Tag Archives: Vocal Cord Paraylisis

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. 

Leya

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

 

 

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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