And in short, because I’m exhausted mentally and physically:
– Her test results are back and are clear for metabolic diseases. Yay, my baby does not have something fatal!
– We have No Fucking Idea what is causing her seizures.
– We have to wait and see if they affect her development before we trial a new anti-convulsant. Phenobarbital is doing nothing, but they’re not keen to try anything else for a little while yet.
– She can come off the pyridoxine, because her B6 levels are fine and the pyridoxine hasn’t helped. Thank goodness for that, she hates taking it.
– We have no idea what is going to happen next, or how things will manifest themselves. Will she develop normally? Will the seizures magically stop? Will she be developmentally delayed? Can she see properly? It’s like super fucked up lotto for your kid!
– Our Paediatrician and the team at RHH continue to be amazing and supportive. Which is nice, when they’re telling you things you don’t want to hear, like “We’ll just have to wait and see” and “We don’t know how this is going to pan out.”
– I am so mentally and physically exhausted that I think I require a week in bed.
Great news on the one hand – thank goodness she’s clear for metabolic disease – but still incredibly frustrating. It must be so hard not knowing. This is a time you should be savouring and enjoying and all you can do is wait and watch and worry (no matter how much you tell yourself there’s nothing more you can do). I really hope the seizures just stop one day, or start to phase out soon….In the meantime, are you able to have that week in bed?? Can grandparents take the kids while you and your partner just focus on Evelyn and resting while she sleeps? (Sorry, I’m new to your blog and I don’t know your situation and don’t like to sound nosy asking these questions but hot-damn do you need a rest!!!)
It’s a start, at least. I’m so glad that the first definitive answer has been extremely good news. We’re still crossing everything here for you:)
Its a start, one thing to cross off the list.
*hugs*
I am so glad the staff are there for you as much as they can be.I remember when I worked at a childrens hospital and how heartbreaking it was for all when we were not able to give answers.
I send you love and support and much hope for the best.xx
I cried with happiness at the first part, enough to give you hope and strength to go on with. Love to all of you xx
Thank God for the metabolic results. That must be a serious weight off your mind.
All the good wishes in the world for you all as you continue on this journey. May it end gently, and soon.
I’m so glad that there is no metabolic disease to contend with.
I’m sorry there are no answers for Evelyn’s seizures.
Thinking of you
I’ve just caught up on the last week or two. The last post I read was the one right before you mentioned the vision problems. I don’t mind telling you, Veronica – I feel sick to my stomach at what I’ve read.
I don’t know how you’re forming coherent words, let alone blog posts. I don’t know how you manage to function and not scream at everyone. Doctors. Everyone. Fix this. Fix her. Somebody fix it.
I’m so sorry. I’m relieved about the metabolic diseases, but to be honest, I don’t know much about them. So it all still feels scary and to call it frustrating (to you guys) is like calling the Arctic Circle brisk in winter.
Massive hugs.
Always thinking of you
Hugs Veronica, I don’t know how you are staying so strong, hopefully it will all be revealed soon and that there will be no long term effects, you guys deserve a break. xxx
Some good news about metabolic diseases not so good they have no other answers.
So sorry you’re going through all of this. 🙁 Hope you get some answers soon. {{{HUGS}}}
SO relieved about the metabolic diseases, actually SO doesn’t quite cover it 🙂 But is there anything more frustrating than the wait and see approach? Sending light and love and hugs as always.
As a start, it’s a pretty damn good one.
But the not knowing is hard, very hard. I am thinking about all of you.
That’s terrible they can’t give you any answers… I can’t even imagine what’s it like to just “wait and see” when you can clearly see your baby is not well! I really hope you find out what is happening soon and that little Evie makes a full recovery! Thinking of you and your family!
Yay for good news on that result! I hope the other open questions will be answered with good news, too! It’s great that she can get off those two meds, and I hope you all get a little bit of quiet and Evie gets better! Lots of love!
Hooray for nothing fatal, but sorry there are no answers for anything else.
I’m going to start hoping the seizures stop on their own real soon and don’t affect Evelyn’s sight or development in any other way.
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