Medical Update

Connor has had lots of up and downs lately which we have learned to expect due to his disease. We adapt as quickly as we can to his ever-changing needs. He is the biggest sweetheart, even on his worst days! They increased his spasticity meds and one of his seizure meds which has made him much more lethargic than he was. Pain management continues to be a top priority. Due to the painful spasticity in his legs, we have decided to try Botox injections which I know sounds strange but multiple doctors and therapists said it can really help. The good news is, the injections don’t cause increased fatigue and can be targeted to the problem areas which for Connor is the calves and heal cords. It usually takes a couple weeks to see any improvement from the Botox and he would get the shots about once every four months. His first appointment for Botox is right before Thanksgiving and we are excited to see if it helps him! Overall, he has been sleeping well through the night but every once in a while, he wants to be a 2:00am party animal. 🙂

He has had some seizures and some “episodes” that we and his neurologist cannot identify. They don’t look like any kind of typical seizure but we are going to do another EEG in the near future to rule out seizure activity. If he continues to have seizures, he may have to switch to the keto diet formula and we may have to add to or change his meds. We know some family members and friends are curious as to whether or not CBD oil could be a treatment option for Connor. The short answer is, YES. In fact, Epidiolex has been FDA approved and will be available legally in Idaho with a doctor’s prescription. You can read more about it here: https://idahonews.com/news/local/legal-version-cbd-oil-epidiolex-approved-by-dea-to-be-offered-in-idaho

That being said, he would have to be weaned completely off of one of his seizure meds and reduce the dose on the other in order to use Epidiolex. That in itself could cause him to have more seizures so it would be like a balancing act with the meds. Regardless, we are happy to know that it’s an option that was not available to him before.

We recently switched his food from a chicken formula to an organic plant-based blended food and he is doing much better with it. He has less acid reflux issues and seems more content overall with the new food.

This morning a nurse visited our home to do an assessment to see if Connor would qualify for some Private Care Services. It went better than expected and she said on the low end, we are looking at about 15 hrs. of help per week. This would not be a nurse but more like an assistant to me in helping Connor with daily living tasks such as bathing, diaper changing, stretching, physical therapy exercises, transfers, etc. They would even be allowed to go with us to doctor’s appointments! It takes a while to get these services going but we are looking forward to the help!

Thank you for your continued prayers and positive thoughts!

Love,

The Perran Family

Joy

Connor visiting Wrangler, his special friend and favorite miniature horse at The Mini Joys ranch in Boise. Connor has always been an animal lover and spending time with animals is still one of his favorite things to do. He gets so excited as you can see in the photo! 🙂 We heard about this amazing place through a friend and were invited out to meet all of the miniature horses. Mini Joys is a local non-profit whose mission is to spread joy, hope, and healing with the help of the mini horses. The Minis are gentle and loving and they provide a form of therapy for children with special needs, at risk youth, and seniors. Sometimes, they travel to events or to the Children’s Hospital. It is run by one very special person who our family is so blessed to know, a small board and many kindhearted volunteers. They make a difference in the lives of others and that is a beautiful thing! If you would like to read more about Mini Joys, please visit https://www.minijoys.org/

“I Love You”

This video was taken on Feb. 28, 2018, just a few weeks after we returned from Connor’s Make-A-Wish trip. “I love you”, are three beautiful words that most of us take for granted in our daily lives. Connor said this to me so many times over the years and not out of habit, but with heartfelt kindness every single time. I used to think, “Wow, he says he loves me all the time. I’m so blessed”. Little did I know at the time that all these “I love you”s would have to last a lifetime. “I love you” turned into “I love” and then just “I”. I will always cherish this little video (even though it’s poor quality). As much as I miss him saying those words, I know how much he loves me. Love is so much more than three words. Don’t be too busy to say “I love you” today and mean it but more importantly, take the time to make others feel loved. That’s what really matters.

I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. – Maya Angelou

The Gift of Music

 

This morning our family was given the gift of music by Nicole Christensen at our home through Corwyn’s Cause. She sang several of Connor’s favorite songs including “Somewhere Over the Rainbow”, “I Can Only Imagine”, “A Million Dreams”, and “Silent Night”. Since Connor is blind, music has become the most important part of his world. It’s the one thing he can always enjoy, no matter how he’s feeling. Thank you Nicole for bringing kindness and joy to Connor and our family with your beautiful voice. Thank you Megan and Corwyn’s Cause for shining light on all of us and making such special things like this possible! We are so blessed and grateful for everything you do for our family!

Corwyn’s Cause is an amazing, local non-profit that provides uplifting support to families like ours, with medically fragile or terminally ill children. They will be hosting their 2nd gala tomorrow night to raise money for their cause. Here is a news article about Corwyn’s Cause that contains a link to their Facebook page:

https://www.ktvb.com/article/news/local/corwyns-cause-shining-light-when-skies-are-gray/427669936

 

Warrior

Connor had an amazing day at PT yesterday! It’s by far the best day he’s had there in a few months. A lot of times, he’s sleepy at PT but he was wide awake and ready to work hard. While his therapist was supporting him standing in a knee-bent position with his new AFOs, he stood all the way up over and over again. He was so proud of himself! Then, he got so excited that he started jumping in her arms and making happy sounds! Connor is such an inspiration to everyone who is around him. No matter how frustrated he gets, and that has been happening a lot more often lately, he never gives up! Connor is a warrior!!!