May 1, 2015 "Checkup"

Rayden had three appointments this week as well as Physical Therapy twice. 

1-Orthopaedics- I was so convinced that Dr. Narotam would allow Rayden to receive his braces today. (The shoes with the bar in between) I have been doing exactly what he said. "Continue wearing ankle splints 23 hours a day with aggressive stretching of the ankles." Every time I change his diaper I stretch his ankles! (That's every two hours!) I hold his foot with his toes pointing towards his head for 20-30 seconds at a time and repeat 3-4 times per session. Then I hold his foot to the outside as well. But Dr. Narotam decided that Rayden needed to wear the splints a little longer. He says his ankles are more flexible, but not quite where they need to be. He wants him to come back in four weeks to see another orthopaedic doctor for a second opinion. They will decide together whether Rayden will need additional surgery on his feet or not. The only problem now is Rayden's splints are a little too tight.

2-Neurosurgery- We saw Melody Watral, CPNP-PC, Dr. Elton's nurse. Rayden's shunt setting remained the same at 1.5. His incisions are looking better and his fontanel is not bulging or sunken in. Although he looks and acts like a new child, I did have a few concerns. (1) I asked about the BB sized knot under his lower incision. Melody thinks it is a lymph node. (2) Rayden has been aspirating (breathing tiny bits of food, fluid or saliva into the lungs) more than ever when he drinks a bottle. It sounds like he desperately needs to cough! This is a side effect of Chiari II Malformation. I asked if his MRI showed if his Chiari had decreased or not. Melody said she would have to ask Dr. Elton. In the mean time Maya called his Gastroenterologist for advice. She is changing his reflux medicine from Prilosec to Prevacid. Maybe this will help. (3) The left side of Rayden's skull is higher than the right. I was wondering if this is going to cause a problem down the road. Here again, Melody said she would have to ask Dr. Elton. From now on, I'm going to make sure we schedule our Neuro appointments when he is there!!!

Maya always comes to our appointments at the hospital. We love to see her and Rayden is starting to really like her as well. 

3-Occupational Therapy- Courtney made Rayden some new Thermoplastic AFO Splints with a camouflaged strip across the front. So adorable!

4-Physical Therapy- Rayden's therapist is Emily Barefoot. He really seems to like her. The first time she worked with him she had to give him two 'Mommy breaks'. But the second visit he worked the entire time! They are working on head control, tummy time, sitting up, rolling over, eye tracking and hand grasping. They are doing ankle and thumb stretching as well. That's a lot for a 4 mo old! He has made huge progress in only two visits (but Mommy works with him EVERY day so does that count?)