned from Tiffany:
1. Video Breck reading out loud, telling a story, joke and even doing some sign language. This may prove very useful in her recovery - to know where she was at before surgery. Tiffany wished she had done this with Annie. Annie has had therapy weekly to help regain some of these skills.
2. This is Survivable. With all that Tiffany said - the last thing she told me was that even tho it is hard - we can get thru it. Tiffany really stressed taking care of myself as well as Breck. Sometimes us Mom's get wrapped up and when it is over - we don't know what to do with ourselves. Too used to worry. She said to not rule out counseling if needed.
3. Personality remained the same. This was a relief to me. Tiffany said if anything Annie is a happier child. She didn't experience a negative change.
4. Some of the trials after surgery were -
Not being able to speak for a few days. Annie tried to use sign language to communicate.
Not being able to handle more than 1 visitor at a time. Her brain was too overloaded. Annie loved getting cards and notes in the mail. This is how people were able to stay connected to her while she couldn't handle visitors.
Listening to people speaking sounded like the school teacher from Charlie Brown (Whaa Waa Wahh Wa)
Double vision that lasted at least two months.
Not able to handle loud noise or music. Even the church organ was a problem. Annie needed to leave the room during the hymns. Annie often took earplugs to school to use if the noise was just too much.
School work was impossible. Tiffany suggested that we talk with Breck's college about her scholarship to see if we can put it on hold if needed. Annie is just now able to stay up with school work.
Short-term memory is a real issue and slow to return. Annie is learning new skills to compensate for that. In the early months after surgery, Annie would read a line out of a book and not remember what she read after reading the next line. I am hoping that Breck's WADA test results are correct and that won't be an issue for her.
What is interesting are the thoughts that had come to my mind even before finding out about Annie:
John and I had discussed keeping a close eye on what tv / movies we watch and playing soothing / soft music. With the brain healing we want to be careful about what is focused on.
We also discussed how important it will be to have a calm / peaceful atmosphere in our home. Not so much coming and going.
Staying positive is very important. Breck and I already had discussed creating a place in our home to post "gratitude" notes up on the wall to help on something good in every day.
Even with all this we understand that Breck's experience could be very different - especially if the hippocampus and amygdala are the only parts removed. How very grateful I am to hear and read of Annie's experience. I hope we will be able to meet this amazing young girl and mother before Breck's surgery. I feel like we can be more prepared and ready for whatever happens.
Blessing through others. I look forward to when we will be on the giving side and be able to help others.
Smiles
Sean A'lee
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