Xxtraordinaryy Oakley

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!!!

07/21/2025

https://toddleroftheyear.org/2025/oakley-8451

Oakley Has A Genetic Disorder Called 48XXYY Syndrome. He's Such A Happy Guy Despite All His Testing, Procedures, Surgeries, And Appointments

05/30/2025

At the beginning of this month Oakley had a spinal MRI. The MRI showed that he has a fatty filum terminale in between two of his lumbar. Oakley will be followed by neurosurgery towards the end of next month to monitor for tethered cord. Oakley is also scheduled for another endoscopy in the middle of June to see how the steroid treatment is going for the EOE. The summer will have a few specialists visits and therapies. Oakley also finished out his first few months of school!!!

04/18/2025

It has been a little while. Last month Oakley was diagnosed with mast cell activation and a couple new medications were added to help. This week Oakley had an endoscopy to see if the omeprazole was working. I received the results from the biopsies that were taken. Oakley has now been officially diagnosed with EOE and will start a steroid to help with the inflammation and swelling in his esophagus. He will also be going to a specific clinic for this management. Oakley will be scheduled for another endoscopy in 8 weeks to see if this treatment is working.

03/18/2025

We found out some new things going on with Oakley. He will be starting some new medications as well has having an epi pen and start immunotherapy at some point. You would never know by looking at this sweet boy that he has so much going on. And to hear the doctor tell me I am doing a good job and a super mom helps me to feel like I am doing okay.

03/14/2025

Oakley had his IEP meeting a couple weeks ago and has started school!! He goes to school 3 days a week for an hour. We will transition to more in the fall. The first week was rough, not just for him but me too. This past week though he went in like a champ and there were no tears. He is loving playing with the animals and outside. I've been told that he is such a little celebrity and very precious and smart. I can't wait to see him grow and develop in school.