Bye bye 2016!
Although I am so thankful for what it brought it was one of the hardest years we have ever lived.
Back at the beginning of the year our poor Superhero went into sensory meltdown, he did not stop crying for over 15 days and we could not figure out why. What came with it was epilepsy and seizures on a whole new scale. He went from a very happy, alert little boy to a complete seizing vegetable within a month.
By February after trying many drugs and starting with a new specialist they gave us the news that they may never be able to control Grayson’s new level of epilepsy as with many of Grayson’s issues
“it was too complex and unlike anything they had ever seen”.
The doctors were very honest with us. I will never forget them giving Ashley and I the news that they did not foresee Grayson living past the Summer with seizures so strong. They said without being able to control them they feared Grayson would have another stroke or stop breathing in his sleep.
We walked from the appointment not shocked by the news. We had spent the past couple of months watching Grayson slipping away with only hours awake each week where he was with us.
We made the decision that this news was our news and we did not want to share.
It is hard for many to understand why. But we didn’t want anything to change. We did not want to live with a death sentence. We wanted the people who truly loved him to be there because they wanted to be and we did not want people to be in our lives just because they felt he wouldn’t be here that long.
Over the following months we watched Grayson slip away. We booked in emergency surgery for a feeding tube as he lost the ability to eat.
He lost the ability to walk, spending any awake hours restricted to being able to sit and sometimes that was not even possible.
Ashley was so strong. Holding his child’s head to stop him hitting things, being like lightening when Grayson was awake making sure every time that drop seizure came he would catch his son so he didn’t bang his head for that last time.
He didn’t manage every time and a few times Grayson’s poor head would bleed and a hospital trip would happen.
As he slept at night, so deeply from medication comas and lack of strength I would listen to his breaths. Terrified to fall asleep as when I woke frightened of how I would find my son.
Grayson choked on four occasions and we nearly lost him. Addison and Deacon witnessing this. Trying to not show fear but being the most frightened I have ever been I can not explain.
All my poor babies experiencing so much pain.
Then there would be glimmers, he would wake with a smile, the seizures would be minimal if only for just 24 hours. My little boy would be there. But as quickly as that happened he was gone.
Then on June 3rd. I made that phone call to his local specialist. I cried for what felt like forever, I said this can not go on. My baby is a vegetable. What can we do ? I pleaded for help. There must be something we can do. That day he had experienced over 200 seizures and it was only 2pm. He is not living I told him. He agreed.
He said we have one last thing. One last drug. Bring him in. We will have to administer in hospital as it will be such a life changing dose.
2 hours later the syringe driver was in. Would this work ? Would we find a way to help him ?
The next 48 hours were hell. So many times we felt we made the wrong decision as his body reacted so badly to the drug. He came out in a rash head to toe. He screamed in pain non stop. Not sleeping at all for over 36 hours. He couldn’t eat. Couldn’t be touched.
But as the hours and then days went on his seizures started to retreat.
There were still seizures and bad days. But he was regaining control.
Then on July 8th he smiled so big. It was the most beautiful thing I had ever seen.
On July 10th he has his last major seizure and had a feeding tube inserted.
He has got stronger every day. We have lost another part of Grayson to epilepsy as we did back in 2012 and that will never return.
The seizures are still there and come most days. But they are manageable and my Superhero fights on.
I am forever thankful to our Doctor for trying one last thing, for hearing my cries, for looking outside the box, for suggesting an old school drug.
I am forever thankful for
and to my Superhero for fighting on. Here is to making memories in 2017!