Tag Archives: Progression

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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