Xxtraordinaryy Oakley

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.

03/04/2025

https://na01.safelinks.protection.outlook.com/?url=http%3A%2F%2Furl2448.networkforgood.com%2Fls%2Fclick%3Fupn%3Du001.SOJ7CkGzIKltnad-2FvgUlBYVJVWW9q607l67lZIq6VyGGHdjTDMa-2F0V1UEQrhBsNFXr6U-2FZ2dW3tdgcKfLYPHsoAjNzEHQaO1QliRnMZnAGqJIts0oySl1oWDWUlkAMoZLHPD_-2FWUgBUrUgs4F8nzuts1uhM3M1YL2QtYDBY8zdZiru5NwYC3WRr2m6a4C7pgBKX-2B7rRSzNeo2Uogr3HyCUvn6yldpX0OqaDWMm2Xop7F0LAWE5eAvG1nRxqbQh3vSfkPhn0IvtncX4ZZyjBvDy1CedZJkcKuDhFMSrNv9hzGgAxoKDKyOat4CGkurRhaKzUbSvdyTdgohjwoPQU8ysE-2BPjg-3D-3D&data=05%7C02%7C%7Cee5e723e1176487bc5b408dd5b674e4b%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C638767221426967509%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=tPu9Jwgh49AopE3I1nou%2B5efa4L%2FWy5roIiBCofXSDM%3D&reserved=0

With your support my registration and hotel fees will be free. When I was pregnant with Oakley, we found out there was a possibility of him being born with Klinefelter syndrome. We opted to wait until birth to do more genetic testing. When he was born his cord blood was tested and came back with 48X...

02/27/2025

Oakley has been busy. Yesterday he had an allergy skin test and had several positive reactions. Today he had a dentist appointment and did amazing and also an IEP meeting. This kiddo will be going to school 3 days a week an hour a day. I know there are still many unanswered questions, but we are taking things day by day and I can't help but be amazed by my little guy.

02/17/2025

Happy XXYY day to my XXtraordinaYY Oakley!!! I am so amazed at how far he has come and I can't wait to see what is to come (the good and the bad). I know there are many things that I still do not know about this disorder and many questions about Oakley's health/ development still to be answered, but this momma will continue to advocate for him. God made Oakley just the way he is supposed to be and I am so blessed that I was chosen to be his mom. 💙

01/31/2025

Oakley was fitted for afo braces today. He saw the orthopedic due to his leg/feet pain and they feel he may need more support than the smo toe walker braces. They also think he could have Raynauds syndrome because his hands really bother him when he is cold. His fingers will turn really red and palms white. We are still waiting on the rest of his test results that the allergist ordered and will follow up with them next week.

01/20/2025

Just a little something this eXtraordinarY little guy has learned to do with his AAC device. 🤩🥰