Strength of my Son

I remember the awkwardness when visitors come to the wide open PICU (pediatric intensive care unit) room where Jonah's life less body laid in a medial hospital crib. I would try to keep a smile on my face to help my company feel more at ease, but really how could you not stare at the 3 month old with tubes going into his mouth and on a device that was louder then loud and shaking his fragile little body just trying to keep him alive.

January 13 2008, 4 years ago today, Was the day I knew that my life was going to be different.

I still have trouble getting my head around all of it and I suppose that is because I am for the most part still "just surviving."  My family has traveled a very bumpy road with mostly just having the support of each other.  Our families are not in the state and friends have come and gone. Only the really brave friends have stood by our sides cheering us along when the road seems to rough.

I look at Jonah today and am in awe of his mighty strength.  Diagnosis after diagnosis, therapy session after therapy session, he is amazingly strong. I love this child with all my heart.

Diagnosis 101

So, I thought I had posted on this before but I cannot find it... Must have been something I day dreamed. I will post this for those who are confused, and perhaps for myself because it is too much at times to keep up with. Jonah to date: Oxygen. feeding tube placed for aspiration which has/still does cause conflict when swallowing thin liquids ie, water. Nissan surgery. Adenoids removed due to airway issues. Chrionic lung disease (this is what they call it when your child is always sick). Non Cystic fibrosis Bronchiectasis, Basically the lung disease of cystic fibrosis with out the enzyme issues. PDD-nos (pervasive development disorder-not otherwise specified) "autism". Speech apraxia- slow motor planning. Sensory processing disorder. Priapism- errections lasting over a long amount of time (jonah's record 16 hours). And soon we will find out why this kiddo has not grown in over a year... I think this is the list. I might be missing something, I will add onto it as I remember. You see I just call this list by name, I call it Jonah. In real life this list is one of the most amazing creatures you will eve lay your eyes on.