Let the Good Times Roll

Hospitals & 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 &
Really….
This is the good stuff

Me

This sums it up pretty well. We are constantly neck deep in all things medicine, but we are also at no lack of wonderful things happening around us. I just can’t be here to give you a medical update without saying first and foremost 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 very 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 thirsty & hungry.

Colorado Children’s Hospital is just simply amazing. From his anesthesiologists, nurses & cafeteria staff, everyone always blows me away. We are constantly in good hands when we have a procedure or doctors 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 oatmeal cookie. He was pumped on it, which significantly helped ease the stress and worry of the ‘falling asleep part’ that he kept asking about.

The medical team let us be in the room with him right up 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 that I say it over and over again, 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 they gave him when he woke up, he had absolutely no recollection. Classic.

Neurologist Debrief

The Neurologist called me that week and told me that nothing from his 2018 to 2022 MRI had changed, which is amazing. 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 a lot of time on the phone. She fielded my dozens of questions and reassured me of the plan we have in place for him moving forward. This currently includes medicine, 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 big heavy hitters I keep hearing about, pending what medicine 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 keeping a close eye on it & 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 is allowed to sleep 6 hours and nothing more. The idea is that he will sleep naturally so they can monitor his brain waves to see what type of “seizure like activity” he has present. The neurologist, and I, think we will get a lot more answers after this procedure & I am crossing all of my fingers and toes that he will sleep and it will be successful. Stay tuned.

Brace & Botox

Prior to the seizure, Elliott had outgrown his current ‘Superman’ brace. We usually get about 10-12 months out of each brace and we are right around the 11 month mark. We had a new brace fitting before he had his seizure & he had picked out Spiderman 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 flexion in his ankle feels very stiff. Because of this, when the new brace came in, it didn’t fit great. 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 in small incremental times throughout the day. From the advice of our physical therapist, brace specialist & Cerebral Palsy Doctor- we do need to do some additional intervention. We have botox scheduled for November 9 & 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 has been beyond overwhelming. From the bottom of both Nathan and I’s hearts, thank you. It has meant more to us than I think you will ever know. We are blessed, we are loved & 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 talk about 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.