Let the Good Times Roll
“Hospital and Doctors
Therapists oh my
Phone calls and questions
The reasons wondering WHY
Life has its ups and downs
Sometimes it all feels so tough
Then there are the simple days
And really
This is the good stuff”
This sums it up pretty well. We are constantly neck-deep in all things medicine, but we are also not short of wonderful things happening around us. I just can't be here to give you a medical update without first saying that we are GOOD. We have a fun, beautiful, busy life, and we are happy. Elliott is happy.
MRI
On October 3, Elliott had his MRI. This required very limited food and drink for the day because he had to go under full anesthesia. The lead-up was the worst part. Lucky for me, he is very logical, so once I told him the detailed rundown of what food and drinks he could have throughout the day, he gave me a lot more grace than expected when he got hungry and thirsty.
Colorado Children's Hospital is simply amazing. From his anesthesiologists, nurses & cafeteria staff, everyone always blows me away. We are always in good hands when we have a procedure or a doctor's appointment at this hospital.
For the MRI, Elliott got to pick his flavor of anesthesia. They put this flavor on a mask they held over his mouth and nose that would put him to sleep before they gave him his IV. He picked an oatmeal cookie. He was pumped on it, which significantly eased the stress and worry of the 'falling asleep part' he kept asking about.
The medical team let us stay in the room with him until he fell asleep. I cried big, fat elephant tears once Elliott was asleep. It wasn't because I was worried for him, it was because I was so very impressed by him. I know I say it over and over, but I will never stop. He is so damn brave.
As a four-year-old, he looks at the big, often scary, world around him and says, "I can do this, I will be brave." Those were his words, not mine.
He was nervous, and yet he was so strong right up until his sweet eyes fell hard and fast asleep. I deeply believe in my soul that he is going to move more mountains than he already has.
The MRI went great. He came out of anesthesia absolutely hilarious. He made everyone around him laugh, and days later, when I asked him about his hospital popsicle, which they gave him when he woke up, he had absolutely no recollection. Classic.
Neurologist Debrief
The Neurologist called me that week and reported that nothing in his MRI scans from 2018 to 2022 had changed, which is remarkable. The seizure had no worse or negative impact on his brain. This is not necessarily surprising according to her, but very VERY reassuring for me.
We spent considerable time on the phone. She addressed my numerous questions and reassured me of the plan we have in place for him moving forward. This currently includes medicine, an EEG & a follow-up appointment with her in December.
The bottom line is this: due to Elliott's medical history, previous brain damage & now a seizure, he has been diagnosed with Epilepsy.
Epilepsy is a different diagnosis from Cerebral Palsy in the sense that it doesn't necessarily mean that it is with him for life. It can go away. However, I am holding those words very loosely because it takes years without medicine and decades without seizures to basically take this diagnosis off your medical resume.
If I am being fully honest, I am not sure how much I have processed this diagnosis. I have told my therapist that she will never be without a job counseling me, and this statement is proving to be true. This is a hard pill for me to swallow on top of all the other medical diagnoses we are already navigating.
Medicine
The anti-seizure medicine he was prescribed the day of the seizure has been working. Thank God. The side effects are mostly "minimal," but it does include a fair amount of itchiness. This is a new road I am navigating because I don't know what battles to pick when it comes to a brain medicine's side effects. Itchiness & major mood swings seem to be the major issues I keep hearing about, depending on the medication you are on. Personally, I would pick itchiness over the latter, as long as it is not debilitating to him, which it hasn't been. We are monitoring it closely and continue to take it one day at a time. For now, Trileptol is our saving grace & peace of mind.
EEG
We have an EEG scheduled for November 21. This will be another big hurdle because instead of starving Elliott, I have to sleep-deprive him. The night before this procedure, he may sleep for no more than six hours. The idea is that he will sleep naturally, allowing them to monitor his brain waves to determine the type of "seizure-like activity" present. The neurologist and I think we will get many more answers after this procedure & I am crossing all my fingers and toes that he will sleep and that it will be successful. Stay tuned.
Brace & Botox
Prior to the seizure, Elliott had outgrown his current 'Superman' brace. We typically get about 10-12 months from each brace, and we are at approximately the 11-month mark. We had a new brace fitting before his seizure, and he had chosen Spider-Man this time.
After his seizure, there was a noticeable difference in a higher level of spasticity in his CP (right) leg. This means that it was VERY tight. He doesn't walk with his heel down, and when you stretch him, the ankle flexion is markedly stiff. Because of this, when the new brace arrived, it didn't fit well. It was causing red spots, rubbing against his ankle & most importantly, it was uncomfortable for him.
We have made some adjustments to the brace & are only wearing it for short periods throughout the day. Based on the advice of our physical therapist, brace specialist & Cerebral Palsy Doctor, we need to implement additional interventions. We have Botox scheduled for November 9 and possibly casting after that, depending on how much of an improvement Botox makes. Only time will tell.
THANK YOU
My last thought for this long post is that the support and love from our community have been beyond overwhelming. From the bottom of both Nathan and my hearts, thank you. It has meant more to us than I think you will ever know. We are blessed, we are loved, and we are so very, very grateful.
Stay tuned as this rollercoaster continues to unfold. If you ever have any questions, please never hesitate to reach out. I am happy to discuss it and answer.
For now, we are prepping for Halloween & let me tell you, we have a pretty good family costume in store... ;)
Let the good times roll, baby.
