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By @enablingevie, Jul 12 2012 08:17PM

Ahhhh it's been a busy few weeks and I have some work to do to get myself a bit stronger for the next steps I have to climb. Auntie Jodie has offered to update the blog for me as I need to reserve my energy. Love hearing from you all and my mummy and daddy love seeing you all. Keep coming :)

Over to Jodie- I'm off for a doze

Much love

Baby Evie xxxx

So the past few weeks for the Shears have definitely been a rough ride. Evie's feeding tube has been incredibly difficult to manage and stabilise. After the insertion of a nj tube (still going through the nose into her tummy and down further into the jejendum) she was very sickly after session 6 of chemotherapy. This led to increasing amounts of vomiting and this eventually led to the tube being dislodged and coming out. Soooooooooooooo back to the ng tube but as Evie was having a ph study to look towards alternative feeding methods, she wasn't allowed to have her reflux medications for 3 days. This meant a really hard time for all with lots gagging, vomiting and feeling awful from chemotherapy. Due to a catalogue of frustrating errors and problems demonstrating the health system is clearly under too much pressure, it was 2 full weeks before the new, right size nj tube was reinserted and Evie could keep a sufficient volume of feed down to begin putting weight back on. A big set back in terms of wellness, thriving for minimal weight gain and overall reduction of distress. So many professionals and mum and dad are very disheartened that the teeny tiny flashes of progress that we saw a glimmer of hope, have to be initiated all over again.

Another impact meeting on monday and a room full of professionals. So incredibly overwhelming and draining for all of the family. Many things were discussed but the outcomes have been a bit sketchy. To summarise:

1) all being well with Evie's blood counts by next week, she has been booked into GOSH to have her hickman line removed and then a tube inserted through the intestine wall to feed her to stop the naso- feeding issues. She has to be stronger for this so fingers crossed she can get some more sufficient calories in her and some strength to go under general anaesthetic.

2) they are looking into providing an additional nights support for mum and dad to get some more help over the weekend.

As you can imagine after 2 hours to come out with 'possible' actions is very draining and hard to take, but fingers crossed these 2 things can go ahead.

There is also a big date coming up on the 25th July where Evie undergoes her examination under anaesthetic to review the next stages of treatment for Retinoblastoma. A big day as of course we all have our fingers and toes crossed that the tumours are responding to the chemotherapy.

Thank you to everyone who has been in touch, been to visit, followed on twitter and continued to help the family with thoughts, love and strength.

The website will be going under some maintenance at the weekend so please keep your eyes open for updated photos and changes to the fundraising pages.

Please do continue to get in touch if you have new ideas or any questions through the website contact form

So much continued love and admiration for the shears.

Much love and strength to baby Evie too

Jodes xxxx

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