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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:
Thread gallery
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Sweetpea1532 · 02/12/2023 15:52

@eastview pray all is well for your little family Flowers

ChoupetteTheCat · 02/12/2023 16:06

How is the little sweetie?

PsychologyMother · 05/03/2024 20:34

This reply has been deleted

This has been deleted by MNHQ for breaking our Talk Guidelines.

frecklejuice · 14/04/2024 19:27

@eastview just wondering how the beautiful Delilah is and hope everything is ok? x

eastview · 14/04/2024 20:47

Hi everyone apologies for the silence, I got logged out on my app but have just managed to log back in on the site as I had an email notification! No updates really things are much the same as they were. Still no date for surgery which is annoying but I'm also dreading getting a date as it makes it real. We did try the ketogenic diet which didn't seem to help, although we didn't try it for that long as she was absolutely refusing food even water at one point to I insisted we stop. Food is something she enjoys a lot and it seemed very cruel to take that away too especially when it didn't seem to make a difference. She's still not walking but talking LOTS, she's so funny her little personality is the best. Nobody seems to be concerned with her lack of walking although she will be 2 in July. I took her to a private physio and even they said she just needs more time so fingers crossed. Here's some updated pics. Thank you to everyone who still thinks of us it's so appreciated xx

New thread- mass on babies brain
New thread- mass on babies brain
New thread- mass on babies brain
OP posts:
ThisWomansWorkNeverEnds · 14/04/2024 20:53

Aww she is so beautiful! Thanks for updating x

eastview · 14/04/2024 20:55

For someone down below who asked for Christmas outfits. lol 😃😂

New thread- mass on babies brain
New thread- mass on babies brain
New thread- mass on babies brain
OP posts:
IthinkIsawahairbrushbackthere · 14/04/2024 21:03

She is so beautiful and looks so happy. I really love the way you dress her.

YoucancallmeKAREN · 14/04/2024 21:13

Oh my, look how much she as grown, wow. So glad you have updated, i think of the gorgeous Delilah often, her smile is so infectious. I think you are right to let her have whatever she wants to eat. Please keep us updated and give Delilah hugs from all her Mumsnet Aunties.

PolliFlinders · 14/04/2024 23:06

She has grown so much and is so beautiful x

ButterflyKu · 14/04/2024 23:11

You dress her so nicely! I love the dressing up for the themes that you’ve done, it’s so lovely to see. Thanks for updating and I wish you all the best xxx

Nottogetapenny · 15/04/2024 10:46

Thank you for your update, of your amazing little daughter. Hope you hear something soon, and everything goes well. 🌸

spiderlight · 15/04/2024 22:45

Adorable photos, as usual ❤️

rainbowstardrops · 16/04/2024 09:21

Wow, she's grown so much! Still beautiful and smiley!

coxesorangepippin · 19/04/2024 03:05

What an absolute cutie pie! Omg she has changed so much.

I remember you from your other thread

Hopefully you'll hear something soon.. how is she doing generally? She looks great 🙂

eastview · 10/05/2024 20:38

Hi everyone.

The update we have all been waiting for. Got the call yesterday to ask us to take her down to London on the 28th for surgery on the 29th of this month. I am in total shock and honestly thought we would have more notice than this. I'm panicking and terrified and keep asking myself if I'm doing the right thing. I don't know how I'll get through it

OP posts:
ArabeIIaScott · 10/05/2024 20:50

One moment at a time, OP. Flowers

HappyHolidays22 · 10/05/2024 20:57

Praying for you and your family OP. Like PP said, one moment at a time.

SirChenjins · 10/05/2024 22:02

You’ve had a huge amount thrown at you just a few hours ago and it’s OK to feel terrified. Give it a few days to sink in - you can do this, just take it one moment at a time as @ArabeIIaScott says. Sending you hope, strength and courage Flowers

Nottogetapenny · 10/05/2024 23:10

Thank you for your update.
You will be overwhelmed, getting the call. It’s the call, you have been expecting but it still makes it more ‘real’ when it comes.
Take each day as it comes from now till you go to the hospital, try not to think about it too much!
Also if they had give you more notice, it would be more time, for you to worry.
You are doing the right thing for your daughter. You can do this!
Hopefully, everything will go so well. It is positive. Your lovely little daughter, will benefit so much from the surgery.
Sending strength and hope, to you and your dear daughter. 🌸😘

Sweetpea1532 · 10/05/2024 23:21

Dear@eastview I pray that God will comfort you and give you peace about Delilah's surgery. She's a brilliant little girl and a bright star with a tough spirit that will carry her through this difficult time. You and she have got this!❤️

Emelene · 10/05/2024 23:34

All the best OP. One hour and day at a time. Your daughter is beautiful and it sounds like the surgery could transform her life… be kind to yourself in this waiting period xxxx

legosnowqueen · 10/05/2024 23:49

Sending lots of love, hope everything goes smoothly. Your photos are great - such a gorgeous girl!

TrtseHkpr · 11/05/2024 00:10

She's adorable! Hope everything goes smoothly, hugs to you both

BettyBardMacDonald · 11/05/2024 01:48

Great to hear from you!

She is in good hands. Will be thinking of you.

Can we see a new picture soon? I imagine she's enjoying springtime.