Tag Archives: surgery

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

 

 

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From the Beginning

Where to start… Last July myself and my newly married husband Dan found out we were pregnant with our first baby!! We were over the moon and couldn’t wait to tell everyone the happy news. We waited till our twelve week scan to make sure all was ok after having a miscarriage the October before but that day came and our emotions were all over the place but wow how could you fall in love so quickly with a black and white fuzz ball??!!
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So my pregnancy was ok apart from the wrongly named morning sickness which I was suffering everyday all day till the day I gave birth!! So now we really started to get excited buying clothes and furniture for her nursery and her pram!! Then our 20 week scan and we were so excited to find out what our little Jellybean was but ohh no those legs were tightly shut!!
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So we had another scan booked in and hoped our jellybean would let us know what sex we were to expect. This was when daddy took to talking to our bump and asking nicely to open our legs to give us a quick peek and SHE did on our 28 week scan!! Our little girl was well behaved and showed off everything (much to daddy’s disgust). Once out of the scan he informed her that she was to shut those legs tight again and not open them for a long time.

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So fast forward to the 26th March 2014 I went for a routine midwife check and this resulted in a quick dash to Exeter where I was diagnosed with pre-eclampsia. Now this is where the trouble begins!! So we were both monitored closely and I was told I would be induced and wouldn’t be leaving with our little Princess Leya. Now a mixed bag of emotions followed “OMG were not ready” “yay she will be here soon” ect…

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So Sunday 30th March was the big day!! The pessary was put in place, the contractions came and then I was checked Monday morning but nope nothing had changed. This is when a doctor with MASSIVE hands came and broke my waters then we were all go!! Im not saying it was easy but it also wasn’t that bad. Both my mum and Dan found me on diamorphine rather hilarious (thats another story) and at 11.13pm on the 31st March our little Leya Kathleen Ellena Raper was born weighing a good 5.13lbs!!

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So we stayed in hospital for 2 days then were sent home. Oh that was scary I wasn’t ready to be on my own without the call button!! But once home we all settled in to family life. We noticed that Leya would have these episodes while feeding and crying of stopping breathing and going blue but when mentioned to 3 different health professions told it was normal and she would grow out of it!! So we carried on with these episodes and just dealt with it.

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So everything was trotting along nicely then on the 3rd May I was rushed into hospital with suspected gallstones (now that is pain). I was scanned, drugged and in for a while and this was hard. My baby was only 5 weeks old and I was forced to be away from her.

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So i was discharged to be review in a couple of weeks time but my little gallstones had other ideas and I found myself back in hospital 2 weeks later but this time was much worse. I would rather give birth 10 whole times than deal with this!! Then my lovely doctor muttered SURGERY so on the 23rd May I went down had my surgery came out and was handed this…

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2 maybe 3 they told me but I was pain free and going home. We stayed with my parents while I recovered and good job we did as on the 1st June Leya was blue lighted to Barnstaple after a massive episode of not breathing and going blue. We got to the hospital and she was X-rayed and found to have a chest infection but they also thought she has a floopy larynx which was the reason they thought she was stopping to breathe. She was kept in with a review in 8 weeks time.

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So home we were doing well the antibiotics had done their job and things were looking up!! Until the night that changed ours and our little princess’s life!! It started as a normal day but Leya had been rather sleepy and off her feeds which is really unlike her. At 5pm she had another episode but this was the worse she had ever been so we called the ambulance as normal. The first responder arrived and she had a further 6 episodes in front of him. Then came the dread and most heart-wrenching words air ambulance, this is when we knew it was serious.

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We arrived at Derriford and she was seen by the ENT team where they put a camera down her nose (I didn’t see this as couldn’t bare my little girl having to go through that) but daddy was there the whole time. They kinda said yes its a floppy Larynx so we got used to that idea and that she would grow out of it. Then the ENT specialist came round Monday and this was the day we got her diagnoses she unfortunately had the not very well known and not so common Bilateral Vocal Cord Paralysis. This shattered our world. So many questions… What did this mean??….Would she talk??….Would she get better??..

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So the hardest decision came on the 17th of June when Doctor Rainsbury came to see us and voiced how he felt that a Trackeostomy was our only option to keep Leya’s airway open and to give her the best chance to recover. This was the biggest blow in the world but we didnt really have any other options. So on the 18th June she went down for her operation. This was the longest time for me, Dan and Leya’s Nana who was here to support us. After 2 hours the Doctor called us round to see her. The diagnosis was confirmed.
Leya was crying but there was no sound coming from her and this was the most sinking feeling in the world and I found myself in floods of tears. My baby daughter who was still only 11 weeks old has had this major operation and she was so upset but yet couldn’t let us know. I would have given anything in that moment to swap places with her.

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The next few days were hard for myself and Dan, getting used to the new sounds or lack of, suctioning Leya so she could breathe and just coming to terms with what has happened. But it was all made better with the fact this strong, inspirational tiny baby was still smiling and giggling away.

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So the last few days have been hard as Leya hasn’t been keeping her food down so is being fed through her NG tube as she has lost weight but is still loving her baths and all the attention she is getting from the nurses.

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Me and Dan have been learning how to suction Leya ready to go home and care for her which is a massive learning curve but we will manage. With this condition we are facing a lot of unknowns as we don’t know if Leya’s vocal cords will get stronger or if they do when this will be. So as of today we are happyish, sleeping on mummy having cuddles and looking forward to updating you all next week!!

Sorry its been a long post but now you know our story it will just be updates as and when they happen!!

Leya’s Facebook page please like and share!!

https://m.facebook.com/story.php?story_fbid=10204194742775523&id=1435478768

Lots of love

Dan, Casey and Leya xxx

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