Good Evening,
Welcome everyone and thanks for joining us here for another update on Phoebe's progress.
Today has been a very positive day on the feeding front and Phoebe’s appetite in general. The morning was fairly busy with phone calls, Phoebe and I busied ourselves sorting things out in our spare 'room of doom' upstairs. It’s so nice to just spend time chatting with Phoebe, she loves mooching and actually helps me out by pulling everything out on the floor!!
Over the past few days we have had to call for help from the Community nursing staff who have called to re-insert Phoebe’s NG tube due to it escaping when she is vomiting....tonight was no exception. Just as we were taking Phoebe to bed around 7pm as she was so tired, the tube unexpectedly came up with some sickness, we contacted the hospital and they arranged for us to be seen as soon as possible in a cubicle due to being semi-isolated. We have a great team looking after us at the North Staffs Hospital Childrens Wards, Ade and I were saying how lucky we are not to have to travel to Manchester each time the tube needs replacing.
Phoebe is a little unsettled tonight and has woken a few times, she is having a feed via the machine as we speak and hold on……………
Ok, I’m back unfortunately Phoebe has been sick again but on a great positive, we manag
ed to be ready in time and her tube has successfully stayed down…woohoo!! Thank goodness!!
Welcome everyone and thanks for joining us here for another update on Phoebe's progress.
Today has been a very positive day on the feeding front and Phoebe’s appetite in general. The morning was fairly busy with phone calls, Phoebe and I busied ourselves sorting things out in our spare 'room of doom' upstairs. It’s so nice to just spend time chatting with Phoebe, she loves mooching and actually helps me out by pulling everything out on the floor!!
Over the past few days we have had to call for help from the Community nursing staff who have called to re-insert Phoebe’s NG tube due to it escaping when she is vomiting....tonight was no exception. Just as we were taking Phoebe to bed around 7pm as she was so tired, the tube unexpectedly came up with some sickness, we contacted the hospital and they arranged for us to be seen as soon as possible in a cubicle due to being semi-isolated. We have a great team looking after us at the North Staffs Hospital Childrens Wards, Ade and I were saying how lucky we are not to have to travel to Manchester each time the tube needs replacing.
Phoebe is a little unsettled tonight and has woken a few times, she is having a feed via the machine as we speak and hold on……………
Ok, I’m back unfortunately Phoebe has been sick again but on a great positive, we manag
ed to be ready in time and her tube has successfully stayed down…woohoo!! Thank goodness!!Thanks for your question Lissa, one of the side effects of Phoebe's immunosuppressant therapies is promoted hair growth and this can also occur with a change of colour. Phoebe's hair will return to her beautiful blonde colour when we start to reduce the dosages and complete the course of therapy.
Will keep the blog brief tonight as we have a clinic day in Manchester tomorrow so I’m sure we will have much more to tell you but for now here is a little picy of Phoebe whilst we were in the bathroom brushing her teeth tonight!!
For now dear friends…rest easy and we’ll catch you tomorrow….
For my peculiar friend….
‘Angels are our tireless cheerleaders and offer us steadfast
support’
Whenever, wherever, however…your friends are here even if it’s just to bring you a smile to clear the clouds and help you through the day!! Xxxxxxxxxxxxxxxx
Much love
Lynn, Ade, Phoebe and Spirit Eleanor xxxx
Much love
Lynn, Ade, Phoebe and Spirit Eleanor xxxx
2 comments:
well guys i dont know how you do it. molly has had a virus and has been being sick since friday and not eating either
im finding it so hard and its only been three days you guys are a tower of strength and have my admiration more then ever!!
hope clinic went well and that pheobs is piling on the pounds ive lost that ive sent her way
much love
becky mark and molly
Hi guys!
What a gorgeous photo - those eyes!!!!!!! Aahhhhhh! Look out Ade, she'll have you well and truly wrapped around her little finger when she flashes those at you!!!!!!
Hoping all went well in Manchester today and that Phoebe is starting to gain weight a little bit. Been thinking of you all.
Lovely to speak to you last night lYnn. we must try to catch up soon.
Take care
Lots of love
Jude West Maddie Alex and Chlo-Jo
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
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