We are headed to Austin! Antonio is very excited for todays fitting. Antonio is a hard-charging, fast as lightning, play hard dude. He loves to be outdoors and in gym class and never gives anything less than 100% effort! Antonio gives it his all, because he doesnt want to miss out on the fun and playtime with other kiddos... He hates being told to slow down or put his feet up. Who does!? Playing is way better! Antonio had foot pain before...but it had subsided... Or so we thought. ROHHAD causes nerve and vascular pain in the feet...and the pain sensors refuse to turn off. Similar to diabetic nerve pain or neuropathy pain. No one really knows why... But its excruciating and can be debilitating. Recently we kept having to tell Antonio to get off his butt and go play, get up and do your chores, etc. By the time Antonio got home... he had already ripped off his shoes and compression socks and wanted to get in the pool always hoping it was ice cold. One day when he had sat on his bum too long... We told him to get up! And then.... He yelled out I cant walk! My feet hurt so bad I want to throw up. He was furious when he said it... Like an outburst that he had been holding it in for a long time. When we asked him how long they had been hurting he said they never stopped but I didnt want to sit down. He said he wanted to go to the pool because it felt like he was putting his feet in ice. He liked the water because it stops my feet from being ON FIRE and all the bones stop cracking. When the nurse asked him to describe the pain he said it was The kind of pain that makes him want to cut off my feet, carry me to my bed because if my feet touch the floor they will break, it hurts so bad that I cant feel them hurt... Its worse than hurt etc. He was asking for piggie back rides to his bed and Frank, his dAd, even had to get in the pool and put him on his back and carry him into the house. This is no small feat as Antonio is almost 140 pounds. When asked if he was ready to go to Six Flags or antique browsing (he loves that) he would say lets stay home. He had never told us why but when he finally busted out with the reason all the clues had been there... We simply didnt know the extent of the pain. He is extremely tough! Antonio then asked for a wheelchair because he didnt want the spaceship anymore (a stroller we used before when his feet hurt) and he wanted to do it myself!!! Antonio wants a chair that he can use when his feet hurt too badly but that will allow him to play hard, roll fast, and keep on moving! We recently tried a standard chair and it did nothing to help him get in his garden, through the house etc. It simply wasnt fitting him right or helping him go where all 8 year olds want to be... OUTSIDE! It was cumbersome and the tires were too slick. He tried it on the ramp going into his garden and it was an epic fail. So..... With the suggestion of a dear friend .... We are off to Austin for a custom chair to get Antonio where he needs to go. We as a family, with Antonio, have discussed what the rules of this new freedom will be so that Antonio stays as mobile as possible. He is only to use the chair when his feet hurt, purple or swelling. NO ONE is allowed to push him, he will need to be self-sufficient and learn ways to navigate with the help of his therapist. He will not be allowed to use his wheelchair as a speeding missile down the hallways at school, if he needs to use it during the school day. He can not pop wheelies, run over his siblings, and he is not allowed to run up behind his teacher and fake her out with a quick turn. A life in pain is not acceptable! He will be able to push his limits walking and running... But instead of sitting on his bum because of pain or trying to muscle through it... He can keep going pain free in his new wheels :) As he yells FREEDOM while rolling around LOL! Pictures coming soon. It will take insurance approval and then a couple weeks to custom make his chair but freedom is almost here!
Posted on: Tue, 14 Oct 2014 13:46:20 +0000
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