Posted on November 28, 2017
So, yesterday was her Neurologist appointment with the amazing Dr. Maertens, and I have to say, I left feeling pretty good!
After discussing her symptoms and when they start coming back based on her last IVIG infusion, he will be scheduling her for IVIG every 3 weeks! This is what I was hoping for since the symptoms start showing up right before 3 weeks.
I did ask him, "based on her diagnosis of OMS with the cause being neuroblastoma, what are her chances of remission?" He said that they are just like any other OMS child and it's all how they react to treatment. Which we already know that IVIG is doing amazing things for our girl, so we're remaining hopeful.
Now, he did say that because she was diagnosed with Opsoclonus-Myoclonus due to Neuroblastoma, that this makes the chances of her cancer coming back LESS!! So, because her cancer caused her OMS, the OMS makes it more likely of no reoccurence!! Even though we're going to continue to fight, at least it's not cancer and we know how tough our girl Is!
He is sending a referral out for not only Physical and Occupational Therapy, but also speech!! (Something I couldn't get her last Neuro to do because "she's too young") So, we're hopeful with PT, OT, and Speech therapy our girl will be a walking, talking girl in time!
She's also FINALLY put on some weight and weighs 18.5lbs. Apparently a pound for every month she is, but we'll take it because it shows progress in the right direction!! We will have a follow up with him in 3 months to see how she's doing.
Also, her next MRI under sedation is scheduled for December 18th! Please pray it comes back with no reocurrence!! And as always, thank you for supporting us through this crazy journey!
#RyleighStrong #OpsoclonusMyoclonusSyndrome #ILoveA1in10MillionKindOfKid