The Merritt Movement

Follow our journey of unknowns, uncertainties and joy. Rare genetic deletion never before recorded - 9q21. #raredisease #autismawareness

[The Merritt Movement @MerrittMvmnt]

Going to try and share some of the in’s and out’s of an #EEG monitoring stay here at @MottChildren over the next few days on this thread to hopefully remove some of the unknowns of the process for those that may be facing a similar stay in the future. #epilepsy #EpilepsyAwareness

[The Merritt Movement @MerrittMvmnt]

We cannot wait for tomorrow, the stage is finally set for the first ever Special Olympics Michigan Area 11 Cornhole Tournament presented by The Merritt Movement!

It has been amazing to see the outpouring of love and support for these athletes by so many in our community.

[The Merritt Movement @MerrittMvmnt]

What better way to celebrate #AutismAcceptanceDay than outside, crushing confetti eggs and squealing your little heart out!
Thank you for letting us be a part of your amazing world. And unknowingly making ours a better place to live! You are our daily motivation to find more joy

[The Merritt Movement @MerrittMvmnt]

Back home and starting to recover/acclimate to being off the monitoring equipment. Quite unstable after not walking for around 9+ days. Hoping to hear more soon on results

Thank you again to everyone for the continued thoughts and prayers, they mean/do more than you know! #EEG

[The Merritt Movement @MerrittMvmnt]

Our greatest takeaway is to simply ask. Ask questions, ask about possible solutions that the team may have in mind - it truly is a collaborative process. Hope this helps answer some questions that someone may have out there - Wish you all the best in your own journey!

[The Merritt Movement @MerrittMvmnt]

Going to try and share some of the in’s and out’s of an #EEG monitoring stay here at @MottChildren over the next few days on this thread to hopefully remove some of the unknowns of the process for those that may be facing a similar stay in the future. #epilepsy #EpilepsyAwareness

[The Merritt Movement @MerrittMvmnt]

From there, it is a little (or lot) bit of hurry up and wait, we try to emulate as much of her day to day scenarios as we can to try and spark an event. The staff is extremely supportive and have great resources they can employ to help in this process, such as this sleep safe bed

[The Merritt Movement @MerrittMvmnt]

Day 6: Still hanging in here at @MottChildren waiting for breakthrough seizure activity to be captured. Added sleep deprivation and step down in medication doses to try and instigate activity. Thank you again to the incredible staff here. #EEG

[The Merritt Movement @MerrittMvmnt]

We took Merritts toys away and made her do some schoolwork. She can’t articulate her feelings but I’m pretty sure we received the message.. loud and clear!

[The Merritt Movement @MerrittMvmnt]

Thank you again to all of our support network, it means the world - and, as you can see Merritt is loving a little bit of ‘quiet time’ 😄

[The Merritt Movement @MerrittMvmnt]

So sorry we’ve been dormant for so long. Has definitely been a busy few moths for Merritt - including our check-in yesterday to our home away from home @MottChildren! We are continuing to monitor her new breakthrough seizure activity via an extended #EEG stay.

[The Merritt Movement @MerrittMvmnt]

We cannot say enough about the staff and support teams here, including the accommodations they are able to make for their patients, like the sleep safe bed they were able to provide for Merritt. Hoping for answers over the next few days.

[The Merritt Movement @MerrittMvmnt]

right place at the right time with the amazing team here at Mercy Health, and we know none of this happened by chance.

We are so thankful to the team here and to everyone who offered prayers and support over the last few days and to our amazing family and friends!

[The Merritt Movement @MerrittMvmnt]

Monday was truly one of the most amazing yet terrifying days of our lives. Merritt’s baby brother Whitaker Wright Smith made his appearance Monday afternoon and is doing incredibly well. He has been so happy and content, but may have inherited some of his other sister’s judging

[The Merritt Movement @MerrittMvmnt]

moved quickly to save baby and then went to work to try and stabilize Jordan. After an hour+ of surgery and blood transfusions they were able to stabilize her. Her doctors later told us what a miracle it is that they are both here.

We were incredibly fortunate to be in the