Happiest News First! BLUE and BLUE’S DELIVERY IS PAID IN FULL! Yay! Delivery is set for April 9th! We are so excited! We can’t wait to have her here and to train with the trainer on how to take her everywhere and keep up with her training as well. Brett is super excited! 17 days and counting down! With the trainer and Blue here we will visit stores, restaurants, bowling alley and theatre to be sure we do not have any access issues. This will help Brynn and Brett learn to handle Blue as well. We have gotten a few homecoming gifts from Blue’s wishlist. I will post the link at the bottom. Brett had a 4th medication added, Depakote. This medication has helped a great deal with controlling the myoclonic and atonic seizures that were making him fall. He is having less Complex Partials with this new medication added on and has only needed Diastat once for rescue. We also got the advice to give Ativan for the “seizurish” activity that often happens before a bigger seizure. It was confirmed that the “seizurish” activity is actually seizure activity. This has helped him to not go into as much clustering having this clarification. Brynn is still doing fabulous on his medication combo.
The Geneticist got the results back for the Microarray and the Fragile X, both test were negative for both boys. He believes what we are dealing with is “Metabolic.” Ha, after hours of researching I concluded that can mean hundreds of things. They submitted more blood and urine for more test on the 19th, awaiting those results.
We worked really hard at fundraising to bring Blue home. As a special Thank You gift for two of the highest donors, we had these made by L&E Creations (they can be found on facebook). We love these mini Brynn and Brett’s! We mailed out some other gifts (Bracelets, Shoestrings
and necklaces) to anyone who donated $250 or more. We learned a lot through this fundraising adventure and hope to help others reach their goals as well! We are so very grateful for the families that helped! We know Blue will be so full of love through everyone’s gifts and prayers! Brett’s new glasses seem to be helping him to see better. He still cannot wear them when
he is feeling seizurish, but when his seizure activity is down he doesn’t mind wearing them. He will return next month to have his eyes checked again. We are in the process of house hunting for a house in the country. We know it will do both Brynn and Brett good to get the fresh air and freedom that this city life cannot provide them! Things have been pretty busy with my volunteering for National Seizure Disorders Foundation, Wrapping up everything
to get ready for Blue and seizures mixed here and there. Expect that April will be an even busier month! Really hope by June we can breath some Country Air! 🙂 Brynn and Brett were recently blessed to participate in the Warrior Beads Program through http://www.1boy4change.org/
Chris and his Mom are a tremendous blessing and this is a great cause to donate to. They are a 501(c)(3) Charity too!
I was in tears when I realized the seizure count estimates. Anyone who knows me, knows that we don’t count small seizures. If it’s not a few minutes long I don’t journal them, except noting seizurish, cognitively slow or Aura. Brynn was not diagnosed until his 11th Birthday October 2010. Brynn’s estimated seizure total since diagnosis? 744. Brett was not diagnosed until he was 8, in
August 2013. Brett’s Seizure Total since they have been journaled? 434. I knew Brett had already surpassed Brynn in status events, and I also knew that his Epilepsy seemed much worse than Brynn’s was. I had no idea that either of their numbers would be this high. Our Favorite prior neuro had me give seizure counts at each visit to keep track, especially when we changed medications or doses. The
estimates are the total of 2014 seizures multiplied by the number of years since diagnosis. We will keep adding beads to journal the Dr. visits, Ambulance rides, blood test, EEG’s, Hospital Stays, surgeries and everything else that they go through. I bought some very special
beads. They are white but change into a color only in the sunlight. We will use these for SEIZURE FREE DAYS! This is a really neat way to keep up with any medical journey. What a blessing 1 Boy 4 Change is to have gifted our Epilepsy Warrior Boys with this! That catches you up! Will try to post again soon!
WoooWhooo Just 17 days till Blue comes Home!! Here is the
Amazon Home Coming Wishlist for Blue! We are so excited for
our Beautiful Blue to come home!!
Brynn and Brett LOVE getting the packages addressed to The
Epilepsy Warrior Boys for Blue, when you order through the
wish list they come straight to our door!! Take a Look at this
Oh… DON’T FORGET!! Thursday March 26th is Epilepsy Awareness Day!! 🙂