Wonder: Unbalanced Location

Wonder: Unbalanced Location

While AJ was inpatient at Lurie Children's Hospital for seizure management, I took total advantage. On one hand, I wanted to be there for and with him, but on the other hand, I seen this as an opportunity to do, well, just about anything I wanted. I kept thinking, wow 8 hours to myself while the kids are in school, this is amazing. I didn't know whether to disappear from obligations completely or make up for lost time. The fact I had time to even ponder in my own thoughts was thrilling and exciting.

AJ was inpatient a total of 5 days, 5 hours, and 42 minutes. Don't ask me how I know this, I just know. Within that time, I made sure to get a good night's sleep, stretch out my workouts, prepare dinner every night, schedule myself a doctor's appointment, have family over, and plan a day trip. We adjusted quickly since this wasn't AJ's first spontaneous hospital admission . Plus, this admission felt manageable compared to the rest.

Even though I talked about spending time alone or with my family, I still went out to be with AJ three times. While the drive drained me, it honestly didn't matter, because when I got home, I napped. I had time to do that. Sleep deprivation was certainly conquered in those 5 days. And if I felt I was anxious or started to overthink, I took it out at the gym. It wasn't so much about seeing the scale drop as it was about letting out steam and trying to distract myself. The freedom I had to get up and go, was just a plus.

So was the day trip we took to the Shed Aquarium! The Shed was probably the highlight of the 5 days!  I'll never forget, my husband turned to me and said, "Thank you for pushing me to do something different. I had so much fun today." Something about that comment just made me feel appreciated. We had such a good time and all agreed that 4D Shark show was our favorite thing to see while there! After leaving the Shed, we picked up AJ from Lurie's and took the train back home. We played iSpy with the kids and then somehow, all ended up sleep. Julius and I joke about how insane we are for falling asleep on the train with all the kids. Haha! The babies were fine, he wakes up at the sound of a pen drop. Me on the other hand, uh uh. I can sleep through anything!

AJ's Health Updates

While AJ was at Lurie's I was able to meet with the ENT and Genetic Specialist. Both were amazing at what they do, and I was enlightened with some new information. The Ear, Nose, and Throat team diagnosed AJ with Laryngomalacia. Symptoms associated are cough, mucus, regurgitation, and baby acid reflex. It's described as soft tissue of the larynx that fall over the airway causing it to flop. The terminology is new, but it is associated with Strider cry, something AJ had at birth. Not a major concern at this time, but as AJ ages he will need a surgery if it worsens.

The Genetic Specialist also brought up what they believe to be the correct term for AJ's diagnosis. His case at UIC was presented to me as Partial Trisomy 18 ,but they describe it as 'Unbalanced Translocation of Chromosomes 4 &18'. Still very rare, but because the two diagnoses are similar, they gather information about one to learn more about the other. For AJ, he has some facial abnormalities, epilepsy, a heart condition, developmental delays, impaired vision and hearing, minor clubbed feet, and a corrected mandibular jaw; which is associated with Trisomy 18. Whereas Trisomy 4 is associated with similar symptoms, but their life expectancy is longer. Since AJ has Partial, certain things may not present themselves right away, if at all. So, the best terminology to describe AJ's condition would be 'Unbalanced Translocation of 4 &18'. Not sure why, but it was reassuring to hear. It just confirms that I am on the right path of allowing AJ to define his own past, present, and future. As of now, AJ is back to his normal feeds, sleeping better at night, and engaging during the day. He has since gained 4 lbs. and I have started giving him my frozen breast milk, while I try to build up my milk supply again.

In 5 days, I rekindled my relationship with myself, my love for adventure and spontaneity, joy within my kids and marriage, laughter, the importance of time, and the remembrance of curiosity and wonder as a child. This was the spark I need to feel refreshed and whole again. I am now able to explore, create, and write with the intentions I once had. Hope, optimism, and consistency.