February 14, 2019 "SB Clinic (6 appointments)"

Rayden sees 6 different specialists during these SB Clinic appointments (PT, OT, Orthopaedics, Neurosurgery, Urology, and Dr. Alexander). Most of Rayden's appointments went great today. There were just a few concerns (below). 

Dr. Alexander says Rayden seems to be right on target with his developmental milestones. He weighs 35lbs. 7.9oz without his AFOs (41st percentile) and he is 3'6" tall (79th percentile). His blood pressure was 116/51 and his BMI is in the 7th percentile, which is exactly where Dr. Alexander wants him to be. In other words PERFECT!! He did make two suggestions. 1-When he is 5/6 years old, we may send him for neuropsychology testing to see how he best learns. 2-His chest shows signs of pectus excavatum but we will continue to monitor this over the next several years as these do not typically require interventions until 10-15 years of age.

Melody from neurosurgery says Rayden is doing fantastic but they plan on doing a sedated MRI without contrast of his brain and total spine to assess for syringomyelia and a shunt series X-ray in February.

Dr. Ross, Urologist, says Rayden's latest renal ultrasound looked great although there was some bladdar wall thickening. Apparently that is typical and normal for people with SB but not cause for alarm right now. She wants us to get Rayden a daily multi-vitamin with iron because his blood work showed his iron was low. She is also concerned that the Peristeen enema isn't cleaning him out as good as before the surgery. (His last x-ray on Feb. 1 showed a "moderate colon burden") She wants us to try miralax daily, maybe after school to prevent any accidents during school. It's one of those 'play around with the dosage until you get it right' kind of things.

Everyone's main concern seemed to be his toe. I honestly have no idea how this happened, but I believe he scraped the tips of his toes on the steps of the pool during aquatic therapy. Apparently sores on SB patients can become very serious very quickly, especially because Rayden doesn't have the best blood circulation down to his feet. If it continues to get more red over the next two days then he will need an oral antibiotic. Of course, no pool or bathing for a while either.