Luella Update
Luella ended a 15 day seizure-free run on March 15. She had a great first half of the month. On the day before her seizure she was able to walk the entire length of the balance beam at her DAPE class without falling off once!! She hasn't ever done that before and she did it THREE times that day!! It was great to see her taking her time and being so careful! Usually she won't slow down and ends up falling off. She was also able to balance on one foot for longer than normal as well. I'd like to think going 15 days without a seizure helped her to have more balance but it's really hard to know for sure. After her seizure on the 15th she had another one on the 19th... that one happened at church and she ended up falling. I'm praying we can finish out the month with out another one! Luella has been a bit of a challenge behaviorally the past week or so too. Simple little things just set her off and we have lots of tears. I asked her if she wanted a pickle the other night with her supper.... she said "no" so I walked away from the pickle jar. She immediately started crying that she DID want a pickle so I turned around and got her a pickle, then she proceeded to have an enormous melt down because she said she did NOT want the pickle. We go through many sessions of indecisiveness throughout the day.
Purple Day for Epilepsy
Many of you know November was Epilepsy Awareness Month, but March 26 is Purple Day for Epilepsy!! If you couldn't wear purple all month long in November - I forgive you! :-) Wednesday is your chance to wear purple for ONE DAY and show your support for Luella and those with epilepsy around the world!!
Why do we wear purple??
We need to raise awareness to help those with epilepsy so better treatments can be found and hopefully someday... a CURE!!
These precious little angels have lost their battle. This is a tribute video of some of the special Dravet syndrome children we have lost in 2013 and so far in 2014. I pray for these families and the emptiness they must feel. I pray that we will never have to add our precious Luella's picture to a video like this!
Watch the video here: http://youtu.be/T1ote0DdUjI
If you haven't already signed the White House petition to reclassify marijuana to make research easier... PLEASE take 2 minutes to do it now. So far there are just over 2,000 signatures... we need 100,000 before April 19th to get a response from the White House!! Please HELP!! Share this and pass it on! You will need an account to sign the petition - just click the blue "Create an Account" button near the middle of the page.
https://petitions.whitehouse.gov/petition/ask-dea-reschedule-marijuana-lower-level-benefit-greater-access-research-purposes/vJVF409k
That's so exciting that Luella was doing so well with her balance!
ReplyDeleteI watched that video on fb and bawled the whole way through...thinking the same thing...I hope Ben's picture never ends up here :(