New thread- mass on babies brain

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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

She really does have the cheekiest facial expressions.

Happy Birthday Delilah.🎉🎉🎉

Happy birthday beautiful Delilah

Happy 1st birthday Delilah! 🎉🥳

Happy Birthday Delilah

@greenspaces4peace thank you for this. It's so good to hear of a success story and I'm so glad that surgery helped your son. I am really anxious to know the risks but I guess they wouldn't do it unless they thought it would work for her. I'm hoping that one day we can look back and it'll all just be a bad dream. X

Thank you so much everyone for the birthday wishes she had a lovely day and was very spoiled 🥰 she even cut her first tooth on her birthday bless her❤️

Gorgeous girl Happy Birthday for yesterday😀

Happy birthday! She really is gorgeous and must be one of the best dressed babies around!🎂🍰

Wow she looks gorgeous a happy year to her full of smiles and joy.

Hi everyone how are we all?

I thought I'd do a little update as we have big news. We have been offered surgery for her. They seem to think that her seizures are coming from the lesion so want to go ahead. They can't take it all (they said they'd take around 75% as taking all would be too risky as touching parts of the brain that control breathing etc). They aren't sure it'll work and have given us around a 50% chance which is disappointing but it's so rare that they just aren't sure if taking 75% will be enough to help control the seizures however we do know that meds just fine work :(. The main risks discussed were infection, bleeding etc and me and dad had already discussed beforehand that as long as there weren't risks of death or high risk of disability then we would do it. We are looking at having this by the end of the year. The thought of my baby girl having brain surgery is just breaking my heart.

While we wait she is going to be starting keto, probably in the next 2 weeks. If we see a major improvement before the surgery then I'll probably hold back on it. But atm we are desperate. The seizures are upsetting her more and more. However she is having some good days (like today) which is great. Taking her on a little caravan break tomorrow to cheer ourselves up as it's been a lot to take in.

I hope everyone is well 💕

Thank you for the update. What is keto in regard to her condition?

I can imagine the prospect of brain surgery is very daunting but remember, she won't have the trepidation and anxiety about it that we adults would. She'll be given her anesthesia and never know the difference. It sounds well worth a try even at 50/50 odds of an improvement.

So sorry that the seizures are bothering her. What else is she up to; she must be learning a lot and growing fast at this age? Try to enjoy and not worry (easy for me to say, I know).

Enjoy your break!

Thank you for the update, i think of you all often. You have a scary time coming up but i am sure Delilah will smile her way through. Enjoy your caravan break, i hope the sun shines for you x

Keto is a form of medication for seizures really it's supposed to reduce them so her consultant wants to try that in the meantime. We find it hard to plan anything as we don't know when she will be having a good/bad day so this is a last minute trip really.

She is super funny and getting so bossy always pointing at what she wants and shaking her head to things she doesn't want. I have to watch her every move now 🤣

I've popped her insta below if anyone wants to follow as I update that most days 💕

instagram.com/delilahgabriellaxo?igshid=MmIzYWVlNDQ5Yg==

Oh bless you. It's a really tricky decision to have to make, but if the seizures are upsetting her and the meds don't fully stop them I suppose you have no choice.
I'm sure the op will go well and hopefully the 75% they can get will stop them 🤞

Enjoy your holiday, you all deserve it 💐

I've just had a peek at your instagram page 🥰
When all this is over you need to get her into modelling, that cheeky little smile is gorgeous 😊

Could I ask who your consultant at GOSH is please? My DS is 15 and waiting for surgery, we’ve been told at least a year to wait.

Oh goodness - big decision! Hopefully the keto will work and you can hold off on surgery but it's good that you have options.

Thanks for sharing her Insta! I love seeing pics of her beautiful smile 💕

Huge hugs to you op, it all must be so difficult.

Enjoy your holiday 😊

Thank you everyone. I hope everyone is doing good and thanks to those who have followed her insta. We don't get out much these days so dressing up is all we have sometimes and she loves it as much as me 😄😂

I don't really have any updates, not heard anything about starting keto (still waiting for an appointment for a kidney scan which is routine when starting the diet) so I need to chase that up Monday.

She's been really struggling in the hot weather, it seems to make her seizures worse so we have just been staying in in the cool.

I'm not doing too great, thinking about making a GP appointment soon. I thought I was ok but I'm not sleeping so exhausted all of the time and I've recently noticed that my hair is falling out. I'm pretty sure it's stress related but not too sure what to do about it as it's a given that I have been and am stressed. Although I have spent almost all night lying awake crying because of my hair. Sounds stupid I know as it's just hair but I can see now it's all affecting me physically too.

@MyNameIsErinQuin sorry that it's taking so long, I'm not sure of names as there will be a few surgeons (oncology due to placement of lesion and epilepsy due to seizures). They did tell me that they prioritise babies tho so maybe that's why although I've not had a date myself either.

I hope everyone is doing well 💕

Hi OP

I’m so sorry to hear that you’re struggling. I am sure your hair loss will be stress related but my sister has experienced this in the past and it has always grown back and thickened out over time. There are vitamins and hair treatments that will help with this too. Everything feels worse when you can’t sleep so I hope you manage to get some sleep soon. Your Dr may be able to give you something as a one off temporary measure.

The heat has been so unforgiving. I actually bought a little portable air conditioning unit for DD’s bedroom. I had very low expectations but it’s fantastic!

I realise all of the above is practical advice but wanted to say too that you’re doing brilliantly. You’re going through something so traumatic and anxiety provoking and are somehow managing to keep your beautiful girl happy and well. That’s so impressive. You can’t pour from an empty jug though so do see your Doctor and get some help for you.

I think about you often and your beautiful girl and her wonderful smile. I’m so sorry you’re all going through this. Keep going OP and get some help for you. 💐💐

The hair loss on top of everything else must be so upsetting. It happened to me several years ago after severe stress and serious illness (look up telogen effluvium) but it all grew back, thicker and wavier than before). Get your iron and thyroid levels checked just in case.

I've been following your little star on insta (well, my dog has, because I was logged into his account!) and I'm holding your hand from afar.

I have been following your thread and have now followed your instagram. She is just gorgeous and you dress her wonderfully.

I just wanted to pop on and wish you luck and say that I think Keto is a type of diet - high fat, low carb that was developed for controlling epilepsy in children. It’s now quite popular for losing weight so you should be able to find lots of recipes and groups, there are even some especially for children.

Hi OP, sorry I missed your last update. I hope this month has been a bit better for you, it sounds like you’ve had an incredibly tough time of it and the waiting is almost worse than anything else.

If you do get a chance to update us on your darling girl (and post more photos of her lovely outfits of course!) that would be fantastic. Sending you lots of positive thoughts and good wishes

I’m here for the Christmas outfits 😀😀 I hope baby Delilah is thriving. Did you decide what to do in the end?

Yes, how is the little cutie!?