May 27, 2022 "Kindergarten Graduation"

We are so proud of Rayden for his hard work this year. He has made a ton of academic growth and has fallen in love with his teacher, Mrs. April Dudley. It was so nice to have an almost normal school year. 

"Let Them Be Little" by Billy Dean, was playing as the children walked into the gym for their Kindergarten Graduation. Tears filled every mother's eyes, especially mine. I was beaming with pride as Rayden sang every single word to "The Pledge of Allegiance" in song form. He sang a few words of the other songs as well, but it was evident which song was his favorite. Nanny and Granny joined me in amazement at how respectful, quiet, and attentive he was during the entire program. After taking a few pictures, Rayden was treated to lunch at Bojangles and some play time with both of his grandmothers.  💙

May 23, 2022 "5th seizure"

Rayden has been sleeping in our bed for the past two months because we were too scared for him to be alone. Even though he is still little, he takes up a lot of room because he likes to sleep sideways in the bed! Needless to say, Michael and I haven't been sleeping very well. 

We received the Embrace seizure detecting watch May 9. Knowing the watch would contact us if he was having a seizure gave us a sense of relief and we moved him back into his own bed. For the next two weeks the watch gave false alarms during the day when his heart rate elevated, he became sweaty, or had repetitive movements. This only made us feel more at ease when he went to bed because these things certainly shouldn't be happening while he is sleeping. 

The house was dark and quiet at 1:22am, May 23rd. I was awakened by my cell phone ringing on the night stand. With one glance I noticed the caller ID said Seizure. I jumped up out of the bed yelling, "seizure". Michael jumped up as well, but was a little slower because he had a foot injury. I took off running to Rayden's room on the other side of the house. After flipping on the light, I saw Rayden having an active seizure. His head and arms were bobbing back and forth, and his eyes were fixed and dilated. I called his name, but he did not respond. I ran back to the kitchen to get his emergency medicine. Michael was on the way, but still a little slower than me. As I ran back down the hall, I believe I actually left the ground. Then all of a sudden I fell flat on my face HARD! Alex stepped out of his room and Michael yelled my name. I didn't bat an eye. I just jumped right back up and went to Rayden's aid. Luckily the seizure stopped within two minutes, before we had to administer the emergency medication and call the paramedics. After I gave Rayden a little kiss, I noticed blood on his cheek. I had busted my lip and knee, and bruised my chest very badly. Oh well, anything for my boys. 

How would we have known that Rayden was having this seizure without the Embrace watch? I don't want to think about what could have happened. I am so thankful for the watch and the emergency medication. I tell everyone about it in hopes that it will help another family. 

May 5, 2022 "Twister cables again!"

  

Rayden saw Dr. Vergun, Pediatric Orthopaedic Surgeon, on March 15th regarding is left foot turning in so badly while he walks. She stated both hips are well located with a normal arc but show decreasing coverage over the femoral head. The right side measures normally at 20 degrees but the left measures about 35 to 40 degrees. This femoral anteversion (abnormal forward rotation) on the left is likely due to growth and will probably continue to get worse. She recommended waiting until he's about 14 years old to do corrective surgery. In the mean time, Rayden will use twister cables to help keep his legs in line to prevent tripping over his own feet while walking. 

Rayden received a left twister cable on May 5. The cable is different than the ones he had in the past. It is attached to his shoe instead of his AFO's. His old cables had a hinge at the knee, whereas this one has one continuous cable. I think we will have the same 'love/hate' relationship with this cable as well. I love that it helps Rayden walk better, but I hate the complexity of changing him and how it rubs on his back.