First and foremost. I believe Adeline was born to us as parents and to a wonderful community of supporting friends and family for a reason.
Yesterday was a hard day finally getting an answer to Adeline’s medical mystery. This includes 5 ER trips, 6 seizure, over 20 appointments including a neurological specialist and finally a GeneDX panel.
Adeline has been diagnosed with Dravet Syndrome. I'm going to include a little information and a link that is full of great information.
Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. Previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), it affects approximately 1:20,000 children. While seizures persist, other comorbidities such as developmental delay and abnormal EEGs are often not evident until the second or third year of life. https://www.dravetfoundation. org
Since the diagnosis, we have been thinking about tools for alerting us in the moments leading up to or during a seizure. We have decided to bring sweet Willow Grace into play as we hope to train her as a seizure alert dog.
After paying for training and buying the supplies needed we will keep some money in an account to cover future vet bills etc. as well as specialist appt for Adeline if neefed we will donate any some funds directly to the Dravet Foundation. We will provide documentation of expenses on our updates as well as updates on training and our dear daughter Adeline.
We plan to use Donna Rodgers with Canine Capers who has worked and trained seizure alert dogs. www.k9capersTraining.com
As well we planned to work with KeenDog.
We will be starting with puppy class on Tuesday to graduate with AKC STAR Puppy. $85 for this program.
We will work with KeenDog for obedience and advance training.
The cost of KeenDog is $1,250.
We will use K9 Capers for seizure alerting after complete KeenDgo training. Cost of those is 10 for $250 and we are expecting at least 20 needed. These lesson will inluded everything needed in the aspect of a service dog including 'alerting'.
After the private lesson we will take our AKC Canine Good Citizen test and the Public Access Test.
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- Sheila Rodriguez
- Heather Arrowood
- Karen Gilsdorf
- Jessika Tucker
- Lynn Grotke
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