Sunday, February 19, 2012

Viruses, disorders, Worry Oh My!

What Immune System?
I know it's been a long time since I've written anything. Johnny has had so much going on in his little preemie life. Johnny has a weak immune system and has been ill for weeks. Every time he seemed to get well, he'd be catching something else. His immune sysytem never has time to recover. Doctor says he has to becareful because of the damage to his Broncioles when he was intubated and his Reactive Airway Disease. He is supseptible to Pneumonia. He woke up with croup one night. He woke up crying. I went to comfort him and he was so hot, it felt as if he was sitting under a heating lamp. His breathing was so shallow. He was given to albuterol treatments and he still couldn't breath. He had to taken to the hospital for steroids and another treatment. He has had many viruses that has left him weary and tired. He then was diagnosed with Bronchioitis. He was in pain and to breath Hirt his lungs, chest and throat. Nothing I did could have made him feel better.

Percousious what?

He is being tested for Percousious puberty. This condition is described as a child's body going into puberty before it is suppose too. This includes: in boys body odor, hair growing in private places, enlarged private parts, increase in height and weight. In girls breast are formed early, menstrual cycle starts, hair grows in private places and height and weight may increase. Remember keep in mind Lj is only 2 years old. He has to have many blood test and take medications for the testing. He is also having lots of tests to find out why he isn't sleeping well or gaining weight.

My family have been waiting for diagnosis and treatments and as usual it takes time. Time that I wish I could rush because the worry and the strain of not knowing takes a toll on my mind. My health is starting to fail a little and this whole situation takes me back to being in he NICU all over again. Lj is 2 and I still feel as if he was just discharged yesterday. To watch him go through all of this, I fall deep into having stronger "preemie guilt". He looks happy but he is trapped in his little body. He still does not speak like he should. He doesn't prompt anyone when he needs anything or wants something. He is still babbling. His SPD is still causing him to swallow foods whole instead of chew and he doesnt like textures. He doesn't like things on his hands nor face and he doesn't like loud noises or being in big crowds.

The life of a preemie toddler. To be continued........


  1. Aww...sorry to hear this. I'm praying you all. I know that God will bring you through this and LJ will get better. Hope you two get well soon!

  2. Hate that the baby is sick I hope you all find out the cause so he can get on the right track to getting better. He is growing though so cute.

  3. I cannot imagine what you are going through, that must be so hard. And to see your little one having to go through all those tests..I'm sorry, Momma! Stay strong.

  4. xo to you and your family. You are in my thoughts. Good vibes your way. xoxo hug that beautiful baby for me.
    Big Hugs-