Second Annual “Blogging for TSC Awareness Month” Day 12
by guest blogger Shannon Arndt (Newport, Michigan)
Bladen. For so long Bladen was my imaginary child. You see I had his named picked out before I even met his father. As soon as I heard the name, I knew. This would be the name of my son one day. I envisioned a strong boy, popular, good-looking and with a pretty awesome name. Once I met my husband, Russ, we couldn’t wait to have our first child. We started trying to get pregnant on our wedding night.
My pregnancy had gone pretty smoothly. I worked, ate and enjoyed telling anyone willing to listen that I hoped to have a boy. And as luck would have it, we found out we were having a boy!
Around 31 weeks, I had been running around, arrived late to work and just didn’t feel right. I called my OB and he said to come in. They couldn’t get a good heartbeat and said I was really dehydrated so off I went to the local hospital. There they hooked me up to IVs for fluids and I got to see my baby again via ultrasound. The doctor said everything looked good but wanted me to come back to see a perinatologist. We made the appointment and two days later Russ and I were at the appointment excited to see our baby again.
I remember joking around, laughing, looking at the pictures. Clueless to the technician leaving the room, getting the doctor. The doctor hadn’t said anything, probably because I was talking so much. And then it happened.
Another doctor walked in and said, “How many tumors are there?”
I couldn’t speak, I looked at my husband and we both just started crying. We were handed a copy of a page out of a medical book. Tuberous Sclerosis Complex. Not only our lives changed that day, but I changed.
Our son had rhabdomyomas in his heart. Tumors that were growing in his little heart. For six weeks, I was monitored twice a week by high-level ultrasounds. Waiting, waiting to find the right time. I spent my time scouring the Internet for any information and crying, mourning, worrying, feeling toxic to my own child. Timing was key. We wanted him to grow and not have other complications, but not too long or he’d go into heart failure. At 37 weeks, it was time. His heart started developing fluid around his heart, a sign of heart failure.
The next day, with about 20 doctors in the room, I had a 8lb 2 oz, 21 1/2 inch long baby boy. His heart? Well, I literally squeezed the fluid out!
At 5 months, he had his first seizure and shortly after, I quit my job.
I’d spend most of my time going to doctor’s appointments, playgroups, play dates, swimming, anything that would help my son.
12 months, he crawled.
16 months, he walked.
He went to OT, PT and eventually speech.
He’s had numerous EEGs, overnight EEGs, MRIs and ultrasounds.
He went to a special needs preschool at 2 1/2.
A month before he turned 5, he was potty trained!
Two weeks after, he also had brain surgery to remove a SEGA brain tumor.
He started mainstream Young5 with a para-pro.
Then was diagnosed with ADHD.
He started mainstream Kindergarten with a para-pro.
Then was diagnosed with anxiety.
He is currently in mainstream 1st grade with a part-time para-pro for his anxiety.
And, he has made honor roll every quarter so far!
He has friends.
He is happy.
He is loved.