Hi, this is Brian. I know it’s not often I write on the blog. Let’s be honest, I’m more of a reader just like you. I’m grateful Niki spends the time to record our journey with epilepsy. It’s amazing to look back a year ago and see how far we have come. In fact, it was almost one year ago we got Cole's official Dravet diagnosis and started the fundraising effort for his seizure dog. Thanks to our families, friends, friends of friends, co-workers, strangers, and blog readers around the country, together we raised enough money to begin the training process for Cole’s seizure alert service dog. Cole’s service dog will soon be a reality – all because of you. Words will never be enough to show how grateful we are for your generosity.
I say ‘begin the process’ because we won’t actually get to meet Cole’s dog until the end of October. For the last several months, we have been sending Cole’s shirts to the trainers so his dog can know his scent after he has a seizure. Though we never like to see Cole have a seizure, it will help his dog become familiar with his smell and hopefully alert us before he has a seizure.
We are counting the days (as you can see to the right on the blog) until we meet the newest member of our family. We won’t know which dog will be Cole’s until just before we leave for training at
4 Paws For Ability.
In the meantime, we have a few hurdles ahead that really have us worried. Unfortunately, they are three major financial hurdles: the 2 week dog training trip to Ohio, a portable FAA approved oxygen concentrator, and a return visit to Miami Children’s Medical Center.
The trip to Ohio
Even though we raised enough money to train Cole’s dog (thank you again!!), we came up short for the trip. We’re driving so we don’t have the airline ticket or rental car expenses but we’ll have other expenses. We’ll spend about 2 weeks in a hotel so that will be the largest expense along with gas for the car, food, and dog supplies. We have a hotel reserved where most of the other families in our training class are staying since the hotel has been very accommodating to prior groups. We figure with the hotel, gas, food, and dog supplies, we’re looking at about $3000. The hotel is in the Hilton family. We’re open to people that are willing to donate some points. There’s probably nobody out there with 2 weeks worth of points, but we’d be more than happy and extremely grateful for any contribution toward our trip to get Cole’s dog.
FAA approved portable oxygen concentrator
Cole has to have oxygen available at all times. Sometimes his seizures cause him to stop breathing and he will quickly turn blue. It can happen very fast and some seizures are worse than others and sometimes he needs more oxygen than other times. It’s very random and completely unpredictable. The one thing we do know – he needs it ready and available always. We take it with us swimming, to the store, or anywhere else we go. It is located in two different places in our house and we also have it in our car. This is an added cost to us, even with insurance. We really run into problems if we are going to travel. Cole sees a team of specialists at Miami Children’s Hospital in Florida every six months. His first visit was a 5-day hospital stay in May. Each time he gets on a plane, there is the chance that he will have a seizure and need oxygen. You can only take special FAA approved concentrators on airplanes, and Cole's has to be continuous flow, because he stops breathing. There are only two models that do this. Cole needs
this concentrator. His doctor has approved it, written a letter and we have been battling with the insurance to try and get it paid for. Their response is to pay for it out of pocket, and
then they we can try and submit a claim for reimbursement – not likely to get approved. We do not have the funds to pay out of pocket for a concentrator, so it is costing us $500 or more each time we travel, just for special oxygen since we can’t take our own. We spent $1,000 in two months on travel oxygen, to move out to DC and to take him to the doctors in Florida. The travel oxygen rental fee ends up being far more than the price of an airline ticket. In order to buy an FAA approved, continuous flow, portable oxygen concentrator, it’s about $3800 – but it would save us in the end from all the rental fees.
Return visit to Miami Children’s
Since we’ve moved to Virginia, we are now able to take Cole to a specialized team of doctors at Miami Children’s Hospital. His
first visit was in May - a 5 day hospital stay - and he needs to return every six months. We are so grateful to the team at Miami Children’s. We have been so impressed with their level of care, knowledge, anxious concern, prompt responses, and the list goes on. These guys are the best for Cole. But just as a regular check up with your doctor is good, so is one with your neurologist – especially in Cole’s case since his seizures are always changing. We’re set to take Cole back to Miami in December. Three airline tickets, food, and rental oxygen add up. Thankfully we have health insurance that helped cover a majority of Cole’s very expensive first visit. But we still had some expensive co-payments since his visit was so long, he saw several specialists, had lots of tests, and much more.
It’s difficult writing this. It’s hard to ask for your help, especially since so many of our family and friends and others have already donated. We couldn’t have made it this far without you. Cole's care is complicated and ever-changing. It’s expensive, even with insurance. But we do know we’re in the right place. We are where we supposed to be. More has happened here in our first six months than in the last three years with Cole’s care. Since we moved, Cole has a nurse during the day; has been accepted to the school district’s special education pre-school program –he starts next month, he’s having fewer long major seizures, and we’re able to get out a little more (but armed with rescue medication and oxygen).
We’re trying to do all we can to give Cole the very best to fight for a better day, every day. It's hard to see him suffer on a daily basis but his smiles, laughs, and hugs make it all worth it. I’m holding down one job and looking for another, hopefully teaching part time in the evenings. If nothing happens, I’ll keep searching and looking, even working at Home Depot if I need to.
Above all, thank you. Thanks to all of you who have helped us. Cole would hug every one of you if he could, and so would we. Thank you again to those of you who have been generous. Thank you for your sacrifice in our behalf. We recognize and appreciate our loved ones and others who have already given so much. We have learned some amazing life lessons along the way in our journey together. Our eyes have been opened to the goodness of people’s hearts. It’s humbling to see how many people really do care. It’s sometimes harder being served by others than giving the service. I’d rather give, give, and give. And we hope to give back as much as we can for the rest our lives and pay it forward. If you or someone you know is able to contribute to Cole’s cause, thank you so very much! You can use the “donate” button at the top right of the side bar, you do not have to have a PayPal account. Or if you have another way you’d like to donate, please email us:
epilepsywarriors@gmail.com.
Even if you’re not able to donate or are one of our many previous generous donors, please keep visiting us on our blog. Thanks for your interest, concern, and encouragement. You are part of Cole's success and happiness. Thanks for your prayers. We feel it and need them every day. Those are things money can’t buy and we’ll be forever grateful for.
Thank you, and may God bless you.
