Trip to Boston Children’s hospital

Hello as most of you know Easton has had a lot of struggles medically over the last three years.His health and development started to take a turn in 2020 he started to lose his ability to speak,started having seizures,and started to lose his ability to stay hydrated and eat.He became malnourished and diagnosed as failure to thrive and lost 20 lbs in a month.He was in and out of the hospital and eventually got a gtube to help with hydration and nutrition.He see’s a neurologist and has been on quite a few seizure medications and he’s currently still not seizure free.We’ve seen both ou children’s neurology team and integris,his neurologist recommended the Mayo Clinic because he’s stumped just as we are as to why Easton has had such a decline.Easton use to be an average little boy with just a few delays developmentally but nothing too bad, he has since lost his ability to speak to us,sing songs,read books,dance to music,and play with toys.I can’t remember the last time he said Mama it’s been so long.He’s currently struggling to keep on weight.He has pain most days he has gone up to 8 hours crying non stop,I’ve taken him to the hospital numerous times and they never do anything for him.His eyes dilate randomly.He’s had complete right sided weakness where his arm and leg stop working all together he has to be picked up and laid on the bed until it subsides he doesn’t understand why this happens and still tries to walk but can’t.He has days he won’t sit or lay down and doesn’t want to be touched at all because he’s in pain.He only sleeps 3 hours a night we are very lucky for him to sleep 6 hours one night a week.When he’s in pain he’s gone up to 72 hours without sleeping.The Mayo Clinic found he has elevated numbers for inflammation of the central nervous system so that means his brain or spine or both are inflamed.They couldn’t find a reason genetically for this so the search for answers has gone stale at the moment,so we are now going to go to Boston Children’s hospital in Boston Massachusetts.They are the top rated pediatric neurological team in America.We will be traveling by car and will need to stay at a hotel for one night at the halfway point for the trip down there and the trip back,if possible we are going to see if we can stay at the Ronald McDonald house in Boston if they have availability,we basically are needing funds for gas and hotel stays.If you’ve made it this far thank you and any of your help is greatly appreciated ❤️ Thank you very much from a very worried and tired but determined Mama.