Duplication: partial trisomy of 4q13-pter and partial monosomy of 18q21-18qter
Lived in: Oklahoma, USA
My son, Gavin, was born January 31st 2004. My life and the lives of those around us would be forever changed. He was born with multiple health problems including a cleft lip and rocker bottom feet. He was the biggest baby in the NICU. It took a few months to find out his karyotype of partial trisomy of 4q13-pter and partial monosomy of 18q21-18qter. His Chromosome abnormality was a result of a maternal genetic disorder we didn't know about. He spent the first 7 months in the hospital as a result of aspiration. He had his first 2 major surgeries during this time too. By his first birthday we still didn't have clear answers on what to expect. We just knew how to love him, and that's what we did.
As we went through the early years, there were multiple appointments, procedures and surgeries. Gavin progressed at his own pace but was full of personality. He had a mic-key button and didn't eat by mouth. He spent a long time transitioning from the army crawl to actual crawling. Due to his feet, he couldn't walk but did start to pull up a few months before having his feet reconstructed in the fall of 2007. He had a lot of complications from that surgery that set us back, but eventually he healed and was back to standing. With new feet, he was finally able to start bouncing at the TV and explore his world differently. We still struggled to understand things, but he went at his pace a little faster now. We learned his non verbal communication. We learned what he liked or disliked. We learned he was a tough little boy full of determination. In April of 2008, he had a port placed that allowed us to keep him better hydrated. While we had what became normal admits every winter for RSV and pneumonia, our stays became less frequent now.
The next few years were full of new adventures. I even enrolled him in school for the 09-10 kindergarten year. He wasn't a fan but loved riding the bus. We decided school wasn't for him after that. I stayed home with him and spent every day making sure he knew how loved he was. In 2011 he went in for his 2nd hypospadius repair. Unfortunately there were many complications and we spent the entire summer inpatient. During this time we discovered he had a hernia that pushed into his lungs. No one wanted to operate yet since it was so risky.
In January of 2012 Gavin's Make A Wish trip was granted. We spent an amazing week in Florida going to Disney World and discovered he LOVED rides! Fast ones. We spent the rest of that year traveling and going to different doctors. By 2013 he stopped progressing. He no longer tried to walk or talk. He became very aggressive as well. You could tell he had changed. He wasn't my happy goofy Gavin every single day. Then, in July of 2014, he was admitted because of a bad port infection. We only stayed for 8 days then came home while I administered the remainder of his medication. There wan't much improvement.
In August he was admitted again. I had no idea that our lives would never, ever be the same. We spent the next 79 days inpatient. On August 25th, he had his 10th major surgery. The hernia was a big mess of stomach, intestines and pancreas wrapped up and shoved into his lungs. We spent months trying to get him back to "normal". His intestines never fully woke up. We began having other problems and even after being discharged in November we couldn't stay outpatient or without ER visits for longer than a week. Even with 2 more surgeries and multiple tests, nothing could be done to fix him.
After spending our first Christmas inpatient, we went home on January 9th. His liver problems caused him to constantly be yellow, and he just wasn't himself. On Gavin's last good day, January 15th, he smiled so much and just wanted loving. I didn't know that would be the last day I had him chase me down and put his little hands up to me to pick him up.
After a few more admits, we went in on January 30th. The next day was his 11th birthday. It didn't feel like a birthday or a day to celebrate. At 8:45am on February 1, 2015, my baby became an angel.
I was told he wouldn't see his first birthday or do things other children would. He did bigger things. He laughed, played and lived. It might have been in his own world, but my son was amazing. Anyone who knew him knew this. I wouldn't have changed him if I could. Gavin showed us a different life, and for that, I will be forever thankful.
- Super G's mommy
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