#my neuropathy has been slowly developing over the last 5 years. like. i only just turned 22

[mrlesbian]

i love how the medical advice i get to not make my condition worse is to simply control it. like wow cool, idk why i never thought about doing that before, thank you i'm cured :)

[phoenyx-rose-blog]

Meet Zakary Dean

June 2009, I was blessed with the birth of my long-awaited second son. A Gemini, born at 7 lbs 14 oz. and 20 in. long, who knew this little stinker would grow to be the pride and joy of my life?!

He reads above grade level and writes with the prettiest handwriting. He even has his first ‘girlfriend’. What am I gonna do with him?! 

Time goes by far too fast! My baby boy isn’t such a baby anymore. He is outgoing and friendly and the most loving little boy you have ever met!

He loves video games, Legos and Hot Wheels. He enjoys school and has mastered Common Core Math. He is rather brilliant for his age.

If you’re feeling down, all you need is a hug from this little guy! He’s had his own struggles in life though.

He’s suffered two severe concussions in his short life. The first was when he was 18 months old. He was trying to climb up the bunk bed ladder and his sister, thought she was helping by placing a pillow across the top to block him. 

When she did this, she actually pushed him off the ladder and his head hit a very large door hinge. He had a small compressed skull fracture, severe concussion without hemorrhage and minor loss of vision. 

He should have had 8 staples but in the end he got 4. He was holding his breath and passing out while the doctor was placing them so the decision was made to prevent any further brain damage and give fewer staples.

The second was last summer, the day before school started. He was jumping on the trampoline. The kids decided to have a jug of tea on it and play a game where you have to jump over the tea jug. Well, he did…

He dove clear over the tea jug AND the side of the trampoline. He landed on the front left part of his head! Knocking himself unconscious for almost a full minute. He was unresponsive and I was terrified!

He was curled in the fetal position and everything I have been taught said, “Don’t move him.” but damn it! My baby wasn’t breathing!! So, I slowly turned him onto his back and by some miracle he gasped for air!

At that point I probably should have been calling an ambulance. But we lived in the middle of nowhere, with only a volunteer ambulance corps and it would take the crew longer to get to the ambulance than it would for me to drive him to the emergency room myself. So, that’s exactly what I did.

After several hours of observation, in and out of lucidity, x-rays, CTs and multiple other tests, we were released with orders for no gym or physical activity until further notice. 

He suffered from nausea and headaches for almost 60 days after. However, today he is back to his normal happy little self!

This year, on July 2nd, he presented with a rash. Not a normal raised and bumpy or itchy rash but a smooth purplish red rash instead. We watched it for two whole days until it was completely out of control and we had tried everything. Creams, ointments, baths, home remedies, ice, heat, allergy meds, etc.Nothing worked.

On July 4th, just in time for him to see the fireworks across the street, we arrived at the ER. He was evaluated and sent home with a ‘Virus’ as his diagnosis. . .

WRONG! 

Two more days pass and he kept getting worse. Now he developed a neuropathy in his hands and feet that was excruciating. So we went back to the ER on July 6th. 

He was evaluated again and this time he was transferred to Methodist Children’s Hospital in San Antonio. It was the best thing that could have happened. He spent 5 days there, all the while being treated like a prince. 

After the 5 days were up, the rash was gone and gabapentin was helping with the neuropathy. He was discharged. We had no answers after dozens of tests. Just referrals to several specialists.

We did however, find out that he may have Bi-Cuspid Aortic Valve in his heart. Its a pretty serious condition that will be with him for life. He sees the Cardiologist on October 9th to repeat his Echo an confirm. We are hoping for good news.

You’d never know that he was or is sick. He still plays and acts like he did before his episode. If nothing else, he is resilient! He will most definitely always be my little fighter!

This is Zakary, 6th Child, 3rd Son, My Knight in Shining Armor!