June 2018

Well, school has ended, and we just returned home from our family vacation.  We road-tripped to Texas, and on our way back stayed in Louisiana a few days, then in Siesta Key, Florida.  Overall, it was a much needed, relaxing trip.  We were able to get our minds off the every day struggles we face with F.I.R.E.S., which was a benefit for all of us.

Here are a few photos we took during our vacation:

35241499_10104096590077785_6584088661795536896_oThe boys really enjoyed the dinosaurs!

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35357184_10104096779518145_2084069349227757568_oDavid is super into ancient Egypt, so he was stoked to see this exhibit!

35223021_10104101742936415_6627452468387119104_o

Road trippin’ with Bat David.

35734879_10104107183283915_1492900580203429888_o

Watching The Incredibles!

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Siesta Key, Florida.

Before the end of the school year we reached our goal dose of Lamictal, and successfully weaned off Clonazepam.  We then tried weaning Topamax.  We were able to go down by one pill a day, but when we continued the wean David had a seizure, then 6 days later another one.  We stopped the wean so we could go on vacation without worrying about seizures.  Now that we’re back, we plan on starting the wean again, but this time instead of going down by one pill every two weeks, we’re going to try going down by half a pill every two weeks.  Hopefully we are able to get farther with this wean.  What we are really looking forward to is weaning Briviracetam.  David is on 10mg twice a day, and unfortunately, this medication really messes with his personality.  Even if we can’t wean completely off this medication, we’d like to get as low as we can with it.

*Side note:  We have been super blessed with David’s neurologist.  She is so supportive, and never makes us feel like we are just the parents.  Seriously, she is just an amazing human being.*

One of our primary goals, now that we are back from vacation, is to build David’s confidence in reading and writing.  Before he was sick, reading wasn’t exactly his favorite subject, but now, with everything that has happened in the last year and a half, he has fallen behind.  He’s a really smart kid, and does well in math, but reading and writing seem to be the bane of his existence. We hope that by the end of the summer, David feels more comfortable with reading and writing and feels equipped to do well repeating second grade.

Please continue to pray with us that David is completely healed from F.I.R.E.S.  We know that God has a plan for this kid.  Our desire as parents is just to see him happy and healthy.

Thank you for continuing to walk this journey with us.

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