It’s been a while since I have updated you all on what is going on with Warrior Kid so I figured one BIG update was due ! As you recall Warrior Kid hasn’t grown in over 18 months. We think it is due to the steroids he was receiving every 3-4 weeks for his high dose monthly IVIG infusions. Since we have moved to SCIG (sub Q) weekly lower dose infusions he doesn’t have side effects and therefore steroids aren’t needed to combat side effects since he doesn’t have any! Super great for sure however because he had so many doses of steroids for 18 months, he stopped growing, or at least we think he stopped growing because of that.
Last month we had to put WK to sleep so that he could have an MRI of his pituitary gland. His Endocrinologist wanted to rule out a tumor on his pituitary gland which could have been a contributing factor in him not growing. Thank GOD his scan was clean! It literally was one of the worst 3 moments in my life having to see my son get gassed masked to sleep. Like usual, WK was super cheery, making friends in the waiting room and eager for me to buy him something on iTunes “if he did a good job at Children’s Hospital.”
We have our follow up with his Doctor on June 13th and are hopeful he will now be considered a candidate for growth hormone shots so that we can get this guy growing! He saw his Immunologist last week and according to their measurements he grew a 1/2″. I am not going to lie…I bursted out crying. The true measurement will come from CHOC however if he actually did grow a 1/2″ on his own that is fantastic news! That means that growth hormone + him growing himself will hopefully get this guy on the right track because he is only 4 foot 6 1/2″ and he will be 12 years old in July:(
Warrior Kid also was recently diagnosed with Auditory Processing Disorder. I’ll spare you all the details however if you are interested in reading up about it you can do so here: Auditory Processing Disorder. His Speech Therapist and Occupational Therapist really pushed me to have this evaluation done and although I was reluctant at first, I am glad that I did. His left ear overpowers his right ear by 80% so the goal is to try and get the ears to be a bit more balanced so that he will hopefully be able to process what is being said to him in a much better way.
April was Autism Awareness Month in case you didn’t know. We couldn’t change the lights outside our front door so we opted to change the lights in WK’s playroom. He was pretty stoked every night seeing the blue lights…so much so that he wanted to keep them permanently. Love you Son but ummm NO!
Also in April I was Co-Chair of a huge Fundraiser for Warrior Kid’s Special Ed Non Profit School. We love LOVE LOVE his school so much. They have been life changing for him/us and I wanted to do something to help give back. It was a very successful event fundraising wise however most importantly everyone had a great time! There was even a special guest performance by our very own Warrior Kid! This was the first time he ever played the keyboard and sang at the same time which was a huge accomplishment on his part! The guy in the yellow shirt is his Music Teacher, Christian Hernandez. Hope you enjoy the video clip…oh and get your kleenex now. I warned you!
We also ended a successful basketball season are now more than half way through baseball. As a reminder we are part of a Special Education Sports League called The Spirit League. WK has been playing sports in this league since he was 6 years old. It is the ONLY way for a kid like WK to be able to play team sports. We have small teams, all the kids are special ed and there is a significant coach to kid ratio. I have been an Assistant Coach the entire 6 years and it has been an amazing experience. Here is a picture on the last day of basketball of Warrior Kid and some of his good pals from his basketball team:)
I have been also working hard to get the Warrior Kid to be more independent with showering and doing chores. Chores currently only consist of getting the mail and putting his dirty clothes in the hamper. With that said, this Summer I have three goals I have set for myself to accomplish:
Summer is approaching which means it is almost time for Surfers Healing and we cannot wait! WK got to go out surfing with one of his two favorite surf coaches a few weeks ago and he was super stoked! This is literally my favorite part of the year because we get to see all of our surf camp families and I get to see pure joy on my sons face for multiple days in a row!!
And last but NOT least…..for those that are new to my blog or just unaware of what I have been working on the past 2 years of my life, I am the Executive Producer and Creator of Warrior Kidz. Warrior Kidz is an animated TV series comprised of twenty-six 11-minute episodes, about a group of ordinary kids in extraordinary circumstances. Our fun and exciting stories star seven best friends who become superheroes. The title, Warrior Kidz, is an offshoot of a name long used to describe a movement of parents who fight the stigma of Autism for their children. Just like them, we hope to enlighten viewers about this and other disabilities, from a child’s point of view.
I have been spending a ton of time in Los Angeles trying to pitch the show so that we can get on a screen and hopefully make a lot of kids smile. It’s time to see ALL types of kids on TV and I won’t stop until that happens!
As always, I appreciate your support of my blog so much. It truly makes the journey with Warrior Kid much easier knowing that I have people like you who care.
Until next time!
ps-Please feel free to use the Chat feature on my blog so that you can post a topic important to you, and get advice/feedback from others!