July 13-19, 2016 "Trouble, trouble, trouble!!"

It has absolutely been a horrible week! Rayden's feet have continued to slide in the AFO's terribly. His feet seem to be too small for them. I have tried thicker socks, gripper socks, and using two of the pringles that go inside them like a tongue in a shoe. I have even put gripper socks over the AFO to try and prevent the carpet from pulling on them. They are just not going to work. Now to make matters worse he has formed two pressure sores on his left foot. (top and bottom)

We decided to just keep the bar shoes on him during the day (without the bar). At least they fit and will keep his feet in the correct position. But they do not give him any support so working on standing is out of the question.

He isn't sleeping at night because he is miserable in the bar shoes. These things are borderline inhumane!! He sleeps on his side but with the bar keeping his feet shoulder length apart his foot is stuck in the air. I know that has to hurt his hips. He is up every 30 min. Therefore I haven't slept either. Rayden has never slept in my bed but I sure tried it this week to get some rest. Something has got to give!!!!

Dr. Cuomo has been in surgery so her nurse's response to all of this is "do whatever makes you comfortable." Well, I'm not comfortable with ANY of this! I'm so afraid he is going to regress. She said to make sure I continue his stretching a lot so maybe his feet will not tighten back up. He jerks and cries when I try. This is new because Rayden has never been able to feel his feet/ankles so why does he act like I'm hurting him? You can see his reaction in this video clip.

When Dr. Cuomo responded to all of my emails (4 days later) she said she thought Rayden was back in equinis, with tight calf muscles and achilles tendons. She believes he will have to have another surgery or do more casting to correct it!!

Just when I thought this was enough to drive me insane, I realized his right foot was swelling. It was so large that I couldn't get the AFO on or the bar boot. Later into the evening it had swollen to twice the size of his left foot. His little toes looked like they were going to POP off! His legs and feet were turning red and hot to the touch. Something else was going on! I sent the pictures to Mrs. Ruth (one of the orthopaedic technologists). She called me back immediately and said Rayden has one of two things, an infection or a fracture. 

She said we needed to take him to the emergency ortho department, Ortho Now, to get x-rays and be seen by a doctor immediately. X-rays revealed no fracture, thank God! The doctor diagnosed Rayden with cellulitis and prescribed an antibiotic (Keflex). Hopefully we have caught it before it entered his bloodstream and the antibiotics will work. If not, he will need IV antibiotics in the hospital. WHAT ELSE IS GOING TO HAPPEN!!!! This poor baby can't seem to catch a break! I feel like we take a tiny step forward just to FALL off a cliff backwards!!!!!!!

July 12, 2016 "Out of casts!"

Rayden was all smiles as we started our trip to UNC today. We have been counting down the past 12 days until Rayden could get these casts off. No matter what the doctor said, Michael and I decided that Rayden deserved a break from casts and they were coming off TODAY!! Of course we were praying that her last ditch effort actually worked and his left foot was in the correct position this time.

In this video clip you can see Rayden's casts being removed. He is always so brave. Most children scream and cry during this procedure. You can see the fear in Rayden's face but he is not screaming or crying. He is the toughest little fellow I know.

Dr. Cuomo said his feet look much better. She is still worried about the left foot though. She wants us to do lots of stretching to dorsiflex that foot. IF we can keep it this way then we will not have to do another surgery although she's afraid that left foot will give us problems.

Rayden got his new superman AFO's for the daytime. He also got little boots with a bar in between to wear at night. Everything was going smoothly. We were all so happy to be free from casts! The excitement dwindled within 30 minutes of being home though. Rayden started crawling on the floor. After being in casts for 11 weeks straight, his legs were very weak. I picked him up only to notice that his left foot had slid up in the AFO. I knew this was going to cause problems. After re-adjusting it numerous times I decided to send a picture to Dr. Cuomo hoping she would have some suggestions.

 

 

After dinner we decided to put Rayden in his little pool. He hadn't been able to even take a bath in 11 weeks, I knew he would enjoy this! It didn't take too long for him to start splashing away! 

I thought after this long, eventful day that he would sleep well, but I was wrong!! He absolutely hated these boots with the bar. He woke up every 30 minutes ALL NIGHT LONG!!!!!! He can't sleep! Now what? I pray that he will soon get used to them and that Dr. Cuomo has a suggestion to stop his foot from sliding in his AFO's. 

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.