Hello, my name is Theodore! My family and friends call me Theo. I was born December 2, 2015 at 3:17pm and weighted 6 lbs 11 oz. I’ve brought so much love and joy to my parents, extended family, friends and everyone I have met. I’m a beacon of God’s amazing love. My journey has been difficult though. I have faced several challenges throughout my first five months of life and continue to meet new obstacles. My journey started upon my birth when my umbilical cord was wrapped around my neck three times and my hands and feet were turned at odd angles. Mommy and daddy grew concerned and worried. They were reassured by doctors that all would be ok and that my hands and feet would self correct in form within a few days. They were told that it was caused from my positioning in utero. Little did mommy and daddy know, it was not caused by my positioning. To learn more about what was going on with my little body tests were scheduled and performed. These tests disclosed that I had abnormal reflexes in my hands and feet, low muscle tone or hypotonia, a broad ridge nose, a mild cleft lip and an extremely high palate that made it hard for me to eat. In addition to this, one of my kidneys was enlarged and my heart had 2 holes in it. It was at this moment that time stood still.
By the time I turned 2 months old, I had a speech therapist that would help me learn to eat and swallow. I was also fitted for little booties that would help correct the positioning of my feet. By three months old, the cardiologist made a wonderful discovery. The larger of the two holes in my heart had closed. The other had grown much smaller and would continue to close on its own. I could see how happy this made mommy and daddy. Life was becoming manageable. I was attending daycare and enjoying time spent with my family. Mommy and daddy would sacrifice their lunch hours to come see me for feeding time because my daycare knew it was difficult for me to eat. We made it all work and accepted it as our new normal.
As time passed though, I was missing more and more developmental milestones such as holding my head up, smiling, rolling over and holding onto objects. Amongst this, another issue arose, hypertonia. Hypertonia is the opposite of hypotonia that I had earlier. My body now goes from a relaxed and limp posture to a rigid and contracted posture that is very painful. Doctors are searching for what causes this and how to help me manage the pain. Genetic testing was one of the best ways to receive more concrete answers. The first round of genetic testing came back all normal. They indicated that I did not have any deletions or mutations of my chromosomes. Although this was good news, no information was gained. The next step was to undergo Exome Sequencing on May 5th. Results for this test could take 12-16 weeks to obtain.
While waiting for these results on May 7th, I began choking and having trouble breathing during one of my feedings. Mommy called the doctor and was reassured that everything was alright as long as I was breathing and not turning blue. We planned to visit the doctor after the weekend was over to follow up. Sunday, I helped mommy celebrate her first Mother’s Day. That night at bedtime, about 30 minutes into my slumber, I began choking again and coughing uncontrollably. It was much different his time. No one could soothe me or calm me down. Mommy and daddy rushed me to the emergency room where a chest x-ray confirmed that I had aspirated milk during my last feeding and had fluid in my lungs. Luckily it was not yet pneumonia, but left untreated could develop into it.
Since the hospital I was in did not have a designated pediatric ward, I was transferred by ambulance to Novant Presbyterian near Uptown Charlotte. They could take better care of me there. Upon my arrival, I saw several specialists and had many more tests to determine what was happening when I ate. Doctors concluded that I was unable to have formula of any thickness because I would aspirate the fluid every time, making it impossible to eat. To temporarily mend this issue, a feeding tube was inserted into my nose. It would supply my tummy with the nutrition it needed while the doctors created a more long term plan. On May 12th a G tube was surgically placed to feed me for the foreseeable future.
My surgery went well and I was placed in the pediatric ICU due to undergoing general anesthesia and my breathing tube. All of my body hurt after this procedure. I would wake every 20-30 minutes screaming in pain. Each day and night that passed I became stronger and stronger. I was released from the ICU on May 16th and put back on the general pediatric floor. This was short lived because I was not recovering fast enough. I was quickly transferred back into the ICU and given the medications I needed and closely monitored. The next morning I returned to the general pediatric floor.
Now that I was able to eat, retain nutrition and show signs of recovery, it was time to focus on the “episodes” I was starting to have. I always had fussy moments where I would arch my back and fight. My episodes would last 10-15 minutes. These episodes were now becoming longer and lasting up to a full hour. Neurologists call this dystonia. When I have these episodes my body hurts and I have no control over what I do. I seem to go from having extreme muscle contractions to completely limp. Each episode is so extreme that I fall asleep immediately following. The neurologist ordered an EEG of my brain to check for seizure activity. Results did not show definite seizure activity but showed that I could be prone to seizures in the future. Based on these results my doctors gave me medication that would calm me down and hopefully help me control these fits.
My world now revolves around waiting for the results of the genetic testing. It’s the only way to move forward. In the meantime, the doctors will experiment with medications to try and treat the symptoms I’ve been having. I will remain in the ICU for around the clock monitoring for the foreseeable future.
I’m not sure how much time I will be spending here, but I need your help. My medical bills continue to add up. Mommy and daddy continue to make trips between the hospital and home racking up gas and parking fees. Once cleared to leave the hospital, I will no longer be able to attend daycare. I will require around the clock care by a nurse at home. The supplies that will be used to clean my feeding tube will also add to my medical bills.
Please keep me in your prayers as my medical team and family search for answers to give me the best life possible. If you can, please donate what you are able to. It will go towards all of my medical care, tests and hospital stays. If you are unable to give, please help get the word out and share my story. Thank you for taking the time to read my story and help me!