Theo’s Family

Theo and his mom

TheoFrom the moment I found out I was pregnant there were a lot of emotions and uncertainty. When I was 15 weeks pregnant, I moved back home with my parents since Theo was a big surprise! Around 26 weeks, I was sent to a high-risk pregnancy specialist due to Theo’s femurs not growing. The Genetic tests that were run when I was pregnant, all came back normal. High risk said I needed more protein so that’s what I did.

At 35 weeks, I was told I needed to be induced since Theo was measuring around 4lbs, he was already head down and I was dilated to 2cm. Theo’s heart couldn’t handle the Pitocin, so my doctor broke my water. On 08/08/22 at 37W and 6D, Theo was born weighing 6lbs 1oz and was 19 1/4’’ long. Theo was born with a fever and signs of infection which placed him in the NICU a few hours after birth. After finishing a 48-hour antibiotic, I was told Theo was being discharged on day three in the NICU. Theo wasn’t even home 24 hours when he started spitting up blood and blood clots. My mom and I rushed Theo to our local children’s hospital where they admitted him. On day 5 of Theo’s life, the doctors were thinking about sending him home until they saw his liver numbers and decided to keep him one more night. They never found the reason as to why Theo was spitting up blood. Not even an hour later after they told us we were staying another night, Theo went into cardiac arrest. He was immediately taken to the PICU once they got him breathing again- thankfully, Theo came back on his own after CPR for four minutes. I must add that was the longest scariest four minutes of my life. A week later in the PICU, Theo was finally strong enough to go through a lumbar puncture. The results came back positive for Viral Meningitis. My poor baby was so sick it caused him to aspirate his bottle causing cardiac arrest. The PICU doctor told me to give him 2 weeks with his NG tube and then he should be good as new…. if only that was true. 

Theo and his mom

Fast forward to October of 2022, Theo still had his NG placed since he wasn’t the best at taking bottles. One evening he was doing a feed and in the middle of it he started choking and stopped breathing. He was taken to our local children’s hospital via ambulance where he was admitted due to his history and since he was not gaining weight. He stayed a week and during that week he failed a swallow study, and it turned out he was fighting a strain of COVID. The doctors then decided it would be best for him to get a MIC-Key button that ran straight to his small intestine (J feeds). It wasn’t until Theo was around 9 months old that we realized something more is going on other than feeding difficulties. In May of 2023, Theo had his first and so far, only seizure, he also wasn’t sitting up on his own. Once he started physical therapy, he learned rather quickly how to sit up without support. In October of 2023, we were noticing signs of regression. Theo would not make eye contact, didn’t want to sit up on his own, extremely floppy, irritable, didn’t like things that usually he loved, and only wanted me. His Neurologist at the time had no idea what else to do for him since all the genetic testing that was done had come back normal. She referred him to Atlanta where they immediately admitted him at Scottish Rite. His new Neurologist kept saying it’s not life or death yet, but we need to figure it out as soon as possible. They did an advanced MRI, more genetic testing, and a whole bunch of blood work for neuromuscular things. Everything came back normal. They did tell us Theo has hypotonia and that his central nervous system is misfiring. The Genetic team told us whatever genetic disorder he has is super rare or no one has been diagnosed with it before. I always knew Theo was one of a kind but man, this takes it to a whole other level! Thankfully at the end of November, Theo was not showing any more signs of regression, which is good, but we do not know why it happened. Also, in October we found out Theo has severe Central and Obstructive sleep apnea and he needs oxygen while he sleeps. In February of this year, we found out Theo is having vision issues. They are suspecting Theo has CVI- Cortical Visual Impairment, he will not be officially diagnosed with this until August after his eye doctor goes over all the assessments Georgia Pines are in the process of doing.

Currently, Theo is unable to crawl, roll, walk, or stand. His therapists are taking things slow and steady with him so hopefully one day he will get there! He babbles a little bit, his favorite word is mama which makes me so happy. He is currently in occupational therapy, physical therapy, speech therapy, and just started feeding therapy! He isn’t a fan of any of them, but he loves it when his physical therapist takes him to the pool.

TheoTheo currently is still completely dependent on his feeding tube to get the nourishment he requires; he is connected to it 22 hours of the day. We have no clue what the future holds for Theo. I just keep him comfortable and try to give him as much as a “normal” life as I can. Thankfully, my parents have been supportive through everything and are allowing us to live here rent free for the time being.

My sister, Sydney, also lives with my parents, she goes to all appointments with us to be a helping hand and an extra set of ears for all the information being thrown at us. Theo recently got a new aunt, Paisley, my parents adopted her out of foster care on March 20th of this year. He has another aunt, Shelby, who lives in California. She comes home when she can to see him. I added a picture of them since they do so much for us.

Theo

As far as gifts go, there are of course several things that I would love for Theo to do or have like a trip to Disney since he LOVES Mickey Mouse so much but there are definitely more important things that Theo needs. I am having a tough time finding and figuring out what toys Theo can see (Shiny toys, solid bright color toys) and toys he would want to play with. He has a lot of sensory issues especially with things touching his hands. He also loves being outside and going to the aquarium where there is a lot of motion and lights. He ALWAYS needs diapers, Size 4 Pampers. Theo does receive disability but all of it goes towards my car payment and gas. I am a single mom unable to work due to how demanding Theo’s schedule is and his special needs (there are no daycares in our area that will take him because of his feeding tube). His dad is not involved. He has five weekly therapies plus all of his specialists are in Atlanta (minimum of a 2-hour drive one way).

 

 

 

 

 

Gift: Family trip to Disney World (trip booked for beginning of 2025)

Location: Whitfield County

Given: October 2024

We use cookies to make the website work well for you.
By continuing to surf, you agree to that we use cookies. What are cookies?

Make your tax-deductible year-end gift to provide essential adaptive equipment for Georgia families!