Myahsjourney
@myahsjourney
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Our beautiful Myah and living life everyday with Hydrocephalus, Epilepsy, Tracheoesophageal fistula, peg Feeds, hearing and vison issues. Follow our journey
Belfast, Northern Ireland
Joined March 2021
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Our beautiful Myah is back in hospital-please keep her in ur thoughts that everything is OK. 🙏🙏
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And it's all over her. Head opened, stomach opened 🙈, but surgery was a success 🙏 back recovering on the ward. Thankyou again everyone 💓
#recoverystartsnow
#shuntlife
#hydrocephalus
💖💖
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Our beautiful Myah will face another day in theatre 2moro for more surgery on her head/shunt. I always try to stay positive but I'm so broken right now, life can be so shit sometimes. Her 4th major surgery in as many weeks. She's just a 5yr old child who doesn't deserve all this
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Still not out of the woods and will need a few weeks in hospital BUT. ..... Out of ICU and into the ward (and shes delighted too). 💪
#roadtorecovery
#myahsjourney
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The face of a girl who's had 3 hospital appts in 24 hrs. All good though. Health is great ATM - Wee woman is flying 🥰💪
#yourhealthisyourwealth
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Just a little update on our beautiful Myah. She is doing great, we will still be in for a week or 2, but we are defo on the mend and going in the right direction. We should be home for the big man coming 🎅 much love ❤️
#HomeForChristmas
#shuntlife
#hydrocephalus
#roadtorecovery
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Our hospice stay didn't go as planned as we had leave there and be admitted to hospital yesterday due to being so unwell. Just hoping she's well enough for planned surgery for the morning. We really need this to go ahead as we need answers 🙏 wee woman never gets a break 😭
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Update on myah. She had another operation tonight to remove her port as they think this was what was causing her infection. She has a rare infection in her blood and sepsis. She's is now in intensive care as her body is very weak and poorly. We Pray for a better tomorrow. 🙏
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Just a happy healthy girl - taking things day by day... 💪💜
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So many messages asking after our girl. She's still a few weeks in hospital ahead of her but at least that smile is back. Hopefully home for the big man coming 🎅 Thankyou for the genuine care, greatly appreciated 💜
#shuntlife
#hydrocephalus
#roadtorecovery
#princesswarrior
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Our wee woman js Enjoying a few days of good health. 🙏 long may it continue 😍
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Almost 6 weeks we have been in hospital. The wee woman is nearly ready to go home. Pray we get our of here this week. (Ps look at that work of art 🎨)
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Just an update on our beautiful Myah. We are still in the RVH but getting well looked after and hopefully on the mend. Thankyou to everyone for your well wishes. We Say it everytime, but mean every word... your health is your wealth. ❤️🥰
#myahsjourney
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Brave. Strong. Resilient. Beautiful. I am in awe of you Myah 💔🥰
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Happy birthday Myah 🎂💜
Today our big girl turns 6. can we get some birthday wishes 🎉🎊
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Our beautiful girl getting the rest she needs. Hopefully she doesn't take too long to get back to her cheeky self ❤️ thankyou all for you messages 😘
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Thankyou everyone for your messages asking after Myah. Today she is sitting up and smiling and looks like she is on the mend... what a great start to the day. Our hurricane is back 🌀😁
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Thankyou all for your messages. We are still in hospital and not much change. Waiting on results to see if we can find out what's going on .. pray for better days ahead 🙏
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Our myah is back in the RVH for sick children. Some scans and tests to be to see what's going on. Pray nothing too serious 🙏
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Six years ago we were told our child was blind, with no vision and no connection from her brain to her eyes. Fast forward 6 yrs and Today we got news her sight is perfect.. infact better than it was 12mths ago, so improving. strength to strength kiddo 💪
#YOURHEALTHISYOURWEALTH
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This wee champ has bounced back brilliantly. Still gonna be in hospital for another month or so BUT we can now take her home for a few hrs a day, and hopefully get her home for good before Xmas. Buzzing (so is she lol).
#roadtorecovery
💚💛
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And finally... that smile is back😁 Positive for whooping cough, positive for adenovirus, positive for parainfluenza- but lots of rest and antibiotics and hopefully that's her on the turn 🙏
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WHEELCHAIR DAY 🦼😍
Today our baby girl officially got her very first wheelchair. Feel a wee bit sad, not gonna lie, BUT.. We are forever grateful that we have all this amazing equipment to make her life that little bit easier.. and plus, how cute does she look. 😍😍
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And shes home. We finally got some answers, and a date to return for day procedure in a few months. Thankyou again for all your messages asking after her 😍
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GUESS WHOS FINALLY HOME 😁Almost 6 (lonnnng) weeks, 3 major surgeries, and a cancelled holiday to America but WE ARE HOME. Thankyou to you all for your genuine messages of care and support, so overwhelmed. 💜😍
#myahsjourney
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Update.... Myah just too sick for theatre today. Need to let her wee body rest for a while and then maybe try again later in the week. Thankyou all as always for your messages and calls x
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Back to school she goes looking like a picture of health 😍
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Merry Xmas everyone. What a year its been, but we are so grateful to be spending it at home as a family. We have had so much support and genuine care from you all. We can't thank you enough. Have a wonderful day - stay safe. Lots of love, Myah xx
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#Perfection
😍 a little bit of an improvement today 🙏 trying her back on milk see if we can build her back up 🤞🤞
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So many messages and DMs asking after our beautiful girl. We are still in Intensive care, a bit up and down really. Few more blood tests and scans today but stats and numbers are looking a bit better. Hopefully know more later. Thank you all for checking in on her 🙏❤️
#grateful
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If Friday had a face .... 🤣❤️
Have a great weekend everyone x
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Our beautiful girl enjoyed a few days of respite in the NI CHILDRENS HOSPICE this week. We are so grateful to have these places the people who work in them. They are simply amazing for what they do for so many children and their families.
#nichildrenshospice
#thankyou
💜💛
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Sitting up and feeling better.... Nothing gets her down. 3 surgeries in 10 days. She is starting to turn the corner 🙏❤️
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Our girl supporting WORLD DOWN SYNDROME DAY in school.
#RockYourSocks
wearing our funky odd socks symbolises the uniqueness of every chromosome
#WorldDownSyndromeDay2024
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Another AMAZING gesture from our spurs family.. Jamie Donely sending over his shirt he wore making his PL debut, with a special message for our girl. Absolutely buzzing -thankyou so much Jamie
#rememberthename
⚽️🤍
#spursfamily
#overwhelmed
#myahsjourney
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Right, so the child who gave us the fright of our lives this past few days is at her lark again. Yesterday she was very sick, that sick she needed a bed in intensive care. The amazing surgeons operated and removed the source of infection and today she's like a diff child 🥰🙏
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Why is she sitting there like she's 25, and not 5. 🙈🤣🤣 sass and attitude LOL... this is the Myah we know and love. Complete hurricane🌀 - so good to see her back smiling again.
#feelingbetter
#roadtorecovery
#myahsjourney
💜💜
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Our beautiful little myah has been very sick today. Shes off to theatre again now. Can u all please pray she gets through this OK. She has a blood infection and sepsis and we are worried sick. Again thankyou so much for the messages. We are so overwhelmed. We are so grateful ❤️
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Schools out for summer ☀️ last day of Primary 2 for our big girl. A tough year with sickness, but we got there in the end. Thank-you as always to everyone who helps and works with me on a daily basis. Happy to say More progression this year👌💪 Now for some summer fun ☀️🏖😁
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Our beautiful brave girl - emergency brain surgery today
#no6
.. She does not deserve this but she gets on with it and smiles like always. In awe of you myah
#hydrocephalus
#shuntlife
#shuntrevision
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HANDS UP IF YOUR HOME. 😁
The only thing better than getting home, is getting home to these beautiful gifts sent from our spurs family. New kit AND a barbie house... wow. We are so overwhelmed- thankyou. All your gifts, texts and messages have kept us going on the tough days. 🥰
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Another one done and dusted. Kid is a machine 💪 in awe of you myah xx
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Sitting up and recovering well. This kid is a machine. Just takes whatever life throws and her, and deals with it with a smile. She is a warrior- 💪 thankyou all so much for your kind messages, very overwhelmed xx
#hydrocephalus
#recovery
#shuntlife
#brainsurgery
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Smile - it's Friday. One day closer to home (whenever that may be) that smile is back 😊
#roadtorecovery
#homeforsanta
#shuntlife
#hydrocephalus
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Ready to watch
@JeffStelling
and the boys from our hospital room. Revovering from her 4th brain surgey 2 days ago but that wont stop us getting to watch GSS
#wegotthis
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Few days of respite for our girl at
@nichildrenshosp
💜💛 she is living her best life getting spoilt. Grateful for having this amazing place in our lives. Enjoy our beautiful girl 🥰
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Pretty cool that the
@BelfastGiants
boys came into the ward today to give out some easter eggs. Myah made a miraculous recovery when these 2 walked in haha.
#belfastgiants
#givingback
🏒 💜
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Today i am 4 🎂🎉 its been a tough 4 years but here we are, Still fighting, still going strong and most importantly still smiling. Happy birthday Myah - the only way is up 😊😊
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Myah will face another day in theatre. This infection has now reached her head/brain, which we were hoping would not happen. Looks like today they will need to externalise the shunt until her body fights off this bad Please keep her in ur prayers today.
#Hydrocephalus
#shuntlife
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We got to go home for a few hrs today. Wee woman was buzzing. We took full advantage getting the house ready for the bigman coming 🎅 roll.on getting home and santa coming
#onedayclosertohome
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Our beautiful little Myah is in theatre now having emergency brain surgery on her shunt. Please keep her in ur prayers that all goes ok .. we woman does not deserve this. Never gets a break. 💔
#shuntlife
#hydrowarrior
#shunt
#theatre
#revision
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In good health and enjoying her summer ☀️ wish life was this straightforward every week.
#longmayitcontinue
🙏
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HOME 🥰🏡
Our girl is finally infection free. A day in theatre can wait for another few weeks. Just happy to get her home. She is buzzing LOL fistpumping in the car all way home lol
#happytobehome
#yourhealthisyourwealth
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Blocked valve in the head, but brain surgery no 6 was a success 🥰 this wee woman is a machine. In awe of how strong she is xx
#shunt
#shuntlife
#hydrocephalus
#myahsjourney
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Christmas at children's RVH 🎄🧑🎄 hopefully home for Xmas 🙏
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Here's miss myah enjoying life doing the simple things we take for granted every day - Like going shopping and going for for some lunch with mummy. ❤️😍
#itsthesimplethingsinlife
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Our big girl away for a few days respite at the Children's Hospice before going into hospital for surgery on Thursday. So lucky to have such amazing places and facilities for our girl 💜💛
@nichildrenshosp
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HAPPY NEW YEAR everyone... We have met so many new friends and been overwhelmed by a sea of genuine care and support that we have recieved during some tough times. Thankyou all so much for helping us on our journey. Here's to a happy, healthy 2024. 💜 stay safe
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Our TOF baby.
Our beautiful Myah was born with type C "Oesophageal atresia and tracheo-oesophageal fistula". This was repaired when she was 1 day old successfully but unfortunately she never developed suck or swallow and is now completely NIL BY MOUTH as a result.
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Running, walking, crawling and even standing are just some of the things we all take for granted. NOT MYAH. She has to work so hard, and she is doing so well. Geting stronger every week. Keep it up my girl, you make so proud ❤️❤️❤️
#hydrocephalusawareness
#warrior
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