In the mail on Friday we received an appointment to see the consultant opthamologist at the hospital later this week. Admittedly, this was well timed, as we’re getting increasingly concerned about Evie’s vision, but also slightly strange, because as far as we knew, her eyes were structurally fine and our Paed team hadn’t requested for us to have her eyes checked again.
I rang them, and the registrar who had originally seen Evie wanted his boss to check her over as well. Which, great – only, is he doing this to cover his own arse? Or did he maybe see something and not want to sign off on it himself?
We’ll probably never know. In any case, it works in our favour and Evie is being seen by the head of opthamology this week, when we’ll dump all our issues on their lap. Evie’s vision is sporadic, at best. We don’t know if the seizures are interfering with her visual processing, or if there is something else going on that is causing the seizures and visual problems hand in hand.
We were pretty sure that her eyes were structurally fine, but I guess we can’t be 100% certain if the registrar himself isn’t.
She’s still not interested in our faces, and while she smiles occasionally, it’s at our voices. She can track and follow – sort of – her eye movements are incredibly jerky (I think that’s age normal though), but it’s like she’s looking 6 inches above our heads or to the side in order to “see” us. There is never any eye contact, and she only appears to have peripheral vision. And the standard things, like she doesn’t blink at things moving near her face, not even when Isaac nearly poked her in the eye, or when I click my fingers at her eyes.
If we add that to her sporadic blink reflexes (she can’t seem to concentrate on both seeing and sucking, so if you give her a dummy to suck, she rarely blinks at lights shone at her eyes) and her complete lack of interest in anything visually, then I think we’ve got some big issues going on here.
I guess the main questions are going to be: How visually impaired is our baby currently? Is it treatable? Reversible? What is causing it? Will she grow out of it?
I predict that the answers to all of these questions will be “We don’t know” and “We’ll have to wait and see.”
Heh. I just have so much faith in the system, don’t I?
She’s having seizures as I type this, in her pram next to me. Yesterday was a bad day for them – she went all morning without any and inside I was cheering, and then she seized pretty constantly all afternoon. Twitching and eye rolling and unresponsive. She’d come out of them long enough to scrunch herself up and grumble about it, before slipping into more. At 11pm last night she finally stopped long enough for us all to fall asleep, before waking up at 2am and starting the process again.
Eventually I gave up on sleeping and just sat up and held her until they eased around 5.30am.
It wasn’t my idea of fun, nor was she happy about events.
Through all this, I am thankful for your support. Yes, YOU. For everyone who has reached out to say that this sucks, that they’re thinking of us, that they’re holding Evie in their thoughts and prayers. It’s saving my sanity and I need you to know that.
So, thank you.
Comments
40 responses to “On visual development, or a lack thereof. And seizures. Still with the seizures.”
Can’t wait to hear the opthalmologist’s opinion. I hope that her outdoor lull in seizures points to more of the same to come, but it’s just so hard to know, I’d imagine. We’re still with you:)
Oh little Evie, you’re making the whole of the interwebz worried sick. I’m hoping it’s more than a wait and see at the appointment x
You’re definitely in my thoughts Veronica. Hoping you can get some answers from this latest appointment. Sending strength and peace your way xx
Yes you are in our thoughts and our prayers.Only wish we could do more hon.xx
You are in my thoughts so much of the time. Hoping you get some answers soon x
I really really hope that you get a more detailed answer (and, above all, the most positive one possible!) at the appointment. I am thinking of you and Evie and the rest of the family a lot, and I only wish I could do some more.
Look at that face, she is such a darling sweet thing.
I am constantly thinking of you guys.
I really hope they figure something out soon for your sweet girl
Hopefully you will get some much-needed answers at the upcoming appointment.
Sending big HUGS to both you and your adorable little girl.
I’m thinking of you too. Hope you get some answers SOON!
Xxxxxxxxxxx
I’m not always commenting, but I am always thinking about Evie and your family. I hope she gets whatever it is she needs although I think the most important thing is always cuddles from Mum and it sounds likes she has plenty of those. xo.
Oh darling, I just wish there was something we could all do to help. Where’s that magic bloody wand when you need it??
Thinking about you all constantly. Lots of love, sweetheart. xxxx
Thank you for saying that, Veronica, because we all feel so bloody helpless, and I know that we all wish we could do something helpful for you.
I’m so sorry and frustrated that there are no answers yet, but I guess the good news is, there’s always hope. And GOD, how we are hoping.
XX
Hopefully the registrar might have an inkling of what is going on but just wants his boss to confirm before he commits. I hope you and beautiful Evie get some answers soon. Hugs for you and your family.
Evie is like a member of my extended family now, I have to keep checking in to see how she is going. Fingers crossed for the appointment!
Hoping they find something sounds awful, but I hope they find some cause for the sporadic vision, something that can be treated and cured.
From one mom to another…across the world…you have my love and hugs and prayers. I cannot fathom what you are going through… you have more courage, strength, and patience than I could ever muster but then you HAVE to, right? Evie is simply gorgeous and I pray they are able to give you some answers soon.
Such a gorgeous baby, she looks SOtired in that pic. Every time I see a new post I click straight to it hoping you’ve got some answers. I hope you get some on Thursday x
I’m still here and thinking of you and Evie, and sending positive energy and blessings from the other side of the world. Worrying about a sick baby is the scariest feeling. I’m hoping October will bring answers and better news, better health.
I’ve been reading and quietly hoping for the best from the sidelines. I haven’t been through anything like this so i don’t quite know what to say except I’m wishing you all strength and little Evie the best of health.
((hugs)) thinking about you all constantly.
Hope this new dude can actually give you an answer this week
When Emperor was little, he didn’t use one leg and dragged it about when he crawled. The doctor said well we just have to wait and see if he will ever be able to walk. Ugh, seriously? That attitude drives me NUTS. At least it’s honest though, if they don’t really know what is going on until symptoms develop/go away later. I would hate for them to do useless tests on your punkin because we’ve been through enough of that.
I’m always checking for an Evie update. You know I’ll keep praying, thinking good thoughts, sending good vibes, however you want to put that. I’m always reading and happy to receive an update, even if the update is “everything is still the same.”
I am imagining it is spring and planting time and how do you do it all??
I’m keeping you both in my thoughts, and anxiously awaiting any news which might benefit you. I haven’t commented, but I’m quietly rooting for you, from halfway across the world.
I really hope you get answers soon.
Love, and many hugs,
BubbleGirl
Wow V, what a stressful time. I hope you get answers and treatment soon. Evelyn is just gorgeous. What can I do to help you?
A little more reaching out and positive vibes headed your way, I hope your beautiful little girl has some answers soon, and you are able to get some rest
Here’s hoping you get some answers very soon! Thinking of you and your family at this awful, stressful time!
Wishing and hoping all turns out ok!!! Sending you huge amounts of strength….. How is the rest of the family holding up?
I wish we could do more and I hope the consultant opthamologist has some answers for you.
((hugs)) She is one beautiful baby. And you are one amazing mom.
As was said above, I don’t always comment, but I am always thinking of you , Evie and the rest of your family. Big hugs!
Oh Veronica. Definitely thinking of you and your family…
Evie is absolutely adorable.
Ronnie xo
Thank you, always, for taking the time to share your updates with us Veronica. Love, always to you and yours.
Hi Veronica! My name is Cynthia and I only recently started reading your blog. I just want to say that my heat goes out to you and little Evie. I’m a mom too, and while I can only imagine what you’re going through, I know the kind of love that only us moms can give to our children. I pray that everything will work out well, and I’d like to thank you for sharing your journey with us. You are such a strong woman and I salute you!
Gosh you must all be simply exhausted. Newborn parenting with young children is hard enough, add in everything else and I just want to fly over and babysit while you sleep.
She is so gorgeous, Veronica.
Every time I hold my 6 month old grand daughter, I think of your beautiful little Evelyn and say a little prayer for her & you & your family. Hang in there little momma, hang in there. Your strength and persistence is amazing considering all that you are having to endure.
Oh lovely V, what a gorgeous girl she is. Continuing to send love and prayers from afar xx
Veronica – I have been very much absent from doing the blog rounds for a while, so last update I read you had just had Evelyn – I am so devastated for you reading your updates. The not knowing is horrible for you. I do hope that there is a simple and fixable reason for your little girl to have such episodes.
Am just catching up on my favorite blogs. So sorry to hear of your troubles with your baby. I’ll say extra prayers for you.
She is so, so, so beautiful. Thinking of you all the time. A-M xx