11/20/2022
We are working around the clock to get all orders completed as quickly as possible. For those of you who follow my personal page you are already aware of what we are facing, but those of you who don’t here is what we are facing in the new year.
I won’t be closing my shop but we will have some. Times when the shop will be closed, I have another local business who will be helping to cover while I’m in Baltimore with Emerson. My business is important but family is always first. Thank you all for always supporting our business and Choosing us to make your visions a reality!
Warning Long Post Ahead-
Many of you have asked how Emerson is doing. Three weeks ago she went for her sedated EEG, PET, CT and MRI at Hopkins. The hope of this testing was to help find some area limits of her seizures in hopes of mapping her brain and then in return a Stereo EEG a few weeks later to see how we can best help Emerson with her epilepsy as the medications are not working for her any longer.
After the day long of sedated testing we headed home and a few days later, received a call from one of her four main Neuro Doctors. Yes, she has a Neurologist, two Neurosurgeons and A Neurologist that just specializes in seizure mapping. She is quite a special little lady.
Dr. Marashley wanted to inform me that over 23 Neurologist met and reviewed Emmes case and they all unanimously agreed that there was no need to but her through the SEEG testing. While this is super exciting, I was confused as to why this was no longer needed. He then explained.
Emerson right brain is in a constant state of seizing and the medication is just helping at a bare minimum. She truly doesn't have a point in the day where she is not seizure free, my heart broke. Here we are trying our best to help her and all the while her brain is just not wanting to cooperate. The only option to giving Emerson a seizure free semi normal life is to disconnect the right side of her brain completely.
If you have made it this far, thank you. I know it is a lot to digest and I am still processing all of it. So please be patient we are trying our best to make sure we are doing everything we can to make our emme the best emme she can be.
More about the surgery, they would go in and remove a part of her right lobe so they could go in and disconnect the entire right lob so it would no longer be able to seize. It would be an in-depth surgery as she also has two shunts on that side that regulates her hydrocephalus. once surgery is complete we would be 2 weeks in PICU and then up to 3 months inpatient at KKI in baltimore so Emerson and I would be moving to baltimore once we have a date for the surgery.
We do not have a date yet just sometime after January 15., 2023. I will be starting a page called Unbreakable Emerson where everyone can follow this journey if they want to and if needs arise we will post there. Please keep Emerson, Elle, Kevin and Myself in your prayers. This is quite the "bump in the road" but Emerson is a warrior and I am praying hard that this is just what she needs to be the Best Emme she can be.
