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New thread- mass on babies brain

151 replies

eastview · 07/06/2023 20:16

Hey everyone I thought I'd start a new thread to update as I think that one is about to get cut off as it's so full. Thank you for all the well wishes and I know lots of people have been thinking of us.

They said that they don’t know if the seizures are coming from the lesion on her brain still as the seizures are coming from the back of the brain but the other side so it could just be a coincidence. The mri scan was the same as last time nothing had grown etc which is good. They’re going to do something called a PET scan on her in a few months which should give them more info. Definitely no rush to do any surgery as they're still not sure that the lesion and seizures are linked. They’re going to refer her to a ketogenic dietician and look at her meds as the priority is helping with the seizures until they can figure out if they can do surgery in the future. They’ve done genetic testing on us which will take about 6 months. They’re really impressed with her development and loved her so much. It's not gonna be straight forward but they said the seizures she has aren't dangerous and won’t cause brain damage it’s just about controlling them for now. I can't even explain how amazing this little girl has been these last few days. Not 1 single tear the whole time and was laughing and smiling the whole time. I am beyond proud of her she just takes it all in her stride and is just the happiest little girl ever. Here's a little pic with all her wires on bless her. She sat like a statue for almost an hour while they put them on her head. She's just incredible if I do say so myself X

New thread- mass on babies brain
OP posts:
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eastview · 11/05/2024 09:47

Thanks everyone my head is a bit all over the place I'm terrified and no clue how I'm supposed to hand my baby over to them. She is strong and healthy and amazing and I just pray that her recovery goes smoothly and this will all be a distant memory.

A few recent pictures of her enjoying the sunshine for those asking. X

New thread- mass on babies brain
New thread- mass on babies brain
New thread- mass on babies brain
OP posts:
ArabeIIaScott · 11/05/2024 12:34

That's entirely to be expected, OP. You will all be in the hands of experts, who will be completely understanding of how difficult it is, I'm sure.

Try and make sure you are drinking plenty of water, and eating if you can, when you can, and then just be extra gentle with yourself.

Take a day or two to let the shock settle, and then start getting practical things sorted. It will be okay. You will be okay. All will be well.

What lovely photos. Your girl is a sweetie!

SirChenjins · 11/05/2024 12:48

Lovely photos of your gorgeous girl!

Handing them over is the worst bit - I remember it well 26 years later - but the staff will be brilliant as they do this all the time. She’s in the best possible hands, although there’s nothing any of us can say at this point to stop you worrying. One step at a time 😊

YoucancallmeKAREN · 11/05/2024 21:21

She is growing so fast. We are all here holding your hand. Flowers

eastview · 26/05/2024 08:50

So I got a call 2 days ago and her surgery has been cancelled. I am absolutely heartbroken and I can't believe it. They said she is still a priority and should get it in the next few weeks but they need the equipment for a baby with a malignant tumour and the only day it's available is Wednesday which is when Delilah is in for. All of our bags are backed and I'd mentally prepared myself for this. I don't know if I can cope with another few weeks

OP posts:
ArabeIIaScott · 26/05/2024 08:53

Oh, OP. That sounds really hard. It's quite par for the course with surgeries, but that will be of little comfort!

One day at a time. Have you something mindless to do while you wait? X

Violinist64 · 26/05/2024 16:17

So sorry to hear this. Here's hoping there will be a new date very soon. You have been so strong this last year and I pray that you will be able to continue to be strong for you and lovely little Delilah ❤️

Hungrycaterpillarsmummy · 26/05/2024 16:39

Delilah will be none the wiser at least.
Sorry it got cancelled but at least it will be soon.

legosnowqueen · 26/05/2024 16:44

Oh no, that's annoying when you're all geared up. Hope you don't have to wait long.

SirChenjins · 26/05/2024 17:49

Oh OP - you have my sympathies ☹️ getting geared up for an operation only for it to be cancelled is awful, it can feel like an emotional rollercoaster. Hopefully it will go ahead soon and you can all put all this behind you. Can you plan some nice things each week so you have things to look forward to and focus on?

spiderlight · 26/05/2024 18:51

So sorry about the cancellation - it must feel like the world's worst rollercoaster at the moment. Hopefully it won't be too much longer now. Holding you and Delilah tight in my heart.

ArabeIIaScott · 29/05/2024 15:11

Thinking of you, OP, hope all's okay.

eastview · 23/06/2024 09:51

Hi everyone I thought I'd give a little update. Well actually a BIG update.

So Delilah had her surgery Tuesday. It was an over 10 hour surgery and as you can imagine the wait was absolutely horrific. Her recovery has really unsettled me. She's been in a lot of pain and vomiting but fingers crossed no more as she hasn't since yesterday afternoon. She was very withdrawn and not speaking (they told me about this but it still devastated me). Until yesterday. She decided to keep the ward up until 1am singing and saying "happy happy" "daddy where are you?" 🤣 she's a bit grumpy this morning but doing well again. And the best part NO SEIZURES yet. Usually she would have upto hundreds a DAY but she's not had so much as a flicker. I can't believe it: still early days but things are looking positive

OP posts:
Squibblenuts · 23/06/2024 09:57

Amazing news. Sending all the best for a speedy recovery.

frecklejuice · 23/06/2024 09:58

That is an amazing update! Wishing her a speedy recovery and I hope you are all home together soon 💕

KeziaOAP · 23/06/2024 09:59

So pleased to read your positive news 😀

Nottogetapenny · 23/06/2024 10:19

Thank you for your update! Amazing news, hope Delilah will soon be home as her recovery continues and never have any seizures again.
It must of been, such a worry to you and her daddy. But how amazing, you both are, your daughter is a little star ⭐️ 🥰🌸

ArabeIIaScott · 23/06/2024 10:45

OP, that's so lovely to hear. Wishing you and Delilah a wonderful, joyous recovery.

BettyBardMacDonald · 23/06/2024 11:13

That's wonderful!

Glad for you that it's over. Please keep the updates coming.

SirChenjins · 23/06/2024 11:37

Oh that’s fantastic news! You must be so relieved that it’s all over and you can all enjoy being a family without this hanging over you. Now you can focus on Delilah’s recovery and getting her home soon. Best wishes to you all SmileFlowers

WitchyBits · 23/06/2024 12:02

Brilliant news ❤️

legosnowqueen · 23/06/2024 12:39

Wonderful - best wishes to you all Flowers

HappyHolidays22 · 23/06/2024 12:50

Oh just wonderful!!! Xxx

GU24Mum · 23/06/2024 12:59

Really pleased to hear your update : I remember your first posts last year. Hope your lovely girl makes a great recovery.

Violinist64 · 23/06/2024 13:38

Wonderful news. Let's hope and pray that Delilah makes a full and swift recovery.