Becoming Aware

Hi everybody....

I know it's been a while, but like I've said before it all seems to be the same information over and over again. However, we do have some new information. Most of you already know that Kaden has been on a teeter-totter with his health over the last few months. He's still dependent on eating through his g-tube, and struggles with keeping his energy levels consistent. We've dealt with more pneumonia's, more apnea (when he stops breathing), more G.I. bleeds (when his tummy bleeds on the insides), and now we experienced something called Convulsive Syncope along with three other alarming and scary symptoms. Kaden's blood pressure swings so widely that his brain can't seem to handle the drastic changes. His heart begins beating very erratically and it has several pauses were it just stops beating, but than starts again. He goes into "spells" and the episodes vary greatly. 

It seems as though this disease process of Dysautonomia can overtake his ability to function normally at anytime, and anywhere. We spent a few days down at MUSC again last week and again we were told "we really don't know what to do to help him, he's just so complex". His blood volume was very low and the team wasn't even able to run any blood work on him. He demonstrated Rolandic Epileptic Discharges on his EEG (test with wires all over his head to check brain activity). We are unsure of the significance of this discovery. There are so many other medical things going on...yet to the untrained eye his illness remains invisible. His team of physicians are reaching out to other specialists throughout the US to see if anyone can wrap their head around our special little boy. This news just downright stinks. However, I know that we won't be given more than we can handle.

I must say as a parent, this reality hurts. Unanswered questions leave very little hope and cause overwhelming feelings of helplessness, vulnerability, and emotional exhaustion. I can't say that this tight rope we walk is anything but reality anymore. Our real struggle at this point is not knowing "why". We have to turn our cheeks to anger and resentment or we will all go crazy. The negative emotion is so deeply rooted that it is difficult to face our reality and therefore we function as a typical family the best that we can. We find ourselves acclimating to Kaden's needs often. 

Kaden is a reader now and is loving Kindergarten. His teacher is phenomenal and meshes very well with our family. She is very patient with Kaden and he enjoys school. She comes out to the house three days per week now and he is working on learning math. Also, Kaden still attends physical, occupational, and speech therapy to help overcome some struggles with daily life.

More importantly, he is becoming more and more aware of well, ....everything. He knows he's different and I find myself staring at him often, watching him process what he's feeling both physically and emotionally. He's amazing at describing what he feels inside of his body and telling us what he needs but indeed feels lonely and sad that he's so different. His happiest times are playing with Daddy but we must be careful or he will burn too many calories just playing.

Anyway, I wrote this today as a simple update. My head and heart are not in the right place for anything but facts. Please keep Kaden in your prayers and thoughts along with his siblings. 

Kylee, Evan, and Brandon...you guys are the best! We are so grateful for you selfless sacrifices to ensure the best quality of life for your little brother.

Kaden- as for you son, keep on trucking. Your resilience is admirable and makes us stronger too. Keep in mind as you read these blogs as you grow into a young man that God did a perfect job matching us together. 

Take care Everyone...

Love, us