I would just like to point out that I haven’t stabbed anyone today. Nor have I shouted (except once, when Amy was incessantly pulling on my pants to get my attention instead of USING HER WORDS and that, my friends, is justified shouting), or thrown any crockery, or had a tantrum.
I mean, considering the circumstances, I am being VERY CONTROLLED in the face of extreme stress.
If you’ve guessed that today is the day for Getting Shit Organised, you’d be right. Unfortunately it seems that Evie’s medical teams are all busy with other patients and emergencies and yada yada and so far, no one has returned my calls.
My twitching, it knows no bounds. Neither does Evie’s twitching, but hers is entirely different.
On top of her regular seizures, it has come to my attention that I just don’t think she can see anymore. Except for bright lights – I know she can see bright lights, they are the only thing she responds to visually.
The last time she smiled at me, properly, was a few days before we noticed her seizures. No smiles since. She doesn’t look at my face, she doesn’t track with her eyes, she doesn’t follow our movement around the house. All things that she was doing prior to the seizure activity. Now, nothing. She also doesn’t blink if you snap your fingers in her face, or flick your fingers at her eyes.
Nor did she blink when Isaac nearly poked her in the eye.
I sat down in front of her yesterday and tried to catch her gaze. It wasn’t until I spoke to her that she responded, by jumping out of her skin and looking offended.
There is something called Cortical Visual Impairment which can go hand in hand with seizures.
(And something even more terrifying that causes seizures and CVI together, along with a few other markers Evie has that we’re waiting on the test results for, but we’re not thinking about that possibility.)
I need my medical teams to call me back so that I can announce to them that Evie isn’t seeing things anymore. So that we can get things moving.
Instead I am wandering around the house, unable to settle, waiting for phone calls.
[I know my medical team is very busy with an entire ward of paediatric patients, so I’m not terribly grumpy that they haven’t called yet. I’ll ring again in a few hours and see if I can catch them them. Our main Paed (working hand in hand with the hospital) has a full list of patients this morning too, so he’s busy as well. I’m just impatient and grumpy. Also, worried.]
UPDATE: Spoke to our Paed. We’ve been told to take Evelyn back to Emergency. Wish us luck.
Comments
33 responses to “Still waiting. I haven’t stabbed anyone though, so BONUS. UPDATED***”
My heart aches for you.
LOVE LOVE LOVE my friend.
x
Hugs, I don’t know what else I can say.
This is just so heartbreaking for your family. I just so hope you get a call very soon with some plan of action for your girl.
Constantly thinking of you.
xx
It’s just awful they are keeping you waiting.
Hoping for some answers soon
Much love
You poor darlings – I really hope you get some answers soon!
I can’t even imagine how you feel right now. I wish there was something we could offer you, to help, but all we have is to listen, to send love and best wishes, to listen XX.
I don’t know what to say, other than keep strong. Blessings to you and your little baby girl, may things become clearer very soon. x
Saw your update, GOOD LUCK!
If you do end up losing your shit at anyone, I’m sure people will understand why and forgive. You’ve done well to maintain the polite, but if you lapse, please don’t beat yourself up for it. Hoping for some solid answers for you
Big hugs for you & your babe xxx
Good luck. Sending you all love and hopes for answers.
Oh sweetheart. The waiting. Much love x
Oh you poor things!!! That must be so awful for you! I have watched a lot of your progress over the last few months and you just don’t expect something like this. I have you all in my thoughts and prayers. Best of luck at emergency, Kim
I’m new here, but I am sending you so many good wishes and prayers. I can’t imagine how you are feeling. I hope you get some answers and some effective treatment very soon.
Oh, Veronica. Fuck.
Really sorry to read about Evelyn’s sight … wishing you the best of luck and the best of care from the professionals.
Good luck lovely. My heart aches every time I think of you all. I am bashing at the doors of the universe and telling it to get it’s lazy arse out of bed and give you some damn answers!! My Evie thinks your Evie is “just beautiful mummy, just like me?” and keeps blowing kisses at my screen xxxx
HOW HAVE YOU NOT POPPED? i know, i know, you can’t, it won’t help anyone, but … WOAH you deserve a bloody big medal! good luck and big hopes for answers soon. xt
This is any parents worst nightmare writ large, all good thoughts and love to you.
Makes other problems seem insignificant. Hang in there. Hope you get answers soon.
All the virtual hugs in the world won’t help but I’m sending them anyway xxx
all fingers and toes crossed
Praying for answers, for strength and for healing (and good behaviour from your two older ones!)
xx
I know I would have lost it on someone by now in your shoes…so sorry you are all going through this…hoping for answers for your little sweetie very soon…xoxoxoxo
I’m hoping and praying you get the help you need for Evie
Bloody hell! I have only recently discovered your blog. Humbled by your strength, honesty and humour. Sincerely wish you get answers and solutions to help your baby girl. Absolutely know what its like to worry when your newborn is ill. Good luck.
sending you so much tear-filled love. xoxoxoxox
Oh Veronica, I just came back from a two week holiday and catched up on all that happened and is happening. I am so sorry to read about those scary things, and I just hope that you will get an answer soon – the most positive answer possible, of course! I wish I could do more, but can only offer you thos words: sending as much hope and strength and love as I can for you and your baby girl Evie!
Fine
I know I don’t comment often, but I wanted you to know that I was here. Reading, hoping, and praying for little Evie (and the rest of your family).
WHAT??? I would take her to emergency right away, and I’m glad you are leaving! MANY prayers for you guys!!
My heart goes out to you and your family. I hope that they find out what’s wrong with her. I would be beside myself. Regardless of whether they have a ton of patients I would want the doctors working on my baby. Hearthugs! I hope she gets whatever she needs to get better soon. <3
Thoughts et soutien from France too.
It’s like a poorly written soap opera – one that should have been discontinued long ago…. where they are just searching for weird new storylines because they’ve used up every single bit of drama possible years before.
If it were a book, I would have put it down for its unbelievable storyline long ago.
It’s hard for me to imagine that this is life – this is real life for you.
I’m desperately sorry.
oh :/
🙁