Thursday, April 17, 2014


Luke has been doing really well.  He is on his full dosage of his new medicine.  His new medication was increased quite a bit and he's still on full dosage of his old medicine.    He's a little grumpy, drooling a little, and waking up some at night but otherwise OK.  He seems back to pretty much normal which is nice.  It's a little stressful since we thought he was doing really well when he had the last seizure but we have to find a way to take a deep breath and enjoy the peaceful time we have right now.  We follow up with our neurologist in early May which I look forward to.  It's always nice to sit and chat with him in person. Hopefully there's nothing new to report to him!

Chowing on cupcakes!
I always mean to write when Luke is doing well.  However, I seem to share when we're struggling mostly so I wanted to do an update while he's doing well!  He is almost finished with his first full year in preschool through the school district.  With his medical difficulties it certainly has been a rough year.  Our daycare, which also operates as a preschool, has been incredible.  Without them we would not have been able to send him to the school district school.  The biggest reasons I wanted to send Luke to the school district was to have his therapies and have smaller adult to child ratios to really encourage the social interactions.  Our daycare volunteered to take Luke back and forth because Dan and I couldn't do it.  Socially he is making huge strides.  I still wouldn't say he's 'typical' but he is starting to make progress.  He talks constantly about a little girl named Reham.  He keeps asking me to call her mom so they can have a play date and a sleepover!  He's totally skipping just playing and going straight to sleepovers! 

Today I picked him up from daycare I was told he took off his pants outside!  And he's been telling everyone that there is a 'hotdog in his booty butt'!  What!?  He's turning into such a nut. 

It's really nice to have places where we feel comfortable taking him during the last few stressful months.  I know that both of his schools are well equipped to handle a seizure if it happens to occur.  We are fortunate because the only babysitters we use outside of family are two women who have known Ben and Luke for awhile because they are teachers at our daycare.  They know him really well and I feel comfortable knowing they'd recognize behaviors that were out of the ordinary.  He has quite a team of people looking out for him!

Speaking of teams, I also wanted to update about the Epilepsy Walk.  We are SO fortunate because due to the love our family, friends and even strangers, we have already surpassed our goal.  The walk isn't until the middle of June!  I am overwhelmed and feel so blessed.  If you are planning on walking with us, don't forget to join our team before May 26th so you can get a Seize the Day t-shirt.  I haven't been able to personally thank everyone who has shared/donated/joined yet but I will.  In the meantime, please know how much it means to us.  I have big hopes of funding going to things like better medicines to control epilepsy and seizure detection devices that will detect the kind of seizures Luke has.  Together I feel like we're doing something really important for Luke and many others and that is an amazing feeling.  So thank you.