Support Maximus Surgery with Left Lambdoid Craniosynostosis

Hello it's the Scott Family. We have never done this before. Asking for help is hard but its for our sweet boy Maximus and getting him the help he needs. Max is 5 years old and getting ready to go into kindergarten this next school year. He is such a handsome, funny, and sweet boy. He is all boy and enjoys wrestling his brother and picking on his sisters. Max also love to help people and cook. Before he turned 4 we got a new pediatrician. When I was explaining to him his history and any concerns, I mentioned his shape of his head. It's always been a bit lop sided. His doctor was never concerned and we had no idea about Crainosynostosis. His new pediatrician listened and helped us. It led to MRIs, Eye Doctor, and referral to Plastics and Nero. His diagnosis is Left Lambdoid Craniosynostosis. Which is super rare but its where his left suture had prematurely closed when he was in my belly. It is often misdiagnosed for Plagiocephaly (which is the term for flattening in back of head). After being new to all of this and learning all of this we were a wreck. We immediately went to researching everything that we could an joining all of the Facebook groups, talking with other moms etc. When we had our appointment with plastics after diagnoses Dr. said he needs surgery. They really pushed surgery and also said it is cosmetic at this point but also it would help any ICP (increased intracrainal pressure) he could have or have down the road. When before getting diagnosis they never mentioned surgery said well lets get it checked out and maybe he just has a lop sided head for life. This scared us and we didn't feel comfortable being pushed so soon after dignosis when we still had so many questions. This was all so new and we wanted to make sure we did our research and got another opinion. We then talked with neuro he said he was fine and looked great. That it is a big surgery but he sees nothing wrong other than lop sided head. He said he could have no symptoms his whole life. He also said he didn't have Chiari malformation. Which is a question we had and this comes with alot lambdoid diagnosis. Chiari Malformation is a rare congenital condition in which the brain tissue extends into the spinal canal that causes severe headache and neck pain. We were determined to get a 2nd opinion. So after talking to some moms and following their kiddos journeys of getting surgery. We got a 2nd opinion from a specialist in Texas. Video call was him telling us right off the start Max does have Chiari Malformation. Also recommended doing CVR which is a Craino Vault Remodeling. Taking the head where is bump is and turning it around. This will allow his brain more room on the side that has been pushed down from the suture being closed. He recommended doing the CVR and decompression of Chiari. As big as this is and overwhelming everything is talking to this Dr. made us feel better and at ease. He gave us all direct answers but wasnt pushy. He has done many surgeries and helped so many kids. We believe he was put in our path for a reason. He was so informative and helpful right off the start emails and the video call. So now we decided to set up this gofundme to help get him his surgery. This will allow him and him brain to grow and for him to be able to get the best chance at not getting symptoms he may get down the road especially with growth spurts to hopefully never have issues. To help with pressure on the brain, they say he doesn't have any right now but sometimes you cant see until your in there. As he doesn't have symptoms now we really want to give him the best to not and praying he doesn't ever have to go through anything ever again. The 16,000 is just to get him his surgery its not including the traveling to Texas, time off work for mike, and what insurance wont pay. ( hopefully they can cover it but we are still obligated for the $16,000 to book and get surgery. Again we hate asking for help but its for our kiddo Max and being a stay at home mom and mike the only one working we are pretty tight on money as is. We are still new to all of this and just want to get him the best help from a great doctor. Trying to get this done sooner than later esp. with him going into kindergarten and being a boy we want him to get back to doing what he loves. Biking, swimming, wrestling, and all the crazy boy stuff. Honestly anything helps and is more appreciated than anything. Please keep him and our family in your prayers. When he gets the surgery we will make sure we make a page and document our journey. Thank you.