Sunday, June 10, 2012

Bee-ography Monday


This week's bee-ography comes to us from Abel's mommy, Amanda. Thanks so much, Amanda for sharing your sweet boy's story with us!


My sons name is Abel D. Johnson. He was born on October 19, 2011. He was born with a rare diagnosis of Hydranencephaly. I had no clue what that was. When they first told us of his diagnosis I was still pregnant. 


At this time my husband was deployed to Iraq. We were devastated, this was our first child and all I knew about his diagnosis is that the Dr. told us he had no chance at life. No parent wants to hear that about their unborn child. 


I still had no clue exactly what my son had. I went into a Dr. appointment with so many questions and I was just confused. That's when they told me he had Hydranencephaly. 


They said my son would probably not live past birth and that if he did he would not make it past a year old. They also told us he would be deaf, blind, and a vegetable. He would not recognize us, learn, or talk. 


We truly did not know how to take it or how to react. I know I cried allot. I know my husband was devastated. So when I went into labor early we really weren't prepared to take home a baby. They all told us we wouldn't be taking him home. 


When Abel came into this world it was heartbreaking. He did not breath at first. I remember the smallest cry. I think me and my husband where overjoyed. He was breathing on his own that's all I cared about. 


He had another MRI done when he was a couple of days old to confirm his diagnosis. We were able to take him home after two weeks of being in the nicu. 


Abel is now 7 months old. He is the greatest miracle that me and my husband could have ever asked for. We have had plenty of scary situations. At a month and a half he stopped breathing on us. Of course when we got to the hospital he started breathing fine. My son loves to keep us on edge. At 5 months he had his shunt placed. 


The most recent thing we are dealing with is his stomach issues. We went to the hospital on May 10th because he wasn't eating very well and his sodium levels where really high. While we were at the hospital the doctors let us know that his digestive system is starting to shut down. That it is not processing or getting rid of the food we put in. The only thing they could do for our son is put in a j tube or have a mickey button placed which means surgery. The doctor let us know that both would be temporary solutions. He said his stomach would completely shut down and then his intestines would no longer work. Me and my husband made the hardest decision of our lives. We decided to take him home. we couldn't bear the thought of another surgery or having more hospital stays. Abel was miserable he was getting poked every six hours sometimes by vein and mostly by cutting his foot. He wasn't sleeping and cried constantly. He looked miserable he wasn't happy and I could see it in his eyes. So we brought him home to spend as much time with him as possible. 


We love Abel so much and I don't know what I would do without him. Our little miracle he truly amazes us and all his doctors on a daily basis. My son is my hero because he does the impossible everyday, he lives with only brain stem and very little brain matter. He does what everyone said he wouldn't. When no hope was given my son showed us the way. For that I can only thank him because he showed me how to live no matter what is said. Yes my son has Hydranencepahly, but I have learned that this doesn't define my son! My son has defined his diagnoses as to what he wants to do not what they said he would do. You have to love the little fighter or as allot of my husbands army buddies call him our little "cav scout".



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