Welcome to Rayden's page. Here you will find a story of our sons journey with Spina Bifida. There have been many challenges and struggles through the years but it's been worth it! I have tried to keep this blog updated. It might be easier to navigate by using the side bar and looking for specific dates or posts. You can even use the search engine for something specific. I welcome comments as well.
We never allow Rayden to stand without his AFO's on but I wanted to get a quick video to prove how bad his feet have gotten. As you can tell in the video, Rayden's feet turn in terribly when he stands up. It has gotten worse over this past month. He is now actually standing on his ankles, not the bottoms of his feet. When we straighten his legs and put his feet in the correct position his legs buckle and he just falls down. He cannot continue to stand and walk on his ankles, they will not be able to support his weight. For this reason, we are actually relieved that he is getting casts today. We have to get this process started or it will never get corrected. And what a long process it will be...
Rayden was all smiles as we arrived at Dr. Narotam's office, which is nothing unusual for him. When the word got around that he was there all the staff came out to see him. He greeted everyone with his signature grin and giggle. (Yes, Rayden is a celebrity, haha.)
We took x-rays of his legs first. The technician let me see them before she sent the films to Dr. Narotam. I'm not a doctor of course, but it sure looked like his tibia's were curved slightly. Dr. Narotam didn't show me the x-rays. He just stated that it showed some frontward curvatures not sideways bowing. He said they are not bowed to the sides although it may look like it when he is standing.
Rayden cried for the first 5 minutes of casting. He was so frightened. Who wouldn't be? He was being held down on a flat, hard bed with five heads standing over him. The nurse gave us some toot sweets (sugar water) to squeeze on his paci and he didn't make another sound the entire time!! When it was all over Rayden just looked at his legs kind of strangely. He rubbed the hard, heavy, red fiberglass and actually smiled. Can you believe it? When we got home he wanted to crawl but just couldn't figure it out. The fiberglass was catching on the carpet, and slipping on the hardwood. I ended up putting some long socks over the casts to help. Of course he wanted to play with his Daddy and I caught an adorable video clip.
Saturday, April 30
Rayden has had a rough couple of days adjusting to the casts. He has been just lying around, hugging a lot and sucking his paci more than ever. The casts weigh about 1lb a piece. There is also a slight bend in the knees. This makes it extremely difficult to crawl around and almost impossible to stand up. But I know he will find a way to adapt, he always does. I was told Spina Bifida children are the happiest and most determined people. I am seeing that first hand in Rayden. In only two days he is crawling the length of the living room.
