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Tag Archives: icu

Hero Diaries Week 8

Posted on March 5, 2018 by Spider-Ede Leave a comment

This week Edie has been in ICU all week.

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Bake 4 Edie
Christmas Craft Fair
Christmas Party

(More info to follow!)

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The Spider-Ede Appeal – DIPG Awareness

The Spider-Ede Appeal – DIPG Awareness

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Update – 21st October
October 21, 2018
Update – October 18, 2018 at 10:11PM
October 18, 2018
Update – October 17, 2018 at 08:56PM
October 17, 2018
Update – October 13, 2018 at 07:55PM
October 13, 2018
Happy Birthday Edie!
October 13, 2018

Running for Edie
January 3, 2018
Buy a Spider-Ede Bracelet
December 22, 2017
New YouTube Channel
January 2, 2018
Spider-Ede Appeal Charity Evening at the Gladstone Theatre
March 29, 2018
The Spider-Ede Sunset Cruise
May 27, 2018

Final Call for Spider-Ede’s Ball Tickets | The Spider-Ede Appeal on Spider-Ede’s Birthday Ball
Postponed: Greg’s Sponsored Climb | The Spider-Ede Appeal on Heroic Endeavours
BEZ on Spider-Ede Rocks!
Pak H Chan on The Spider-Ede Sunset Cruise
DIPG Awareness Day – 17th May | The Spider-Ede Appeal on Bake 4 Edie – DIPG Awareness

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Upcoming Events

Scouse 5k October 28, 2018 at 9:00 am – 12:00 pm St. George's Hall, Liverpool Ran by Steve Copeland and Shaun Bretland https://www.merseyraces.co.uk/echo-scouse-5k.html

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This weekend it felt better than we could ever have imagined to get Niamh an Len back here with us.💓 Auntie Kirsty is a huge help here as much as she has been back home all of these months.🙌 We got the loveliest surprise on Saturday night. Nanny Haze & Grandad Crisps followed the children and Auntie Kirsty here! ❤️❤️ So we have more time to be able to spend time with all 3 of our children ❤️😍 We are so thankful to have the close family support that we can always rely on!🙌🙌 Edie is still doing ok, her condition is stable. Our sleeping beauty has always needed so much rest 😴. We think she’s enjoying all of the extra attention though😘😘 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

Not so long, but overdue..... Sorry everyone. We have had a really crazy week. But we know how worried you have all been. Unfortunately, we didn’t get the results we hoped and prayed so hard for from the EEG. It showed very little brain activity 💔💔💔 This hit us hard, and not even a week after we had been organising her birthday ball we began to make funeral arrangements for our 4 year old daughter. Then she gave us hope, Her oxygen saturation had dropped and Doctors explained it will probably continue to drop and not come back up, they told us her heart would then slow and her body begin to shut down completely. Well, her oxygen saturation came back up that night and hasn’t dropped since 🙏🙏🙏🙏 We will continue to wait and let Edie take us the direction she needs to go. She is simply on ventilation, medication for pain and inflammation and natural supplements. Better news is that today Auntie Kirsty arrived in Monterrey with WonderNiamh and IronLen. They have certainly raised spirits all round and today our hearts are a little fuller again ❤️❤️ 🤞🤞🙏🙏Come on Ede 🙏🙏🤞🤞 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

Ok everyone, we need your help. Edie will go for an EEG in the next hours. Due to the sudden lack of physical response the Doctors will carry out a thorough test of neural activity. 🙏🤞 We need you to please put your all into Edie, ask whichever greater force you can. Ask that Edie shows us what to do next. We are really lost right now in between complete hope for her to recover and that we want to be at peace with our decisions. This is from one of our incredible supporters, a comment that yesterday stood out to me: ⬇️⬇️⬇️ “Thoughts become things! Everyone please think/pray/meditate and focus on Edie’s recovery! Positive vibes all round!” ⬆️⬆️⬆️ And so we ask only this of you tonight 🙏🙏🤞🤞

A picture speaks a thousand words. I have debated putting this photo up. Not because of how I look, that is so far from my concerns. But for fear people will shy away from seeing the real pain. Yesterday Edie was doing AMAZING, almost off ventilation and taking so many breaths for herself. All of a sudden in the afternoon she started to breathe irregularly, we alerted the medics. The ventilator was turned up and she was given a check over. She had become limp and unresponsive. The Doctors took her for a CT scan, the initial thought was that there may be a bleed on the brain. I never thought I’d say “unfortunately there is no bleed on the brain” The only visible culprit is the Tumour Has it taken another function from our baby?? We just have to wait, there has still been no improvement. We pray for a miracle 🙏🙏🙏 So why did I take this photo? We need you to see the reality of this, the raw hurt it causes. On the exterior we know we look strong. But when nobody is looking, sometimes not even our family, this is the time our worries creep in and we crumble. All of the questions what? why? If? Looking back at the photo is so strange with the “happy” birthday decorations in the background. Just another reminder of how quickly things can change. Please send Edie all of your prayers and positivity. Only she can step up her game right now and push back. She has done it before! 🙏🙏🤞🤞 We believe in her and we believe in God 🙏 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

💃🏽The Spider-Ede Birthday Ball🕺🏽 Another huge thank you to everyone that attended the evening and made Edie’s 4th Birthday so special 🎈 Not only did we all really enjoy the evening, after all the costs and outgoings we have counted up the total of what was raised towards Edie's treatment. 🌟🌟🌟An amazing £8153!!!🌟🌟🌟 We again thank all of our suppliers and event organisers who made the ball so special❤️ Here are some photos from the evening .. look out for the full album later today. ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

Today we will be filling the day with Edie’s favourites Story books, “Dirty Bertie” 🙈 and “We’re going on a Bear Hunt” Favourite movies, “Beethoven” and “Home Alone” The wonderful nurse in with Edie today hand made a birthday sign for the wall! Friends have visited and we will see more through the day!🎉🎁🎈 This is an extra special day! Our warrior is 4! And like most birthdays when she asks “am I like Niamh now?” we have already explained to her “it was Niamh’s birthday last month so she is 5” 😍😍 forever chasing her sister!! Thank you all for your wonderful love-filled messages, we have showered her with love and will do all day. Last nights birthday ball was amazing, we looked through photos and watched videos, playing them to Edie. 🎉🎉🎉🎉🎉🎉🎉 A day of positivity, complete positivity! Happy Birthday Baby Girl! 🎉🎉🎉🎉🎉🎉🎉 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

❤️🕷SPIDER-EDE’S BIRTHDAY BALL 🕷💙 It’s tonight!! We are loving scrolling through all of our newsfeeds, seeing everyone’s preparations for the biggest celebration of the year!! 💅💄💁💃🏻🕺🏻 Edie will turn 4 tomorrow and tonight her home town celebrates in style! 🎉🎉🎉4️⃣🎉🎉🎉 We look forward to see all of your photographs and video footage of the evening!! 📷 🍾 🥂 ❤️🕷💙 JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness

“It’s ok not to be ok” “Talk about your feelings” Anyone that knows Wonder-Niamh or has even met her just once, she is very shy. On our FaceTime today Niamh told us for Mental Health Awareness they had a worry monster in school and people put their worries inside. She said she didn’t put hers in when it came round but that later on she did tell her teacher. And so I asked her with a lump in my throat what her worry is. “I worry about Edie coming home from Mexico, will she get better and play with me again” I have no words for how I feel hearing our 5 year old baby has this huge worry 😢💔 💙🕷❤️ JustGiving.spider-ede.org.uk www.spider-ede.org.uk Text EDIE03 £? to 70070 #Fight4Edie #DIPGAwareness #MentalHealthAwareness #TalkAboutIt #LoseTheStigma

What an unreal #spiderederock of our beautiful Edie done by @sophie._mua absolutely amazing ❤️💙

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