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Zack’s Story

In the words of his mother, Irene:

Zack was born at 37 1/2 weeks and weighting in at 8 lbs 7 oz. He had jaundice and the doctor was checking his sugar because he was big for an early baby. I was on bed rest for a month because I was going into early labor. Zack had a spot on his tongue but everthing else looked normal including his head. Zack liked his right side more then the left. He couldn’t roll over because his left side would stop him. I told the doctor but she wasn’t concern about it. Zack’s head was getting bigger. When Zack was 2 months old, we noticed a lump on his back. To make a long story short we was told the lump was a fatty tumor common in some babies not to worry it won’t grow. The doctor will deal with it when Zack was a year old. I noticed Zack was doing alot of things later then his brother did at that age. He sat up at 9 months. Zack bounced on his butt to get everywhere he wanted to go. Just sat in his bouncing seat and never rolled or crawled. The lump on his back keep on getting bigger to a size of a grapefruit. The doctor sent us to Riley Children Hospital to Dr. Billmire. She told us Zack was going to have surgery but she was worried about his head size. She called the genetic doctor. He came in and asked Zack’s dad and I alot of question . He said I think Zack has PTEN mutation. So he asked for a blood test and result won’t been in for about 3 weeks. Zack was only 11 months when we found out Zack had Cowden/BRR syndrome. Zack’s first surgery was December 2008 to remove the fatty tumor. The genetic doctor had little to no answer for me about this syndrome. I googled and research everything about this syndrome. In mean time Zack was developing very slow for his age. Zack was hospitalize for a lung infection in Feb. 2009. In April 2009 Zack was put in First Step program that helps with children with development delays. Zack had two more surgery to remove fatty tumors and hernia repair April 2009 and June 2010.April 2010 Zack has seizures now taking Lamictal to control them. He also has low muscle tone and a head measuring 55 cm about a medium adult hat size. He takes marilax for bowel movement issues. He learned to walk at 23 months old a week before Christmas. Zack is in and out the doctor office with lung infection then put on a breathing treatment machine during winter months. I can tell when Zack is going to be sick when a child with a cold is with him at daycare about 3 days later Zack is down for the count. Nov. 2010 Zack had surgery to remove a mass on his testicle. I know we aren’t done with surgery the other day I noticed the lumps on his chest has gotten bigger. His whole back is covered with fatty tumors. I been very blessed that he hasn’t been that sick. Zack will start preschool in January. I’m very blessed to be called Zack’s mom. He is one amazing kid with no fear. Always happy and never afraid to tell you when he is mad. I know there is going to be bumps in the road but I’m up for the fight.”

3 Responses

  1. Irene Short - February 19, 2012

    Just a quick update on Zack. Zack had surgery on August 2011 for a G-tube because he wasn’t putting on enough weight. He struggle to eat because all his sensory issues from texture to a smell of something. We started taking him to a feeding therapist. She said Zack had a bad experience with food which scared him so he fears food. He is having problems with thin liquid getting into his lungs when he swallows. Thin liquid includes juice, water and tea. He still struggling to keep up with his peers but its amazing how far he has come around. He has two fatty tumor on his chest and all over his back. The doctor will remove the fatty tumors sometime this summer.

  2. PTENLife - February 20, 2012

    Thanks for the update! Tommy had some issues with failure to thrive and aspirating. I hope Zack outgrows them like Tommy did. Keep us posted.

  3. Irene Beeman-Short - September 4, 2013

    A lot has happen to Zack since last posted, he been diagnosed with Autism in Nov. 2012 and G-tube is still in place. Zack has obstructive and central sleep apnea and sleep with a machine to help with his sleep apnea. He started Kindergarten so far he is doing well. We had about three more surgeries maybe more but who’s counting. Two more tumors removal and tonsil &adenoid removed. He still doing therapy and just added behavioral therapy to deal with the Autism . A IQ test showed Zack is behind his peers and his skilled level about a three to three half year old child. As Zack gets older he maybe label with intellectual disability. Zack’s story is always changing and more chapters are being added to his book of Pten.

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