Remy's medical expenses

When Remy was 6 weeks old he started having seizures and after 2 weeks of me taking him to multiple drs, and the ER, he was diagnosed with epilepsy. The next year of Remy's life was a constant in and out of the hospital. We would get home with a new medication that would help for a couple of days and then he would start having cluster seizures and have to be taken to the hospital by ambulance, and the process was started all over again. Remy spent more of his first year in the

 hospital than he did at home. During this time we were going to Pittsburgh children's hospital, by the time we left Children's they had Remy on 7 seizure medications at the same time and on the max doses. Even with being on all of this medication Remy was still having up to 100 seizures a day!!! Epilepsy is a terrible disease because not only do you have to helplessly watch your baby suffer with a constant onslaught of Seizures but it also causes them to loose skills and since Remy was so young when his started having seizures the only skill he had was smiling and laughing and with each seizure and each new medication we saw him smiling and laughing less and less until he eventually stopped doing it altogether. We left Pittsburgh children's hospital when Remy was about 8 months old, after they told us there was nothing more they could do to help Remy and they were out of treatment options. I refused to give up on my 8 month old and just write him off as a lost cause, so we found another hospital in Columbus ohio, called Nationwide Children's Hospital. Finding that hospital has been a God send, they took one look at Remy and knew he was on way too much medication and started taking him off of them right away. They performed their own testing and found out that Remy's left hemisphere of his brain did not form correctly and was causing most of if not all of his seizures. So the day before Remy's first birthday he went into major brain surgery. His surgery was called a Functional Hemisherotomy which is when they disconnect the left hemisphere of the brain from the right hemisphere and they also removed some portions. The surgery was 13 hours long and we had a 2 week hospital stay afterwards. Since then it has been a lot of back and forth to Columbus which is about 3 and a half hours away. Remy still suffers from seizures so he just had 2 more surgeries to place a Vegas Nerve stimulator and to put in a gtube to help with him gaining weight since Remy can only eat pureed food he has a hard time gaining weight. We have to go to Columbus a lot and every time we go out Dave has to take a day off work, and with gas prices it just keeps getting more expensive. We have been out 6 times already in September for various appointments and as Remy gets older and his care gets more complicated we are looking at a lot more trips and more equipment we are going to have to get. Right now Remy can still use baby equipment but he is almost grown out of most of it so we are going to have to start getting equipment from special needs stores which are outrageously expensive and insurance will only cover so much. We try our hardest to provide Remy with everything that will give him the best quality of life but with the inflated prices of every thing that has to do with special needs it makes it difficult.  Remy has been through hell in his short 2 years on this earth and through it all he still has the best disposition and the biggest smile!!! We just want to make sure the rest of his life is as easy and pain free as we can make it.