Tag Archives: Family

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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Being Overwhelmed… And getting ready to GO HOME!!

So since we last spoke we have had our discharge meeting, been changing Leya’s Trache and had loads of support and gifts from friends, family and even people we have never met.

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So our first Trache change came for both of us, this was scary, upsetting, hard and massively strange. Dan took the lead and did the first one and was amazing at it. This was the first time we had seen her Stoma let alone pulled the tube out and put it back in again!! It took a couple of times to get it back in but Dan didn’t panic and managed to get there in the end but then she was making a funny noise and we remembered about the introducer. This is a tube that goes inside her Trache so that it doesn’t bend as you put it in but then once in place blocks her airway. Dan quickly whipped it out and all was well again.

So the day after my turn!! I hated it, seeing this whole in my daughters throat again was horrible, she is staring right at me crying while I am putting it back in but it went in lovely but I too forgot the introducer!! Ali our amazing nurse did tell us it would get easier and that we would remember. With all this is wore our little Piglet out!!

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On Monday Leya had her first immunisations (very late we know, we have been rather busy 😃). So she has been a little grouchy, sleepy and of her food which isn’t what we need. She has been but on Infatrini which has even more calories and has put a little more weight on which is a step in the right direction!!

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We have been in our very own cubicle since Sunday now and have been taking in turns to stay with Leya to get used to the noises or lack of them so both me and Dan are shattered as neither of us have really been sleeping. It is rather quite during the day but now Leya is not attached to anything we can go for walks and she loves this as she is a right nosey little piggy!!

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So the discharge meeting was on Tuesday and this was to discuss what we needed when we got home, Leya’s reviews and what was left to do before they could send us home!! It was decided that if everything was in place we could go home early next week!! YAY was our first thought then OMG can we cope???!!! We discussed what equipment we would need and it is A LOT!! We will be coming back every 3 months for a review with her ENT and Paediatric specialist.

This meeting was also rather emotional for us as we were told about Leya’s recovery stats. There is a 50/50 chance that her vocal cords will repair themselves. This was hard to hear especially when we thought that long term meant 5-10years but unfortunately when she is 2 or 3 years old if they haven’t repaired we will then have to make a decision on whether or not an operation on her vocal cords would be the best option.

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Finally a meeting was held for Leya’s Journey Not For Profit Organisation. We are in the process of setting this up to raise funds for items that Leya could use, Makaton for our families, friends and young children of Bude to help us be able to communicate with Leya but to also give back to Derriford hospital who have been amazing in diagnosing and treating Leya but also keeping me and Dan sane!!

We have also received gifts from loads of people and some very generous gifts also so we want to say a massive thank you to everyone who has made us feel loved, supported and just generally holding us up!!

Some of friends have also arranged a car boot with many things being donated to the point it has taken over one of their houses!!

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So that has been our week so far, we are currently having our community nurse bring over the equipment ready to go home with and she is lovely!! So we have Dan’s parents coming today to drop off more supplied, take supplies home and have cuddles!!

So from us all here at the hospital we hope you have had a good week so far and it continues to amazing!!

Lots of Love Dan, Casey and Leya

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End of a Long Week and the Start of a Big Week

Wow this has been a long week… We have had visitors, been on our own as daddy was at work, learnt new ways to care for our daughter and have finally been moved to the ward!!
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We have loved all the visitors that have come to see me and Leya!! It has kept us occupied and we LOVED seeing people from the real world 😃. It was lovely so see family and even those who had yet to meet Leya. She gave cuddles, smiles and showed everyone that she is made of some strong stuff indeed.

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We had a lovely visit from both of Leya’s God Mummies to be (hopefully is all goes well and we get out in time) and I had an awesome time with Hayley and she made me giggle and smile and really cheered me up.

Both me and Dan have now been signed off for suctioning which is one step in the right direction and we both tagged team in tie changes this morning which was fiddly and not the easiest thing in the world but between the two of us we managed it!!

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Leya has come amazingly far this week!! She is now off her humidification during the day and wearing either a Swedish nose or her bid. She had her feeding tube removed and is now feeding much better but due to a little weight loss is on SMA High Energy milk, but the amount she is taking is more and more each day so we cant complain to much oh wait we can when she brings it all back up again!! And we have just been moved into our own cubicle on the ward which means most of her care is down to us again!!! This scares the hell out of me and her dad as we have had nurses on call 24/7 for the last week and a bit!! We feel like she has just been born again and we are brand new parents!!

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We both missed Dan/Daddy all week the phones calls throughout the day to update him just weren’t the same but the minute he got back we both felt at ease again!! Leya was full of smiles for her daddy which made us both feel happy that she missed him and was glad that he was back with us!! He is now defiantly not allowed to leave again we are locking him in with us!!

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She is as smiley as even and making the nurses run around after her which is funny and the nurses on the new ward have already fallen in love with her after 10 minutes.

She is still on her antibiotics as she has an infection somewhere but they are not sure where but its banana flavoured so she scoffs that right down without any problems.

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Then we have this massive week ahead of us!! Our first Trachy change is dawning 😁 the nurses will do it first to show us how it is done then me and Dan will have to crack on and have a go!! To say we are cacking our pants is an understatement I mean we have to change a tube that is inserted in our childs very small neck that is her only way of breathing (ahhhhhhh) This is when we feel that maybe taking one of the lovely nurses that we have grown attached to home 😃.

We are hoping that once we have our discharge meeting this week and when everything is signed off and in place we will be coming home!! It is looking like this will happen at the end of this week or the beginning of next this is also another scary thought, but the support from home has and will be amazing!!

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We would like to say a massive thank you to all that have donated, helped with Leya’s Journey and are doing fundraising in the future, your support and generosity has been overwhelming.

So from all of us here at the hospital we are progressing (a little faster than mummy and daddy are ready for) and focusing on coming home!!

Much Love

Dan, Casey and Leya

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