Meet Zach - the reason behind MyButtonBuddies
Here is Zachary. He is the reason that MyButtonBuddies came to be. This is where our story begins.
Photo by: Kori Gedris Photography
http://www.kgedrisphoto.net
Although Zach still has health issues, he is now a happier, healthier, thriving 3 year old with the help of his g-tube and special medical formula (Elecare). But for the first 2 years of Zach's life, we struggled with what was wrong with him. He wasn't developing right, he wasn't gaining weight or length like a typical child would. Zach would get sick every time he ate. He did not talk; he had no sounds. He never rolled over, he hardly crawled, he was very weak. He would sleep 20 plus hours out of the day.
It was not until Zachary was 3 years, 7 months and, 9 days old that we got the devastating diagnosis of Mitochondrial Disease. Please visit http://www.umdf.org to learn more.
Our first pediatrician kept taking the "let's wait and see" approach. This was not working and Zach was wasting away before us. I decided it was time for a new pediatrician. I took Zach the next day into an new doctor's office near our home. The doctor took one look at Zach and asked how big was he. I told her at that point he was shy of 19 lbs and over 18 months old he was only 30 inches long. At this point he was also vomiting every time he slept and instead of staying steady with his weight it was all coming off. She immediately took action getting Zachary into all the right doctors to help with his case. All of which told me had we waited our son very well could have died.
It was a short 4 months later where the decision to place his g-tube was made. After that decision it was less then a week before the surgery (he was 25 months and 1 week old). By this time Zachary was down to 17 lbs. Surgery was set for October 23 2008 – a day we will never forget as he almost didn’t come through the surgery because he could not hold his oxygen levels. He was on oxygen for the next 48 hours until he was well enough to keep up his own oxygen.
It has been over a year since his tube was placed. My little man has grown a full 10 pounds and over 6 inches in height. He still has other issues but he has become stronger. He no longer sleeps but for the night and his naps. He has sounds, better yet, words. He still has a way to go BUT he has come a VERY long way from where he was! He will have a life long struggle with his diagnosis but with the help of his G tube we are hopeful that he will stay strong.
Zach's tube truly was his life saver and continues to be. We've been told he will more then likely have a g-tube for the rest of his life. It could be worse, all I know is his tube has helped him and I'm not so scared anymore.
Zach is the reason behind MyButtonBuddies. After his surgery I was having such a rough time dealing with everything. I took the idea of colorful cloth pads to my mother-in-law (aka Toni Szilagyi) who went right to work making Zach his first set of pads: trains, dogs, and woo-woos (fire trucks). They were so much better then gauze - I found myself only needing to change once a day verses three times a day and being able to smile because it made his tummy look so much better and much less scary. The pads were so much better because I could reuse them instead of throwing the gauze away. We have never had any issues with GT (granulation tissue) since using the pads. All the comments when people see his stoma now also make both Zach and I feel better about having to be tube fed. Now that he is older they are great too because he get’s to pick what he wants to wear.
That is it – the reason behind MyButtonBuddies.
In learning to deal with all of our issues, I decided way back when to start a blog, it has really helped me to relieve my stress. Please feel free to follow on our journey
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