July 25--Rayden got custom molded for new AFOS that have softie inserts and will except some plantar flexion. Dr. Cuomo said although they will be less supportive when he walks, they will give his skin time to recover. In the mean time he doesn't need to wear anything on his feet because the skin needs a break.
Aug. 4--We got Rayden's new AFO's. I can already tell they are too big!!!! Mrs. Cathy, PT, used two of the large pringles in hopes to take up some of the space. There is no tread on the bottom so he is going to slip and slide on the hard wood floor! I AM NOT PLEASED!!! We leave to go on vacation tomorrow so I will have to handle this when we get back.
Aug. 15--I called Mrs. Cathy to inform her of Rayden's lack of progress with these new AFOS's. His toes were in the ankle section within two minutes of crawling. Therefore by the time he got somewhere to stand his feet were not in the correct position. She is ordering a new pair with less volume in the ankle and toes section. She is also suppose to be getting the tread put back on the bottoms. This will be the third pair of $2000.00 shoes within a month!!!! RIDICULOUS!!!!!!
Is it too much to ask for a pair of shoes that will hold his feet in the correct position so he can learn to walk? This is my precious angel and he deserves a chance to fly! My heart absolutely breaks for him. I find myself so jealous of other families with children that can walk. I know I shouldn't, but I can't help myself. I just want Rayden to be able to walk sooo bad. I want him to experience all the wonders of being upright and mobile, not just crawling on the floor. Don't get me wrong. I am super grateful for all he CAN do, and even if he NEVER walks I will love him no less. I suppose the aggravation of these AFO's is just causing me to be impatient.
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