Category Archives: Fund Raising

Leya’s Journey Not for Profit Organisation

Sorry I haven’t updated much we have been busy getting settled in at home and just being a family again!! But I just wanted to do a quick update on the NFPO and what we are fundraising for. 

So Leya’s Journey is now all up and running as a not for profit organisation with its own bank account and paypal account. This basically means that we have a committee that oversee all of the fundraising events, can apply for grants and have control of the bank account. 

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So what are our aims?? 

Our immediate aim of the group is to raise money to help Plymouth CHDU purchase 3 sets of sensory lights for use on the ward (currently they have 1 set between 4 beds).While Leya was in CHDU she was attached to loads of wires and monitors so it was impossible to move her and these lights were a godsend to keep her calm while she was having a coughing fit and to keep her occupied while me and Dan would take a break. We would love for the unit to be able to have one per bed so that the little ones do not have to share. We would also like to donate some money to the Plym unit where Leya had her operations. There is a waiting room for parents to sit and watch TV and also and area for the older children to play once they have recovered a little. This area is 100% dependable on donations to keep it running!

We also want to fund Makaton sign language lessons, firstly for Leya’s  immediate family but hopefully we will be able to have a pot of money so other parents/children in the community will also be able to learn! As Leya’s recovery is still a bit of an unknown we are unsure of what items she is going to need at this point. We know that she is going to need speech therapy in the future but she may face other problems when the tracheostomy is removed (including when this will actually happen). I will be keeping this blog as well as the fundraising page up to date so if things change and our goals change we will adapt our goals to help Leya in any way we can. 

But this is were we are dreaming big!! Our LONG term goal is to able to provide a place in Bude for disabled children to go, currently we have to travel a long way to attend groups, sensory sessions etc this is a hassle as the amount of equipment we have to take is a lot but also we are unable to travel with Leya alone so we need someone with us. I would love to have somewhere in Bude where parents could go without to much upheaval and where parents feel safe and happy for their children to attend. So we are going to dream big and see what we as a community can do!!

If anyone would like to raise money for Leya by taking part in a sponsored event, organising a fund raiser or just donating how ever much you can then please dont hesitate to contact the committee by email: leyasjourney@hotmail.com and we will forward a short application form to you.

You can keep up to date with Leya’s progress at her facebook page: https://www.facebook.com/Leyasjourney?ref=bookmarks

You can see how the fundraising is going and events being held at: https://www.facebook.com/groups/1428626847416602/

And you can donate via our paypal account: https://www.paypal.com/uk/cgi-bin/webscr?cmd=_flow&SESSION=cvyjuaZDWjsfi_JSVNokaderT6ICJco2Y5RfPUITqWJvGzptyvGOI8LeZlu&dispatch=5885d80a13c0db1f8e263663d3faee8d69a70501aadbc2ff6a1e7e8cc0df6b0b

Thank you in advance for any donations, events and help it is all greatly appreciated!!! 

Lots of Love 

Dan, Casey and Leya

Leya 2

 

 

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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Anxiety, Depression and Opening Up

So to start with I want to say this post is really deep (sorry guys) but I feel that I can share with you guys how Im feeling as part of what i have learnt is to share how you are feeling can help!!And tbh its easier to write it down rather than actually speak to people.

First off I want to praise all the nurses at Derriford hospital and how they have supported myself and my family throughout both our visits!! Im really glad of the support from the nurses these last few days!! I have really been struggling for a couple of days with the not knowing and the lack of control I have.

Some of you may know that I suffer from Social Anxiety Disorder and Depression. I have suffered from both of these from quite a young age. I have had counciling many times but until I was ready it never worked. But when I was ready I learnt that a good way to keep myself from having a downward spiral was to open up by either talking to someone or writing it down!! So here I am choosing that at this moment it is easier to write it down.

The way I manage my anxiety and depression is to have control, be organised and to be with familiar people. So as you can imagine atm none of these are within my grasp. But the nurses at Derriford have been amazing at reassuring me regard how im doing but also how Leya is doing. Being isolated due to waiting on the whooping cough results has also be a major factor to me struggling as I feel that doctors arent taking me seriously and my paranoia makes me doubt if they think I am making this up or worse than it actually is!!

So today we had Leya’s heart scan which came back normal!! MASSIVE sigh or relief. But on the flip side to this it means that we are no closer to find out what is wrong with her. But her smile is what is keeping me sane atm!!

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So with this result we are still in the dark with what is causing these episodes. This is what I am struggling with, I know that we needed to have the tracheostomy because of the VCP but we were told that this would stop these episodes so for them to have carried on I kind of feel responsible. As many of you parents out there if your child has ever been ill you will know that you would give anything to swap places with them and that couldn’t be more true at this present moment.

So the last few days I have been feeling really down, useless and just generally crap!! I have been told Im allowed off days as what Im going through is a lot but they way my mind works is that Dan and our families are going through it too and they are coping so this is turn makes me feel worse. Its a viscous cycle my emotions but I am trying to grab them and keep hold of them very tightly as to gain control of them. Its a much of me feeling useless as frustrated!! I just feel that my head can not take any more bashing against this rather large brick wall!!

On a happier note we have got Leya’s humidifier for home and we have the funding for this one and a spare just in case!! And its rather fancy and we have seen an improvement with Leya’s dryness which is a improvement for her as it means less suctioning and less nebulisers.

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She has also put weight on so she has gained what she lost and put more on but she had been on IV fluids so we are expecting some of that to come off and the dietician will be extra happy with her if she keeps going like this!! She now weighs 11.7lbs!!

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So to finish this blog I just want to say that I have written this as much to help me get things of my chest but to also show others that you can talk about mental health as there is still a big dark cloud about it!! It is not a weakness, it can not be helped, it doesn’t control you or make you any different from anyone else and it has taken me a while to understand this. So for anyone who reads this with the same problem keep your head high when your feeling down as your just as normal (whatever that is) as everyone else!!

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

Email: leyasjourney@hotmail.com

Lots of Love

Casey xx

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Finally home….But only for 2 Days 😢

So as the title says we managed to get home on Monday YAY!! So we got the news that unfortunately it could take anything up to 2 months to get Leya’s humidifier sorted and we could stay until then (HELL NO was my answer) so we were sent home with extra nebulisers till this is to be sorted out!!
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So I rang mum (we didnt have the car because of the MOT fiasco!!) to ask her if she was busy and if she wasnt could she come and pick ALL 3 of us up 😃 commence the shouting down the phone!! At first she asked if I was lying then put me on speakerphone to tell Leya’s Great Grandad (g-dog) and her Uncle Kyle and Cameron to say they were happy was an understatement!!

So mum arrived and her and Dan took our things to the car (there was a lot after nearly a month of being in here) and of course there was no parking spaces near but in car park E the furthest away!! They filled the car then the waiting began….and carried on and on and then finally we got Leya’s 2 carrier bag full of medicines (I would like to state here that my daughter is not a avid drug user but they supplied us with two weeks worth 😜). So we could finally escape.

We got downstairs and I swear both myself and Leya hissed and started to burn when we came into the light (yes a vampire comparison) we had been in there for so long that the light (it was a dim day) was just far to much for our eyes!!

So we arrived home (sorry the picture is dark) to the family who couldn’t quite believe we were really home. Well Tieran the most as they didn’t tell him we were coming home so his face was the best 😁.

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Let the first night commence…all was back to normal Dan sleeping through the night and me not sleeping a wink just incase I missed Leya crying but once again our little piglet was fantastic and slept all the way through!!

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So we were settling in, sorting out our new room, getting used to the equipment (your used to seeing it in hospital but its looks strange at home), teaching everyone how to care for Leya and the new sounds she makes all was good!!

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Wednesday came and we went and spent the afternoon with our friends!! Which was amazing to catch up and see how much the not so little ones had grown!! Leya took a liking to Ethan and his arm which she decided tasted amazing.

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So this is where the trouble starts. I take a walk to morrisons (in our new buggy which is amazeballs) to get some tea, Leya decides that she was to have a blue episode and stop breathing 😩 so I calmly suction her and helped her to calm down and she starts breathing again (i though I was going to have to do an emergency trache change) so i get home and she has another one not good. This is when the sinking feeling starts to occur, have they diagnosed the right thing, have we put her through all this for no reason??? So to be on the safe side we decide to change the Trache just in case its blocked. It was then we saw the Granuloma, for those of you who are thing WHAT THE HELL IS THAT?? It is basically Leya’s body trying to repair the hole that shouldn’t really be there, no biggy we put the new Trache in and called HDU to see what we had to do.

The ENT want to see Leya just to check all was ok, so of we went to Plymouth thinking we were heading for just a day out, how wrong was I.

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Leya was seen by the ENT team when she arrived, they cortarized the granuloma and gave us some steroid cream but this is when she decided to go blue TWICE in front of him. Bring in the Peds consultant… “We are not happy for Leya to return home we would like to observe her overnight”

Mum and Cameron left with the new pump (yes this is the day one of her suction pumps decide to break) this is when my daughter decided that in front of the nurse and just for fun she would have quite a few apnea episodes, go blue and drop her oxygen sats!! Que me feeling sick to my stomach with worry as to what is causing my little girl to struggling to breathe again. On goes the humidification and back to our second home of HDU.

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So bringing to story to a close we have been told we are back to square one, they think someone else is wrong but they are not sure what or where. She has had a chest X-ray which is clear, loads of blood test (i cried as it was a lot and her poor little hand is now bruised) and more tests to come.

Today she has been put on IV fluid as she has started to throw up her feeds again and has lost weight so she is dehydrated. We have been put into a cubicle as she has a viral infection (once again dont know what or where) which could be whooping cough so we have to be on the safe side.

So until we find out more or what is wrong with Leya and she has a had a prolonged period of keeping her oxygen up, not going blue and breathing all the time we will be staying in hospital. So as Dan worked out today our little poorly piglet has been in hospital for more than a third of her life already 😢

Oh and just to make life a little more exciting for us someone decided to reverse into our car and take the paint work and scratch our back bumper, just another think I need to be dealing with right now NOT!!!

So we are hoping that someone up there is willing to give us all a break and get us home again (for a long time) and let nothing else be wrong with our baby girl.

Lots of Love

Dan, Casey and Leya xxx

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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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