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!!!!!!!