Thank you all so very much for all the wonderful thoughts and prayers you sent our way. I am so thankful that I have so many amazing friends (whom I've never even met) that care so much about my family and me.
We still have a long road ahead of us. We still need to have the genetic testing done. I do not know when that will be yet. I will keep you all updated on our progress.
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Do you have a super hero in your life? I do! He's only 28 ponds and 3 ft tall. He's my beautiful son, Jonathan. He is definitely my hero. He has taught me so much about love and life. Jon has taught me more than he'll ever know. I look at everything he is faced with every day of his life. He's overcome so many obsticals since his birth. How does he do it? Where did his amazing strength and bravery come from? Jon is simply amazing to me! A beautiful soul, so brave and strong.
Most of you know our struggles with our son's health. Well, we have some new answers and even bigger questions now. We overhauled Jon's healthcare and switched him over to all new doctors. We researched and found some of the best doctors in the area to look at our son. He loves his new pediatrician and we do to! she is great! And she actually WANTS to find the answers to what is happening to him.
So we go to see her for the first time on Wednesday. She examined Jon-Jon and said a few things that I was not expecting to hear at all! First off, she said Jon-Jon has Sensory Integration Dysfunction. That part is not surprising at all. Our OT has been talking to us about SI Dysfunction for a couple months now. The next part was shocking though. She said that Jon has a large heart murmor and needs to see a cardiologist. So Jon has to go see a children's heart doctor on Tuesday. He will have an echo cardiogram to see how severe the murmor really is. He also needs to have a genetic blood panel test. They are looking for Fragile X Syndrome (a common form of mental retardation that can vary from mild to severe). A lot of Jon's characteristics and behaviors match up with Fragile X. There is no cure for Fragile X. Just ways to manage the symptoms and behaviors.
We were so shocked and scared to hear this news. I'm scared for Jon-Jon. But I am having to be HIS hero in front of him. No tears in front of him. All that will do is make him stressed and worried as well. He has enough to deal with. I have to be brave for my hero. I have to show him my strength now.
Please, if you believe in prayer, pray for Jon-Jon. Tell your friends, family and co-workers to pray for him. I believe that prayer and our Faith in God will get us through this.
Hug your babies tonight and praise God!
My hero. So brave and strong.
He bites his lower lip when he is being michevious.
My favorite!
Look mommy! Airplane!
Even a super hero still needs his daddy.
Flying Lessons.
(click storyboard for larger view)
