June 19, 2023 "Seizure #12"

8pm, Our long day was over, and our evening routine was well under way. Rayden was on the couch preparing to get in the shower when, all of a sudden, he wailed in pain. I looked over to find his hands on top of his head as he wailed again. I asked if he was alright, but he didn't answer. I immediately jumped up and ran to his side. I quickly realized he was having a seizure when I saw the glaze in his eyes. He stiffened up, closed his eyes, and began choking on his saliva. I grabbed my phone to start a timer and moved the sofa pillow so I could lay him on his side. I called Alex on his cell phone because he and Michael were in the garage. When he answered, I gave one remark, "Rayden, NOW!" They were by my side in one second. Michael got the emergency medication, while Alex began to monitor Rayden's breathing. I continued to watch the timer and reassure Rayden that he was alright. He never stopped breathing this time, although it was very shallow with long pauses in between. Around the 3 min mark, his eyes began to blink and open a tiny bit. He was shaking his head to my questions and looking at the person I asked him to find. He wanted to go to sleep but I needed to know he was alright first. We asked him to count to 5 and tell us his entire name. He was able to do that so I allowed him to go to sleep on the couch while I sat right beside him for the next two hours.  

June 21- Dr. Carolyn Zook-Lewis, Pediatric Neurologist 

Studies suggest that medicines fail to control epilepsy in approximately 20-25% of children. When a person has failed to stay seizure free with two anti-seizure medications they call this drug-resistant epilepsy. It is then important to be seen by an epileptologist to evaluate why, and if there are better treatment options. Rayden has already maxed out one medication and is now having break through seizures on the second. Dr. Zook-Lewis referred him to an epileptologist to review his case. 

June 13 and 15, 2023 "Orthopaedic and ENT Surgical consults"

 June 13-Dr. Anna Vergun, Pediatric Orthopaedic Surgeon

Right Leg- Rayden has external tibial torsion in his right leg. He also has some forwarding residual club foot countering the external twist, causing the fibula bone to stick out of the back. The bone is very prominent making a curved look in the back of his ankle. At this time, we are not doing anything to correct this. 

Left Leg- His left leg has NO external rotation so it's hard to make the joint move and stay forward. This is why his left leg rotates inward when he walks. We are currently treating this with a twister cable attached from his left AFO to a hip belt. 

-The surgeon recommended working on flexibility and stretching external rotation of his hips on the left side. She recommended corrective surgery when he is almost finished growing to prevent stunting the growth plates, around 13 years old. 

June 15- Dr. Austin S. Rose, Pediatric ENT

Rayden was diagnosed with strep throat 4 times in the past 4 months so Dr. Mary Ann Chiodo, Pediatrician, referred him to the ENT for possible tonsil removal. Taking into consideration that there has been an unusually high volume of strep this season, as well as Rayden's significant surgical history and recent seizure episodes, the surgeon recommended watchful waiting for additional strep over the next 1-2 months. Should episodes persist, he recommended performing a tonsillectomy and adenoidectomy in the near future. We found it admirable that he didn't want to put Rayden through another surgery when he had every excuse to do so. 

June 7, 2023 "First Grade Awards"

First Grade was a BLAST!

Rayden made lots of friends this year but his favorite ones to play with were Skye, Makenley, Amy, Rebecca, and Arthur. They included him and didn't treat him any different. He loved PE, Art and Music. His teacher, Mrs. Sarah Gutierrez, was very loving and caring. He worked very hard to earn two desk pets (🐷 and 🐸) with food (🍓 and 🟠). Every morning he would wake them from their sleep inside his desk to sit on top for the day while he was there. He was serious about taking care of them. 💙 He completed all his homework and recorded over 150 books in his reading log! At the Awards Assembly Rayden received a medal for the 100 Book Club, and a certificate for Student of the Month for Courage. We are so proud of his hard work and determination.