March 5, 2020 Update

A few weeks ago David turn 10! Funny story about David’s birthday: He was born on February 13th, but at the time, my husband was deployed in Kuwait, which means that to my husband, he was born on Valentine’s Day! Our little love baby celebrated his 10th birthday at school, and then on the weekend we took him to a place that has arcade games, mini golf, go carts, laser tag, and lots and lots of pizza. We all had a blast!

David has been home from school most of this week and last week. Between a Depakote increase, a Lamotrigine wean, behavioral issues due to these adjustments, and seizures, it’s been a rough couple of weeks.

On Saturday we took the boys to the zoo just to get out of the house and give them something fun to do. Take a look at the fun pics they took!

Earlier this week the boys taught their Boy Scouts troop about epilepsy as members of the Epilepsy Foundation Kid’s Crew. The boys earn a pin for every advocacy requirement they accomplish, and were so excited about spreading awareness. Gabe did most of the presentation, as David had a seizure earlier, but they did a wonderful job!

To find out more about Kid’s Crew, visit https://www.epilepsy.com/make-difference/get-involved/kids-crew

Tomorrow after we pick up Gabe from school, we plan on driving to Arkansas. We’ve rented a cabin in the Ozarks and will be spending spring break there with my parents. Even though David is having seizures, we know they are due to the wean, so we feel confident that he’ll be okay travelling. The hardest thing about these weans is that they leave Jonathan and I absolutely exhausted. We get so little sleep. David has been sleeping in our room with the pulse oximeter on, which does help, but just knowing that he’s having these clusters of seizures puts us on alert. Thankfully the pulse oximeter has given us a little more peace of mind.

We are looking into getting David a seizure dog. We know they can be upwards of $40,000, so we’re hoping to get information on grants and/or fundraising. These service dogs are trained to help lower the person to the ground when having a seizure, alert someone for help, carry medical information to professionals, sense a potential seizure, and keep the person safe during the seizure. All of which would automatically increase David’s safety and give us peace of mind. We’ll update you with more information on that once we have it!

In the meantime, though we face difficulties with this disease every day, we want to take the time to acknowledge and celebrate the improvements we have seen in the last 3 years! God has brought David so far! This whole process has been a feeling of 1 step forward and 3 steps back, but through it all God has been faithful. We are thankful for His goodness and love, and for the continued love, support and prayers of our friends and family. Thank you all for being on this journey with us!

03/04/2020

1 comment on “March 5, 2020 Update

  1. Bless you. You are doing great.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: