THE AFO

I got my first pair of AFO’s, ankle-foot orthosis (a few months ago). My physical therapist at Children’s Hospital of Alabama casted my legs and feet to get a mold measurement for my custom shoes. We could choose a one color print, or a design print with cartoons, superheros, or a sports team. We went with the Spiderman print; blue insoles and straps!

I don’t like wearing them. The goal is 30 minutes everyday; 🤪 that doesn’t always happen.

LOST TOOTH

My brother [Jeremiah] saw blood on my hands, jaw, and chair. I was chewing on my finger at the time. Mom came, rinsed out my mouth, then realized I had a loose tooth.

I’ve been to the dentist before. We learned then that my teeth were different. They are discolored, kind of orange tinted; and because of my bilateral cleft lip and palate, they’re all over the place.

Mom wiggled the loose tooth and it came right out. It was hollow, thin, and weirdly shaped. Honestly, I can’t even tell it’s missing.

COVID-19

COVID-19 has taken over the world! We have been quarantined since March 13. My brothers and sister are doing school work at home. Even my big brother is home from college. It’s fun having everyone home but it’s not so fun being on lock down.. The recommendations are to hand wash, be socially distant, and wear a face mask. We enjoy the sun from our back porch; and some times we take a drive. Overall, we are sheltered in place, literally!

Many of my annual specialty appointments were cancelled. The hospital called saying we should not come in. One appointment was through TeleHealth via Zoom. I had my 3 year old check up in town but that was it.

I was supposed to start school on April 6 but COVID stopped that. I am getting online instruction like my brothers and sister. My Mom is really focusing more on my PT/OT and speech skills; especially since I’m not receiving services right now.

Hopefully COVID will soon pass and things will get as close to normal as possible.

BILATERAL CLEFT LIP

I was born with Bilateral Cleft Lip and Palate. I wasn’t even a year old and I was prepping for surgery #3. This surgery was to close my cleft lip. Surgery was scheduled at Children’s Hospital of Alabama. We planned for 2 days; we were there 4. Everything went exactly like my doctor said it would. My face was swollen, I had a plunger in my nose, and I had to wear arm splints; but everything turned out good. One of my nurses [even] said we’ve “changed her life”. We contradicted everything she learned in nursing school about Trisomy 18.

After surgery I was given nutrition via IV fluids. I had to stay inpatient until I was able to take my bottle. After many attempts, I finally got it and they let us go home!

I developed this skin rash on my head; not sure how. The doctors treated it, as best they could, while I was admitted. I was referred to Dermatology. After a few visits, and several cultures, we were told it was Staph.

BORN DAY

My mom was induced at 39 weeks. The doctors didn’t even think we’d make it that far. We got to the hospital Monday morning, March 27. Mom was prepped and taken to a room. They gave her medicine and started an IV. After 16½ hours I was born early Tuesday morning, March 28. There was a room full of doctors. They were just standing around; looking at Mom, looking at me, looking at the clock. My breathing was shallow. I had a really soft, faint cry. I was looking around too. After several minutes, the doctors told my Mom and Dad to enjoy their time with me, I would probably pass away soon.

The doctor told Mom “he looks consistent with everything you’ve been told”. Mom asked for me. I laid on Mommy for the first time. Dad asked if someone could clean me up. One of the nurses did. After about an hour, Mom asked for bottles to feed me because I couldn’t latch to her. Instead of bottles, they brought Mom a syringe to drop infant formula in my mouth.

The entire stay folks came in saying I would “probably die soon“. They refused to confirm my diagnosis. My temperature was low; mom asked for blankets from the warmer. We didn’t see a lot of the normal doctors. We saw the bereavement teams and spoke with people about what we needed to do if I died. I had jaundice that they would’t treat. The doctors said it wasn’t necessary. I didn’t get newborn screens or any of “new baby” stuff.. I never left our room. I stayed with Mommy the entire time and that was the best unplanned plan EVER!

5 SURGERIES BEFORE 2

I’ve had 5 surgeries and I’m only 2½ years old.

I had my first surgery when I was about 7 months old. I was born with bilateral cleft lip and palate; and the only way to close it is by having surgery; a lot of them. The first doctor we saw said he could close it using a (Latham) device. It would pull my face together and make the surgery easier. He had my mouth fitted for the device and surgery was scheduled.

We had to be at the hospital really early in the morning. I was prepped and taken from my parents. After a few hours, the doctor had the device in my mouth, he gave my Mom a screwdriver that she and my Dad would use to turn the screw in the back of my throat, and we were supposed to head home. While in recovery I started having troubled breathing. We later learned that my airway is super tiny and the device was blocking my air flow.

The doctors where we live were worried because I wasn’t breathing good. One of them ask my Mom, “why did you come to a hospital that doesn’t have a cleft team?” Mom: “we didn’t know you didn’t have a cleft team; this is where our doctor told us to come”. An outpatient surgery turned into an overnight stay. Overnight turned into 5 days before being airlifted to Children’s Hospital of Alabama. Because now, I can’t breathe and I’m bleeding from my mouth.

The doctors at Children’s said we should take the device out and start over; especially if that’s when my troubled breathing started. The device was removed and I started breathing good again! Now we know, my tiny airway can’t handle obstructions. I was given a tube feeds with an occasional bottle. After 6 more days in the hospital, a few Barium Swallow tests, and several labs, I was ready to be discharged home!

THE BEGINNING

Mom and Dad found out about me in the Summer 2016. Half way into the pregnancy, the doctors said I had Trisomy 18. They said it was 99% accurate too. I would be severely delayed, have a bunch of health issues, and would probably die. Mom was scared. Dad was strong. My brothers and sisters didn’t know what exactly was happening; just that I would be really fragile and sick.

Mom wasn’t eating well. Her blood pressure was high. Her doctors finally put her on bed rest. She quit her job because she wanted to keep me safe. After weeks on bed rest, we got a new doctor because our old doctor didn’t think our (local) hospital could handle my diagnosis. We went in early one Monday morning. The doctors gave Mom medicine to have me. I was born March 28; the day after one of my big brothers (Josiah).

We stayed at the hospital for a few days before coming home with hospice. I met 2 of my 3 brothers and my 1 sister. My biggest brother was at school, in college. The hospital had the special nurses meet us at our house. They came a few times a week in the beginning; then just twice a week.

Mom and Dad had to learn how to feed me. I have a long list of issues. The doctors said I was missing parts of my brain, my esophagus was offline, my heart was messed up; I had clinched hands, rocker bottom feet, one working kidney, my liver was weird, and I had a hernia. I have a few more things but we didn’t know about them until later. Our hospice nurses came for 6 months. They discharged me when I was almost 7 months old because I was doing good. We were okay with that!