Bye Bye 2016, No More Death Sentence

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. 


Seizures came in the hundreds every day. We shared glimmers of this online. Some days I could do nothing but sob as my little boy suffered so badly. 

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. 

Within days he started to eat again. Look how skinny he had become over the past 6 months ….

But he was sitting in the sun, eyes open, with a glimmer of a smile. 

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
PHENYTOIN 

and to my Superhero for fighting on. Here is to making memories in 2017!

About Innocent Charms Chats

Kara Janelle, Plus Size Blogging Mama. Vintage Lover, Interiors Obsessed, Chair Crazed, Collector of Much remembering to Smile as it is the 2nd best thing you can do with your mouth.

  • Emma Chanagasubbay

    Such a tough year for you all but I’m sure you have come through it stronger people with high hopes for a better year in 2017 as you all deserve it! Xxx

  • Lucy

    A hell of a year of a year for you. And I totally understand you keeping so much of it private, but I’m so sorry it was as awful as it was. That little boy of yours is such a trooper, such a fighter, such a superhero. And he gets it from him mummy and daddy. x

  • Old Fashioned Susie

    What a transformation of a Year. I hope his light continues to get brighter every day xxxx

  • Sabina Green

    I just love the latest pic of Grayson, he has the most beautiful smile. He is a true superhero and a fighter. Here’s to continued progress in 2017 xxx

  • DadvWorld

    Brought a tear to my eye reading this. You are incredible parents and Grayson is an incredible child! I can’t imagine how difficult it is to go through this experience. You’re very strong to be able to share this also in the hope you can spread a message a hope, amazing people!

  • Littlejennie

    I was aware there were highs and lows throughout the year, but not the extremes. Sorry for that. You had your reasons, but do know if you shout and you need us – we will be there. Not fleetingly either. I have seen Grayson smiling so much more of late, being a more present part of the family and interacting with his siblings. And that makes me so happy. Warms my heart. They really are the three muskateers and I hope 2017 brings them many adventres together. And that you can enjoy them all. Sending love to you all. And especially Grayson xxx

  • Look at your little man! I am so glad he has come so far from where he was. Sending you so much love! Hoping 2017 is better for him.

  • Sonia

    Kara I am so sorry I have read this post at least 5 times since you posted it and just didn’t have the words to write! I am so so sorry to hear what you all had to go through last year and I am just so glad to hear that they took a chance and gave Grayson those drugs! I so wish I knew you all in real life, I so wish I could be there for you all every day… to help you and to support you. I so wish I knew Grayson, I see his photos online and feel so much love for him and I just wish I knew him. I desperately hope that 2017 is an amazing year for you all and Grayson continues to be the superhero that he is!

  • I am so sorry lovley. I just wish so much I was with you all. I hope that 2017 is your year for some respite from all the illness, mishaps and worry you’ve had to all go through. I love this wee dude so much and all of you. He is a true inspiration to us all. Sending you my love, always xx

  • Pingback: Please Help Me Help Grayson! | This Mummy Loves...()