July 1, 2016 "Casting #21"

Rayden has been confined to these casts for over 2 months now (9 weeks)! He is so ready to be free. He has started pushing on them and pulling on his toes. He wants OUT!! We have been counting down the days until Rayden can finally get these casts removed for good. That day had finally arrived!! I was really afraid of what would happen though, because I received a call yesterday stating that his AFO's had not arrived! Without something to hold his feet in the new corrected position they would start turning back in (the nature of the beast!). The nurse suggested we just stay in the casts another week while we wait on his AFO's. Of course, we did NOT want to do that. Rayden has pulled his time. He deserves to be free!!!! After some 'confrontation' the nurse decided they would find something in the office to hold him until next week.

We arrived at our appointment on time but Dr. Cuomo was running over 2 hours behind schedule so we had to wait. I didn't really mind. We've been waiting 9 weeks to get these casts removed, what's another two hours? Rayden was the entertainment in the waiting room. He is such a little character. He was crawling around, smiling at everyone, telling them "Heah!" and laughing. Everyone seemed to enjoy watching him and it made the time go by faster. I also got in a little testimonial time as the conversations turned to me explaining his condition, doctor's prognosis, and God's miracles!

Waiting in the exam room for so long is a totally different story. I don't want Rayden crawling around on the exam room floor so we do just about anything to entertain him. A busy little toddler closed up in a tiny room makes some desperate silliness as shown in this video clip. 

Rayden was scared to get the casts removed but he didn't cry. He just held his Mommy tight. He's the bravest kid I know! As I was washing his feet and legs I immediately noticed his left ankle was still pointing downward (like he had on a high heel shoe). He even had an indention in the back of his heel. Something was not right. I started stretching it up like we used to do on a daily basis, praying the entire time that the doctor wouldn't have bad news when she saw it. But it didn't work!!!!!! Dr. Cuomo was not pleased with the left foot at all. She believed the continuous slipping of that cast and possibly incorrect casting has caused the scar tissue to heal in the wrong position. She says if we don't fix it very soon the damage is going to be permanent and she fears it may already be too late.

She had planned to put Rayden in the braces (boots) with the bar in the middle just until his AFO's arrived. The right foot is ready for braces but the left one is not. The braces are made for feet that are flat and of course Rayden's left foot is NOT flat right now. Therefore it would cause a lot of skin problems forcing us to remove them. This would leave the right foot without a brace compromising its' progress. (What a mess!)

When I asked her what we needed to do she hesitated for such a long time. I could tell she certainly didn't want to say. She looked up at me and stated that she would have to perform another surgery to release the scar tissue. Tears immediately filled my eyes as she jumped up and hugged me apologizing. "NNNNOOOOOO!! Why does this keep happening?" To make matters worse she thought the best thing to do for now was to put him back in casts for 12 more days as a 'last ditch' effort to fix it. She didn't seem very confident in this desperate final attempt working though. If this does not work, she said we had two choices 1-surgery, 2-just face the fact that his foot will never be right and make special fitting AFO's with one high heel.

Rayden never ceases to amaze me. He seems to just accept things and move on. (I wish I had half of his strength.) He just laid back and fell asleep as they placed casts #21 on his legs. Dr. Cuomo bent his left knee really far in hopes to prevent it from slipping this time. She even put indentions above the knee as another means of prevention.

As I sit and dwell in the fact that my poor baby is casted yet again, and possibly facing another surgery I feel so defeated. I was so excited to finally be able to work on walking with him and now... another set back!!! I just don't understand why these things keep happening. I am reminded that nothing ever goes according to the books where Rayden is concerned. As Dr. Elton told me when his ventricles wouldn't decrease in utero, "Rayden doesn't follow the text books. He writes his own book." I know I can't dwell in the negative and I'm reminded that this is not as bad as some people have it right now. I know all things happen for a reason and God has paved the road he wants Rayden to travel. I just wish his road didn't have to be so bumpy.