Hello I loved youre story and i can completely relate.My 10 year old was born with a heart condition and wasnt suspose to live over a week or 2 and trying to save would be a waste because he would be blind and deaf so the doctors wanted maesure his quialty of what his life would be.of coarse you know no mother will listen to that so i found a dr that do his heart surgery.He is legally blind and has to wear hearing aids for the rest life but like your son he is happy and loved I think more than a normal child.He can play all day go to school and he even has chores.I love everything he does and we work on what he cant.He gave has so much happiness to my life and touches everyone he comes into contact with.I dont have advise that will change the world but you dont sound like you need it.The only thing is that youre right you know your child and doctors arent Gods they dont know everything.We are all learning.That is What I think life is mostly about. You have a beautiful son.
Your story also touched my heart. Our daughter Addison is 6 on Tuesday. We realized at 4 month she was not hitting milstones or tracking. Then at 6 months she begin having infantile spasm (sever seizures). In a world wind trip to the ER and sent away to Cooks Children's Hospital, it took only 2 days to be told she had pachygyria, a sever birth defect of the brain. We gained control of the terrible seizure at a very impressive rate. Our nuerologist said he could not predict her abilities. She has developed at a slow pace crawling at 18mnths, walking and potty training at 4yrs. Her vocabulary is also delayed, however each time we visit the neurologist he is amazed at her progress. We had been told yrs ago we should expect seizure to come back and they did 1.5 years ago. We recently spent 1 week in the hospital to see how we could get control over her seizure since we have exhuasted most meds. While there we discovered the severity of her brain, after 6 days of test they had determined 90% of her brain was effected by the malformation. They too can not explain how she is functioning and progressing. We too have never treated her differently, nor put limitations on her and she just keeps pressing on. She is a very happy girl with very little discipline problems. She has really dodged many worse case scenerios. We will meet Monday with a team of specialist to see how they are going to treat her seizure...I see surgery in out near future! She is truly our biggest blessing and can't believe God chose us for her. After reading your story I can completely relate...I never knew what living was like until she was born...I see, feel and hear more clearly than I ever have only because of her. you can find me on fb under Jackie Ramon Bauman.
hello heather, chase, and the britton family,my name is summer. my daughter isla is 16 months old and has ponto cerebellar hypoplasia. chase is amazing. you are all amazing. i would love to be able to talk to you. just to compare notes. see if you are doing anything we are not and should be. i am talking about creating a sensory/ therapy room for isla and would love to know what you have done. i have a blog: www.bloggingsofamom.tumblr.com please check it out and contact me so we can talk. thank you so much. and chase you are amazing! you give us so much hope. thank you.
My youngest daughter is just a few weeks older than Chase, has has LCA (retinal blindness) and Joubert Syndrome (malfomation of the Cerebellum) She exceeds our expectations everyday, yet we find new challenges everyday, too. Seeing your story on-line reassures me, seeing other parents and other children, in similar circumstances. Even though it may not be his diagnosis, organizations like the Joubert Syndrome Foundation may have some good info for you,as well.
Hi My name is Jenna and I came across your site. Chase, is an amazing, courageous, strong and determined fighter. He is a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening bone disease and developmental delays. I love it when people sign my guestbook. www.miraclechamp.webs.com