Xxtraordinaryy Oakley

07/15/2026

Haven't updated in quite a while. Oakley had another Endoscopy today along with some lab work. His esophagus is looking "normal" thanks to the Dupixent, but still have the symptoms to control, so waiting on the results of the biopsies to hopefully change the dosing to help better manage the EOE symptoms. The labs that were done were from immunology and all of his immunoglobulins have gone down. He was already low on the IgG, but now it was dropped even more. So just waiting to hear next steps on what to do next.
Oakley is saying more words and has his own language it seems lol. I just love hearing him say "mommy".

06/15/2026

https://toddleroftheyear.org/2026/oakley-01ef

Share and vote daily!!!

Will Oakley appear in a national ad campaign, take home $25,000, and lead the Hollywood Christmas Parade? You decide!

02/17/2026

It's the 48th day of the year and that means it's XXYY day!!! This day is also right in the middle of rare disease awareness month. Being a mom to a kiddo that has a rare disease is no walk in the park. I feel like I am constantly advocating for him and explaining to doctors what the risk factors are for him trying to stay ahead of it. Oakley has come so far and I am so blessed to be his momma. He may have so much going on, but he is my XXtraordinaYY little man and I love watching him grow and learn. 💙🧡💙🧡

12/11/2025

Last night was a little scary for us. We had to take Oakley to the ED for what seems like his first seizure. He has had moments of spacing out for several seconds, but nothing like it was last night when he became unresponsive, still, moving eyes, and couldn't talk. With the genetic disorder he is at higher risk of having a seizure disorder. We will be following up with the Neurology clinic and getting scheduled for an EEG and brain MRI. We continue to pray to get answers and treatment as we navigate this new medical concern. 💙🧡

11/28/2025

We hope everyone has had a great Thanksgiving!! This little guy is finally feeling better. With is genetic disorder and lower immune system, he is more at risk for respiratory illnesses. He had croup, which turned into pneumonia, but luckily he was able to enjoy Thanksgiving with family yesterday. We hope everyone has a great Holiday Season!!!

10/24/2025

Oakley has been a busy one. This month we had a visit to Delaware for the eXtraordinarY babies study. It was a busy couple days, but got a little bit of useful information. Oakley has been doing great in school and his teachers just love him. He has been diagnosed with restless leg syndrome, which explains why he has trouble sleeping. We go to Maryland at the end of the month to see another specialist. And the beginning of November Oakley will have another endoscopy to see if the medication is helping his EOE. He is such a smart, loving, little man and I just love watching him learn and grow 💙 🧡

09/18/2025

This guy turned 3 years old yesterday!!! He is saying new words (mostly words that start with B) and loves the color blue. Oakley still loves animals and will act like one all the time. He has been doing well in school and he will be getting evaluated for OT and PT services through his IEP at school and he already gets speech there. In just a couple weeks we will be heading to Delaware for a visit with the eXtraordinarY babies study team.

09/04/2025

Have not updated in while. Oakley started school and goes 4 days a week for 2 hours a day. He is doing great!! Oakley knows his colors and is working on shapes and wanting to count. Oakley is saying more words but is also using his device more. Big thing though, Oakley has gone to the potty!!! Today we had a dentist appointment and he did so well. He is missing his 2 year molars and may get x-rays in 6 month if they still do not appear. This month he turns 3 and at the end of the month we will be making our trip back to Delaware for the EXtraordinarY babies study!!!