Hope for Life

The silence here at night is deafening. Once in awhile a child screams out in pain and I am numb to it. There was a time I would have cringed at that sound, my heart would have ached for them. Not now. Now I think 'thank god that child has the strength to scream, the energy is there, they are alive.' Alive...not well, but alive. I took too much for granted, now I need hope for life. Stay strong little man...you are my hero.

Friday, March 11, 2011

It's me again...

Wow! So where do I begin? I apologize for not posting in awhile but I have been too busy. The last two and a half months home have been crazy!

Christmas and the new year were kind of a blur....lol. Our first weeks home consisted of adjusting, learning and back to back Dr.'s appointments. I felt like I was never home. We had a week of clinic appointments in Vancouver and we had no new news and no changes to any of the meds or feeding schedule.

February: Admitted to hospital for stomach flu. Some of the Dr. visits slowed down but other things picked up. We started Physio and speech therapy on top of everything else. I am out of the house probably two or three times a week. Another week in Vancouver and this time we had some news and some changes. We got some of the results from the muscle biopsy back...finally! He has been confirmed to have Mitochondrial disease for a fact now. We knew this all along but now they have the test results to back it. I'm not even going to begin to try and explain the complexities of his testing...it took me forever to wrap my brain around protiens, genomes and nuclear DNA. The long and short of it is that he does not have one of the 40+ identified types of Mito. He is his own breed...lol. He is going to be listed as a research project for funding to do more testing. So they changed his formula and adjusted his medications a bit....another month gone in a flash.

Are you kidding me? March already? We were booked for G-tube surgury on the 10th, (A tube that goes directly into the tummy, to get rid of the NG tube) but Ayzac's body had different plans. Here we sit at BCCH again because Ayzac got a viral infection of some sort and pancreatitis to top it all off! He is recovering slowly but surely and we are hoping to go home early next week. Surgury will have to wait :)

Ayzac still has quite a bit of developmental delay. He is very smart and is right on par for cognitive development but he is like a newborn to hold with little to no head control. It's hard to catch up when you can't stay out of a hospital bed for more than a few weeks.

I will try to post updates more often! Hopefully we have less illness during the summer months :)


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