Finally have the EEG results through its been confirmed she has been having seizures and she has abnormal brain activity she as abnormally slow brain waves caused by the cyst blocking the normal brain activity. they have prescribed her seizure meds now so this should prevent further seizures for now They have now confirmed it’s the cyst causing it not epilepsy so now it’s to neurology in Leeds. She’s needs surgery ASAP!!
Poor baby is so tried after today with meds we’re getting discharged for the night so she can get some rest before it all starts again in Leeds. So we’re just waiting on discharge notes. We got open access back to York should it kick off tonight. But fingers crossed Ada can get a good nights sleep in her own bed before the next round of hell starts Thursday.
We just got back from the EEG. Poor baby. Even more scary for her because she can’t see what’s going on breaks my heart hearing her cry like that. Hate holding her through such things. Feel like she’s going to hate me. Back on the ward having some time out while we wait on the results.
Not how I expected to spend Valentine’s but least I’m with the ones I love
Been a long long day of waiting today! We got a lovely little visit from Grampa Lee Millard today which always brightens the place.
The CT results have come back. The cyst appears to be the same size as Christmas which of course is good news! We will know more come the MRI over in Leeds on Thursday.
The soft spot on the top of her head has swelled over the last 24hrs we don’t know why, usually is linked to increased pressure in the brain but we haven’t got any evidence of that yet so under monitoring.
We believe she had a mini /start of another seizure in a sensory room today. So we are still monitoring her for seizure activity
The Opthermologist came to see her and checked her optic nerves which was stressful as hell. As you can imagine looking in the back of a 7 month old babies eyes is rather difficult. But currently they seem ok. So again positive news, means no more damage to what eye sight she does have over the weekend and means no additional pressure on her brain.
Sad news Is Drew Millard hasn’t been allowed to stay with me tonight because of hospital policy. So here I am awaiting my beloved Drew’s return in the morning am sure he’s enjoying a star fish mode sleep at home while I’m on a shitty camp bed (jealous much ).
While am sat here next to Ada sleeping I just want to thank every single person who’s taken the time to share, donate and participate in supporting Ada. Over £1k has been raised in less than 24hrs! I can’t stress how much weight that takes off me and Drew. Should Absolute worst case scenario happen and we have to go get a second opinion on Thursday least we know we have the capability to do that now..
Leeds LGI don’t provide food etc and with Drew not being allowed to stay in the hospital it helps with all that stuff too. It helps with everything. Unfortunately money talks and money gives options. It’s not a situation I ever imagined being in. Nor would I want to. But we are and we’re not in a position to say no to help.
Thank you so much Charlie Mandley for setting it up. it’s not something that was on my mind at the time but on reflection it’s already taken so much strain off. I know times are hard financially for everyone right now so even if you can’t donate please share, because someone you know just might be able to help Ada. If not I understand. It’s about my baby right now. I just want her to come out of this ok. We’re scared parents and we are just grateful for all the emotional support.
Thanks for all the love everyone your helping me mentally more than you know xxxx
So we’re still in hospital doesn’t look like we’re going anywhere any time soon. They want to monitor and see how the next day or so goes.
They can’t give Ada any meds for the seizures until she has one here so just having to wait it out.
They think she had a Tonic seizure last night
She’s just had a CT scan they want to see if something has changed any additional pressure from the cyst etc so just waiting on the results of that then she’s having a ECG next.
Still will be heading to Leeds for MRI and meeting with the neurosurgeon. so just a case of waiting on results and being their for Ada should any more seizures happen.
So looks like we shall be spending half term in hospital
All very scary. Thanks for the support everyone it’s nice to have a safe space to vent it out it’s all quite a lot to cope with xxx
You little lady are seriously trying to worry me to death! Just sits there smiling like it’s all fine now.
Ada had her first seizure last night
we’re still in hospital, waiting on a specialist. Poor baby girl. Hope surgery is coming for her soon. Never wanted to see her in pain why is life so cruel!
It’s really hard knowing how to start this post but with my maternity leave coming to an end and me having to face the world this week I feel it’s time to open up about what’s been happening over the last few months.
The week before Christmas our world got flipped upside down. Over a period of time me, Drew and close family started to have growing concerns about our little Ada. She reached 5 months old and had yet to give anyone direct eye contact has constant wondering eyes and she wasn’t reaching certain milestones like rolling and lifting her head up reaching out for objects. We went from an eye appointment at the hospital expecting her to need a patch or glasses to quickly discovering far worse was wrong. The Opthermologist couldn’t find anything directly wrong with the optics of Ada’s eyes at that time but with her symptoms he had concerns about the pressure within her brain. We got sent for a CT scan that day, to find out that our baby girl has a very large arachnoid cyst in her brain. Everything suddenly got very heavy from then on. We were blue Lighted from York to LGI Leeds to their neurology department for what York thought would be emergency brain surgery that day. Never in my life have we ever felt so scared and shocked also so broken. I spent the whole time clinging onto Drew just praying all was going to turn ok. We get to Leeds and Ada gets sent for an MRI, which was traumatic in itself for us. we find out that this cyst has grown and grown within her brain over time causing her brain damage, it’s blocking the signals that her eyes send to her brain to see resulting in her being blind other than being able to see Light. After lots of monitoring in Leeds and talks with the neurosurgeon they believed that sending Ada home for Christmas with the family was the best course of action, and to return in the new year, she’s had constant monitoring by multiple specialists Since Christmas. our life has been constant appointments constant worry anxiety and stress.
We have now been told that even with surgery Ada only has a 1% chance of ever regaining her vision due to the damage that has been done to her brain. So it’s time to face the music and accept that our baby girl is now registered as severely sighted/blind and she’s going to need all the support we can give her.
The future is unknown the cyst is causing lots of other cognitive issues she’s started having reduced movement on one side of her body which is a more recent development since Christmas all due to the cyst blocking signals to her brain.
On the 16th of this month, we are back in LGI for another MRI, and we have another meeting with the neurosurgeon to decide how to go about removing the cyst if they can.We have been told to be prepared,
The risks are high and at some point, Ada is going to have no choice but to have the surgery as to when that will be we just don’t know at the moment.
Thankfully Ada is currently in no pain, she’s such a happy beautiful funny little thing with her own little daft personality full of smiles and love for food throughout all this she’s always smiled and giggled she’s none the wiser to what is going on. She’s just used to life in her little happy world.
On our side we are trying to remain positive for the girls and provide both of them with as close to normal going with all this going on as what we can. with the support of Ada’s visual impairment support worker health visiting team and hospital staff and family/friends etc. we just have to remain positive and pray for a brighter looking future.
So, if you’ve seen me or Drew wondering around like an utter zombies, acting vacant or I burst into tears on you which has happened a lot recently to lots of people then this is why. We’re doing our best it’s all we can do right now.
We just felt like it was the right time to open up face the music and take the daunting pressure of explaining it to everyone of our chest. I just simply can’t talk about it without crying.
Long as she’s happy, smiling and not in any pain that’s our motto right now.
Time to be strong and fight for our Girl
We made need some help if anyone knows of anyone who works within private medical, sonography or neurology / paediatrics and has any contacts retired or active who we could speak to privately we would really appreciate it.
They have now confirmed it’s the cyst causing it not epilepsy so now it’s to neurology in Leeds. She’s needs surgery ASAP!!
breaks my heart hearing her cry like that. Hate holding her through such things. Feel like she’s going to hate me. Back on the ward having some time out while we wait on the results.
why is life so cruel!
Ada's Journey 