Tag Archives: Star Wars

Finally Some Good News and the Best News EVER!!

So where do I start these last few days have been emotional, amazing, confusing and basically a haze!!

So to start we had a NG tube put in so that Leya could have top up feeds and put weight on. So she is now on only high energy milk taking 120ml 5 times a day which is amazing and shows as she has put weight on and now weighs 11.5lbs!! This meant we needed to go shopping so our 16week old baby is finally out of tiny baby and newborn and into up to 1 month as 0-3 months is still far to big!!

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Daddy also came back to give me a break as I was physically and emotional shattered and Leya was so happy to see him, all smiles, giggles and snuggles!! And we also managed to get out of the ward when she was cleared of whooping cough but didn’t get far before she threw up all in her new pram yuck!!

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This is where you have to listen carefully!! So if you follow Leya’s facebook page you know that she had a mini operation on Monday. For those of you who don’t know this was to remove a Granuloma and to check there wasn’t anymore! Well Leya was first on the list so she was fasted from 7.15am but didn’t actually go in till 4.30pm so was starving. She finally went in and came back out!! She didn’t come round very well, she was really unsettled which was unusually as this hadn’t happened the last 2 times.

We got back to the ward and she was really pale and clammy all night and her oxygen was rather low so she was on oxygen all night but seemed to pick up on Tuesday.

But the operation went well. She had a Granuloma just inside her throat which was removed and one just at the top of her stoma also removed!! They checked her food pipe to make sure that was ok and all was good then came the news that hit me and Dan like a tonne of bricks!!

HER VOCAL CORDS WERE MOVING!!! Cue the tears 😂 We couldn’t believe it in 1 month they had started to work and she can have the Trache taken out!! OMFG was this really happening. I was apprehensive and wanted them to wait a little longer to make sure all was ok but they put in a size smaller but unfortunately she couldn’t breathe with that one capped. Because Leya is small she needs a small Trache to let enough air pass for her to breathe if they cover it over. So the plan now is to let her grow for a while and then try again until enough air can pass and she is able to breathe on her own!!

But she wont have the Trache for life and for not much longer hopefully. My amazing trooper has managed to heal, grow and strengthen in 1 month and she will be having the Trache out as soon as she is big enough!!

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So with that exciting news she then decided it was time to start to try and roll over but hasn’t yet got the hang of it yet!!

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So keep an eye out for the next blog to see how Leya is doing and where we are in her journey that has a little longer to go!!

Love Dan, Casey and Leya xx

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First #Leyasjourney Fund Raising Event

So as I have previously blogged my amazing friends and family had arranged to do a car boot as the first fund raising event for #leyasjourney. Well today was that day and they awoke to rain 😢😩 this is not what we wanted!!

But this soon cleared up and the sun came out and stayed out for most of the day!! So Laura and Kirstine arranged this first event as and you may recall I posted a picture of Laura’s lounge which I thought was the only place storing the items donated but I was wrong!! They were being stored elsewhere too!! So the below photo was only some of the fabulous items donated!!
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It took a big van and a group of the most amazing people to help set up the car boot!! All these items were shown off with a spectacular sign donated to Leya’s cause by Jag Signs which will appear at all her fund raising events!! So they were all set up ready to go!!

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So the day went amazingly, I checked in with my mum (who also helped) and she said people were being so generous, some where buying items and some where just donating. I wish I could have been there just to hug every single person who is helping my baby girl. Dans parents also ventured over to see how it was going and got quite emotional. The day was apparently full of tears and laughs which describes Leya’s journey so far so very apt!!

So they got to the end of the day with just a little unsold!! This will be sold at a later date (still deciding on another car boot or a different event).

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All of Leya’s Jedi Masters (these are the amazing, supportive people who are helping her in her life journey, most of you will understand the reference) gathered at my mums house to count the money raised!! I will show you a picture of my mums reaction before revealing the total!!

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So as you can gather from my mums face it was more than we could ever have imagined. So then the phone call came through too me!! So im on loud speaker saying Hi to everyone one and a massive thanks ect then get told the total of a huge £453.22!! I may have swore a little then I was speechless (yes I know first time for everything 😉) this was huge and pays for a lot already after one event!!

So we sent a little picture to everyone to show how much it meant to us 3 here at the hospital!!

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So the total was then posted on her fund raising page, my facebook, Leya’s facebook and a lovely family member Maria Long then told us she would make up the difference and take the total to a whopping £500!! I can not express how grateful my family are to everyone who donated to help make this possible and to everyone who brought the items available!!

The money that has been raised so far will help us so much and is from only 1 event!! There are many more too come!! Or if you would like to hold your own event or even donate then please join Leya’s facebook page: https://m.facebook.com/Leyasjourney

Or the fund raising page: https://m.facebook.com/groups/1428626847416602

And if you could share this amongst your friends and family to help raise awareness of this not very well known condition it would be muchly appreciated!!

Oh and we also want to say a massive thank you to Chris and Sandra Heard at Pendeen Car Boot in Stratton for allowing us to use their facilities to do this event!!

So as I have said before a massive thank you but this just doesn’t seem enough but its all we have to give atm till we get home and we can squidge you all!!

Lots of Love

Dan, Casey and Leya

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3 months Today!!

Where do we start hay Leya!! Well first off Leya is a whole 3 months old today!!! 🎂

A massive thank you to everyone who have liked, shared, tweeted, retweeted and set up fundraising ideas.
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We also managed to get a re-tweet from non other than Paddy McGuinness which was amazing!!

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So this is just a quick blog to say that my MRI was clear so my condition is down to an immature voice box and fingers crossed I should in time grow out of it. But for now its just a waiting game to see when this will be.

If you could all keep sharing my page, helping my friends fundraise, reading mine and mummy’s blog and getting my story out there I will keep you all updated with regular smiles!!

I also want to give a big shout out to my friend Indie who has facebooked this picture using my #leyasjourney

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Oh yer we have also contacted the Cornish Guardian and the Bude and Stratton so keep an eye out as I may make an appearance.

Facebook page: https://m.facebook.com/Leyasjourney

Fundraising page: https://m.facebook.com/groups/1428626847416602

Hashtag: #leyasjourney

Lots of Love Leya!!

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