Several of our friends and community members have worked together organizing two fundraisers to apply directly toward the medical expenses incurred during Avery’s GBS this year. There will be a pancake breakfast on Saturday morning at Our Lady of Fatima, followed by a bike ride at Ritter Park led by our Critical Mass organizer, Joel, and bicycle raffle drawing thanks to a donation from Huntington Cycle & Sport. The generousity of everyone ceases to amaze us. We are indebted in gratitute to everyone. Even if you haven’t said as much, I know you are thinking of us, I can feel it.
If you would like to participate tomorrow, June 8th, more information can be found below:
Saturday’s events follow two other fundraisers held while Avery was at Children’s Hospital. The first, a benefit concert at Marshall University was organized by Ella Clark and helped us with over $200 in transportation and lodging expenses. The second was a gaming marathon sponsored by the Marshall University gaming club that successfully raised enough money to present Avery with an Xbox Kinects system and several games to use as part of his home phsical and occupational therapy.
All of these compliment the many personal care packages, gift cards, meals, and child care provision provided by countless people while we were in the hospital. I think I have sent out 50 thank you cards to date, with so many more to go.
The feelings behind these gestures and sentiments fluctuate between embarrassment and heart pounding love. With so much need and travesty in the world all these people have chosen to spend their time and energy on us, on Avery, on our community. It’s inspiring and motivating and overwhelming. It’s also difficult to be on the receiving end of such gifts. Perhaps it’s just me, but I flush with embarrassment for being in this situation, some how feeling that perhaps a series of different choices would have avoided such hardships, hardships that in the “big picture” are nominal. Please know, as I have tried to convey with a lot of sincerity, that you may never know how much all of this touches us deeply and we are grateful. We hope we can continue to give back to you all with our work and our efforts within the community and amongst the world.
Avery is getting stronger every week. He continues 2.5hours of therapy twice a week at Milestones Physical Therapy in Hurricane, WV (30miles from our home). He gets to Challenger Baseball at the LL3 fields as often as we can take him. He does his home therapy as we can get it worked in, and he is enjoying a mostly typical summer break from school. Having missed almost half of Kindergarten didn’t set him back, thanks to having an onsite teacher at Children’s who worked with our school, his tutors, and his own resolve to stay on top of his work. Avery is walking with the help of his AFOs, and has some time out of them as well. He has some foot-drop issues, but we feel those things are slowly resolving as well. The EMG showed continued signal delay in his nerves at the end of May but ruled out his condition as being chronic. He is continuing to take 50mg of Lyrica twice a day for nerve pain.
We tell our children that we won’t give them a hand unless they are showing effort to help themselves. It’s not a hard and fast philosophy, but it works for many scenarios. I wanted to let you know some of the things we are doing to help ourselves through this year financially. Our emotional and physical efforts are another story.
To start, Brent took on a summer job with a company as a contract employee. His chair also helped him secure his summer class at Marshall, which pays above his regular teaching position. We also applied for financial aid at the hospital and other medical facilities that offered it. We are still waiting to hear back. We set up payment plans where we could and double check every EOB with every bill and call back to our insurance if we are in doubt about the coverage provided (or not provided). It’s messy, but overall our health care insurance has picked up a substantial portion of our costs. The Lyrica is only $150 month, they approved most of our Ohio doctors and stays as in-network, and they covered our wheel chair rental as well as other equipment costs so far. The tricky part is going to be when the fiscal year ends June 30th and we have to start over with our deductibles while continuing to go for follow ups and therapies. Yet, we did this in 2010, with a newborn, and we will do it again in 2013, with all of you at our side. Thank you.