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It's been a while since I've blogged...we have been super busy trying to get Cole's behavior issues under control as well as his NEW seizure type. YES!...ANOTHER NEW SEIZURE TYPE! How is that even possible...he now has had every seizure type known to man. It's been extremely devastating considering everything he has gone through. We have exhausted every medication and treatment. Actually that is not true...there are 3 other being the ACTH steroids which are very costly and the VNS which doesn't really help with the type of seizures he has. Cole was ALMOST 2 years Seizure-Free after his brain surgery. We knew it was a possibly of them coming back during a puberty. But, he's not there the Neuro thinks it was because of a growth-spurt and now we are desperately trying to stop them again. 

If you are NEW to Cole's is the run-down:
He was seizure-free for almost 2 years. He started having head-nod seizures and recently (last November) he has started having grand-mal seizures which has been devastating after all that he has been through. Cole continues to be hand-fed & diapered by us, and requires A LOT of care. He is non-verbal but has recently started to copy simple words!!!
There will also be a bathroom with a very large counter/changing table where we can ACTUALLY change his diapers & sanitize it. Currently we have been changing his diapers on the floor of our very small bathroom...he basically ends up laying in the hall & it is SUPER difficult to change him. It will also include a Kitchen/Family Room area & Laundry Closet. 

Cole was born healthy & happy, meeting all of his milestones. At 10 months old he started having 100’s of seizures A DAYHe developed A-tonic drop seizures & Absence Seizures as well as a rare & catastrophic syndrome called Infantile Spasms aka "West Syndrome" & Epileptic Encephalopathy. Cole started regressing developmentally & is non-verbal; he has a lot of mental & behavioral issues. Developmentally he is 10-24 months old. For YEARS his doctors didn’t know what was wrong with him and didn’t know how to treat him or help him. In 2011, we flew across the county to the Cleveland Clinic in Ohio & found a wonderful neurologist who discovered that his left temporal, occipital & partial lobes were malformed aka "Cortical Dysplasia". He had brain surgery to remove those lobes…almost ½ of his brain. 

We have been stewing over how we are going to continue to take care of Cole as he gets older & as we get older. Having Cole go to a "group home" is out of the question...we have talked about this a lot, and we as Cole's parents have decided that the BEST place for him to be, is in our home. We are aware of how hard it will be. But we have come up with a "plan". We are adding a Legal Accessory Apartment above our garage. The city we live in closed the Apartment Applications for a while (meaning you couldn't apply to add a Legal Accessory Apartment). A few years ago, they opened the Apartment Application up again. The apartment will be a 671sf…2 bedrooms (one for Cole when he turns 18 and one for a "respite" worker that will help us care for him while we are gone during the day...that means I could actually work again). 

Until Cole turns 18, we will rent out the apartment & use that rent money to pay for attorney fees (we have to hire his OWN attorney to get "guardianship" BEFORE he turns 18 which will be very expensive as well as a Special Needs Trust AND all of his medical/therapy bills). We are also hoping we will be able to fund a Special Needs Bicycle that we can cart him around in as well as other “adaptive equipment” with the income from the rental as well. Cole has VERY expensive needs and this way we can meet his current needs as well as his "long term" needs of staying in our home. 

I've always been extremely anxious about how we are going to continue to take care of his needs. Ever since we came up with a "plan" I have been much more confidant and less afraid for the future.

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