Help Leon’s family on this long term hospital stay

Hello, I am Josie. My son, Leon, was born and spent four weeks in the nicu to find out he Had Hypothyroidism, two holes in his heart, and a bump on his head. The bump on his head never subsided, and I begged doctors for months to figure out what was wrong. After deciding to switch providers, it was the best choice I’ve ever made. They IMMEDIATELY ran Leon down to the UW Children’s hospital where he had undergone two blood transfusions, and they preformed a small surgery placing a tool in his skull to measure pressure in his head. (Inter-cranial pressure monitoring). In the end, they discovered he had severe pressure in his head, causing the bones around the soft spot to “lip up” and never fuse. The bump is caused by the pressure budging the brain and fluid outward since the skull is unable to grow with his brain. The Neurosurgeon sent us over to see an ophthalmologist and that is when we found out he had a stage three to stage four Papilledema. With that being said, he was likely to go blind if we were not to find answers on how to fix the pressure in his head. After months of being on medication, they determined it was time to undergo a PVDO surgery. (Expansion of the skull). This is guaranteed to follow with a blood transfusion, and another surgery to re-open his head. With a POSSIBILITY of 3 more surgeries to help maintain normal pressure within his head. With 2-3 weekly visits for 4-6 weeks after each surgery. For those who know, we live two and a half hours away from the children’s hospital. That meaning, I will have to stop work to continuously be on top of Leon’s surgeries, and follow up appointments. If we were to make the drive each time we would average over 3,000/ month. We will be trying to stay at the Ronald McDonald House in Madison but, for all who know it is never guaranteed. Therefore, I will need to be living in Madison with my son in a hotel for up to 3 months while also covering rent, and all home, and food costs. We are asking for help so my son and I can live comfortably while his father works to maintain our home in de pere, so we can eventually come home worry free. With the left over money from all of the donations, I will be giving the rest to the Ronald McDonald house so it can help other family’s who are in need as well, so families who go through as much, or more struggle can have SOMETHING to rely on. Thank you for taking your time to hear our story, and we appreciate you all.