Firstly...
Evidently there is some crazy bogus "Policy" in place preventing children under three from having a big bed. It's crib or bust baby. And trust me...I've talked to everybody about this! I'm very persuasive too.
Secondly...
Dr. Rockstar and Dr. EEG Wizard met with us this afternoon with "The Plan".
The damage to Trevy's brain is very widespread. So widespread that it will require removal of his whole left hemisphere. Minus his motor cortex. Although they do believe there are seizures originating within his motor cortex. In the past...they would remove it. And the child would have permanent motor function loss.
Today...we have a new option. Multiple Subpial Transection (MST).
Essentially it's the slicing of his brain to interrupt the seizures ability to spread. With the goal of preserving the function.
I was hoping...SO hoping...that his motor cortex was not involved. And my heart is broken. Even though we have this nifty new option.
It's hard to really convey to anyone outside of this world. This specific world. Because on the surface it sounds selfish. Because Trevor is high functioning in many ways. But many of those high functioning ways are tied to his motor function. That's his thing. His normal thing. He can run...and clap...and walk...
And I hate taking that from him. I hate losing it. Even if they say it's only temporary.
::sigh::
But I hate these bloody seizures more. And the life they are stealing from my son.
So tomorrow the monster dies. Hopefully forever...
Evidently there is some crazy bogus "Policy" in place preventing children under three from having a big bed. It's crib or bust baby. And trust me...I've talked to everybody about this! I'm very persuasive too.
Secondly...
Dr. Rockstar and Dr. EEG Wizard met with us this afternoon with "The Plan".
The damage to Trevy's brain is very widespread. So widespread that it will require removal of his whole left hemisphere. Minus his motor cortex. Although they do believe there are seizures originating within his motor cortex. In the past...they would remove it. And the child would have permanent motor function loss.
Today...we have a new option. Multiple Subpial Transection (MST).
Essentially it's the slicing of his brain to interrupt the seizures ability to spread. With the goal of preserving the function.
I was hoping...SO hoping...that his motor cortex was not involved. And my heart is broken. Even though we have this nifty new option.
It's hard to really convey to anyone outside of this world. This specific world. Because on the surface it sounds selfish. Because Trevor is high functioning in many ways. But many of those high functioning ways are tied to his motor function. That's his thing. His normal thing. He can run...and clap...and walk...
And I hate taking that from him. I hate losing it. Even if they say it's only temporary.
::sigh::
But I hate these bloody seizures more. And the life they are stealing from my son.
So tomorrow the monster dies. Hopefully forever...
Comments
Hoping tomorrow passes quickly. Thinking of you guys constantly.
Kill the beast! Save the Trevy in distress!
I think I read too many fantasy and sci-fi novels.
We will be thinking of you all morning. Much love and prayers!!!!
I am so glad the day is finally here. Big prayers coming your way!
Marcia
We all send our bestest, bestest thoughts.
Kari
The miracle nightmare has already started. I hope you can stay on the miracle side as much as you can.
I suspect it is not possible to not have expectations, some not even verbalized. But perhaps verbailizing expectations would help. Even if you do not share them with everyone who reads here.
Praying for your family (armed and ready). Barbara
Thinking of you lots!!!!!!!!!!!
sheila
Wow, seems like there is always the unexpected and things unfolding a few more times that what you would like....I'm sorry. Praying that the seizure monster is destroyed once and for all and Trevy's brain is free to go farther than ever imagined.
Sending love, prayer, and gigando hugs,
Jody
And about the bed...well, I don't really want to make light of a bad situation...BUT...if I could draw a cartoon here it would be this: Danielle pushing a large package on wheels through the ward, at mach speed, the package wrapped in plain brown paper, with a big homemade handle fashioned on top. "Excuse me, pardon me, I've got a present for my son. Step aside, please." And on the side would be one of two things written: "International House" or "Rent-A-Center" or maybe even just the hospital's name.
Thank you for the posts and pictures. They mean so much to us because Trevor and all his family mean so much. We are there in spirit.
CB
You are so right that those of us outside dont know what you are going through and the heart break we feel for you is so small compared to what they all feel for you because for some of them its reliving memories that they have already experienced and for some it is what they are waiting to find out. All i know to do is to pray for you and for them. I pray God will give you strength and He will give all your IS family the words to say to you that will comfort you and Jonathan.
Praying so much for tomorrow and that the monster is dead forever.
Love you bunches!
Connie
With the MST...what kind of therapy/timeline will Trevy be under in regards to rebuilding motor function?
We will continue to hold Trevy in our hearts as he battles through this and says "Get Lost!" to the seizures forever....and here's hoping the powers that be give in and the big bed appears...after all there are bed rails and 24 hr supervision as well as the benefits of feeling his parents hold him...I'm singin' to the choir here, aren't I?!?
Many hugs,
Margo
Love and hugs and prayers to you and your sweet boy. God will be in that operating room tomorrow, watching over Trevy.
Love Karen
I'm sorry.
I'm stumped on words because I have no idea how you must feel.
Wanting the best case scenario for Trevor could never make you selfish. He's your precious, fighting boy. He's been faced with far more than any child should ever endure -so yeah, this news sucks because it only adds another obstacle to the battle. But, what an easier battle it will be for him to fight without the constant roar of the monster.
Love and hugs and many prayers to all of you!