PETE

Meet Pete!

My husband and I were expecting our first child on Feb 16th, 2015. When we saw his little foot on the ultrasound we were in love. Our first screening test came out positive for Spinal Bifida, but anatomy ultrasound cleared any of this abnormality.

When Pete was 20 weeks in my tummy, his head was measuring two weeks larger, when he was 30 weeks, it was 6 weeks ahead. Pete was born 37 weeks on Jan 29th, 2015. He was 9lb 12 oz, 15 inches, and HC 15 inches.  His 3 min Apgar score was 3, 10 mins was 7. He had a respiratory distress right after the birth, moved to NICU immediately.

Thankfully he stayed there only two days. He failed his hearing test, so we agreed to take him to auditory testing, which ended up being three long years of testing. Pete had a surgery when he was 1.5 years old to drain the water in his ears. Inner tubes were placed in both ears and his enlarged adenoids were removed.

Pete’s head circumference kept growing in excessive speed. At his 2-month-old checkup, his head size measured 97%, 4 months old checkup it measured 99%.  Pete’s pediatrician recommended to get an MRI when he was 4 months old.

His MRI only showed benign hydrocephalus, 4 different pediatric neurologists agreed that nothing was wrong with Pete, and he should be fine. They said, he should be catching up when he was 3 years old.

When Pete reached 6 months old, he still could not hold his head up.  He was not sitting or crawling, and his head was still growing sway too fast for benign hydrocephalus.

On Aug 13th, 2015 when he was 6 ½ months old, Pete started physical therapy. His physical therapist mentioned that he has hypotonia.

Since Pete could not hold his head up, feeding was a little challenging as well.  Our pediatrician wanted to wait until he was 7 months old to start the solids. Then we needed to make sure we had a highchair which could recline.  When he was 8 months old, his ophthalmologist found his right eye was sliding outwards. And she recommended patching it.  Pete started to sit with support when he was 11 months old.

By Pete’s first birthday, he was already diagnosed with global delays and we started services. Our neurologist at that time, suggested we see one of his colleagues to get his opinion. When we saw him, he said that his head growth was way too much for benign hydrocephalus. He thought there was something genetically abnormal with Pete. He recommended to get a genetic test to understand what really is going on with our son.

By Pete’s first birthday, he still could not walk, crawl or use his hands. He started to say several words and mimicking sounds when he was 9 months old. Our neurologist said that at least we did not need to worry about his IQ, he thought his speech was earlier than normal. On his 1st birthday, he lost all his speech.

Pete finally started to sit unsupported. He still could not raise himself from the ground, but when I put him in a sitting position, he could stay like that 10 mins or more without falling.  One of the hardest things for us is to find a hat that would fit Pete. Regardless, he rocked everything!

When Pete was 2 ½ years old, he still could not walk or talk. He started to bear some weight on his feet.  Pete started to walk with the walker when he was 2 ½ years old.  Pete fed himself puffs first time when he was 2 ½ years old.

Pete is currently 5 years old. He is still cannot walk without support and he is non-verbal.

Pete was diagnosed with Smith-Kingsmore Syndrome when he was 3 years old. A condition that only 7 people in the world had it when he was first diagnosed, now we are more than 80 people. Still not much is out there about the condition.  We, the parents, still try to understand the possible outcome of it, how it is affecting our little ones.

Pete is a kind boy, who loves to look at the books, listen to music and watch movies with us. He is our little Hufflepuff.  He tries so hard to communicate with us, but just doesn’t know how. He is an excellent brother. We love him more than words can describe.

His condition limits him, but does not define him!

Written by Qzan, Pete’s mother