Welcome Dear Bloggers,
Thanks for joining us again and we hope everyone is well.
We finished our mail last night with the fact that Phoebe had been a little sick but then settled back off. As Ade and I headed to bed, we heard the familiar coughing sound that means fly up the stairs as fast as possible and get to Phoebe before she is sick and the tube comes out. We just made it in time to reach for the nose tunePhoebe out of the bed as she was starting to be sick again and she really struggled as this was just mucus.
We eventually settled her again and had a really good nights sleep, just wish it felt longer than five minutes!! Before we knew it, Phoebe was waking early around 6am, I finally opened my eyes and called to Phoebe that I was coming, even though it did take me a while to gather myself.
Even though we are at home and for the most part reasonably relaxed, the day can be really tiring especially as we have to be focused on the feeds and medicines, when you have finished one dose it seems like you are starting to prepare the next!
Phoebe energises us ready for the day and you can just tell she really enjoys going down the stairs for the first time in the morning, switching the alarm off.
It’s lovely preparing breakfast together and if Phoebe could reach the cutlery, I’m sure she’d set the table for me!! Phoebe understands tasks and instructions so well and has settled into the routine of tidying away after herself, putting her own books and toys away, bless her. It’s all good fun to her and she enjoys helping out. Phoebe has been brilliant again today and seems to thrive being at home, over the next couple of weeks, we will start to take Phoebe out for a walk just around the estate to give her some fresh air, it has just been to cold recently as we don’t want to risk Phoebs getting a chill. At the moment she is benefitting from having the freedom to wander around the house, opening cupboards and drawers, taking things out, putting them back and would be more than happy to do it all day!! Its necessary to restrict Phoebe a little when she is having the nutritional feed and meds but we of course take the opportunity have a hug. You can really see her character coming out now, it’s so funny she has recently started to give a little squeeze, it can be on the cheek or wherever she can gently pinch some skin along with her cheeky smile that just melts you.
Ade and I have both feel that Phoebe has really turned a corner over the last few days, her appetite has improved slightly and she just seems to be happier in herself. Phoebe is drinking well too and this helps to alleviate any worries about dehydration.
The troops have been today, Phoebe was asleep for quite a while before lunch, she finally woke and lay listening to everyone downstairs. We stayed quiet for a while to see if Phoebe could recognise the voices, once she did, we headed straight downstairs to see them, she was so pleased and the singing started immediately!!
Phoebe ate well at lunch time having some veggie soup with bread and for dinner this evening mashed potato with broccoli and gravy, she really enjoyed it, so we left the feed for a while as it appeared Phoebe was quite hungry.
Just before Mum and Dad left, Phoebe became quite tired so we took the opportunity to give her an early night. With meds all completed, we thought it was going to be a restful night but so far this evening Phoebe has been very sick, she does get upset at night mainly because she is still sleepy we remind her that its no problem. Tonight I had to change the dressing on her face due being sick, she doesn’t like it but will accept it really so well.
Due to all the sickness tonight, we are late finishing the blog and Ade has just walked in to ask why he can see my mobile in the washing machine as we needed to wash Phoebe’s sheets ….aaarrggghh!! hey ho, never mind, worst things happened at sea I guess!!! We have a very early start tomorrow, we will say goodnight and update you all tomorrow with a few more details from Rob on Phoebe blood counts in our weekly clinic at The Royal Manchester Clinic.
Sleep well dear friends…
Much Love
Lynn, Ade, Phoebe and Spirit Eleanor
Thanks for joining us again and we hope everyone is well.
We finished our mail last night with the fact that Phoebe had been a little sick but then settled back off. As Ade and I headed to bed, we heard the familiar coughing sound that means fly up the stairs as fast as possible and get to Phoebe before she is sick and the tube comes out. We just made it in time to reach for the nose tunePhoebe out of the bed as she was starting to be sick again and she really struggled as this was just mucus.
We eventually settled her again and had a really good nights sleep, just wish it felt longer than five minutes!! Before we knew it, Phoebe was waking early around 6am, I finally opened my eyes and called to Phoebe that I was coming, even though it did take me a while to gather myself.
Even though we are at home and for the most part reasonably relaxed, the day can be really tiring especially as we have to be focused on the feeds and medicines, when you have finished one dose it seems like you are starting to prepare the next!
Phoebe energises us ready for the day and you can just tell she really enjoys going down the stairs for the first time in the morning, switching the alarm off.
It’s lovely preparing breakfast together and if Phoebe could reach the cutlery, I’m sure she’d set the table for me!! Phoebe understands tasks and instructions so well and has settled into the routine of tidying away after herself, putting her own books and toys away, bless her. It’s all good fun to her and she enjoys helping out. Phoebe has been brilliant again today and seems to thrive being at home, over the next couple of weeks, we will start to take Phoebe out for a walk just around the estate to give her some fresh air, it has just been to cold recently as we don’t want to risk Phoebs getting a chill. At the moment she is benefitting from having the freedom to wander around the house, opening cupboards and drawers, taking things out, putting them back and would be more than happy to do it all day!! Its necessary to restrict Phoebe a little when she is having the nutritional feed and meds but we of course take the opportunity have a hug. You can really see her character coming out now, it’s so funny she has recently started to give a little squeeze, it can be on the cheek or wherever she can gently pinch some skin along with her cheeky smile that just melts you.
Ade and I have both feel that Phoebe has really turned a corner over the last few days, her appetite has improved slightly and she just seems to be happier in herself. Phoebe is drinking well too and this helps to alleviate any worries about dehydration.
The troops have been today, Phoebe was asleep for quite a while before lunch, she finally woke and lay listening to everyone downstairs. We stayed quiet for a while to see if Phoebe could recognise the voices, once she did, we headed straight downstairs to see them, she was so pleased and the singing started immediately!!
Phoebe ate well at lunch time having some veggie soup with bread and for dinner this evening mashed potato with broccoli and gravy, she really enjoyed it, so we left the feed for a while as it appeared Phoebe was quite hungry.
Just before Mum and Dad left, Phoebe became quite tired so we took the opportunity to give her an early night. With meds all completed, we thought it was going to be a restful night but so far this evening Phoebe has been very sick, she does get upset at night mainly because she is still sleepy we remind her that its no problem. Tonight I had to change the dressing on her face due being sick, she doesn’t like it but will accept it really so well.
Due to all the sickness tonight, we are late finishing the blog and Ade has just walked in to ask why he can see my mobile in the washing machine as we needed to wash Phoebe’s sheets ….aaarrggghh!! hey ho, never mind, worst things happened at sea I guess!!! We have a very early start tomorrow, we will say goodnight and update you all tomorrow with a few more details from Rob on Phoebe blood counts in our weekly clinic at The Royal Manchester Clinic.
‘I don’t know what your destiny will be, but one thing I do know: the only ones among you who will be really happy are those who have sought and found how to serve’
Sleep well dear friends…
Much Love
Lynn, Ade, Phoebe and Spirit Eleanor
3 comments:
OMG!! Your mobile in the washing machine!!!! What a nightmare!! It is so good to hear about Phoebe's appetite even though she was quite sick tonight. And her energy and curiosity. It's amazing to me that with all her little body has been through, her brain is still making sure she hits developmental milestones. The human body is an amazing thing!
Keep soldiering on guys. Have a restful night and a good day tomorrow!
Tons of love
DenXXXXXXXXXXXXX
Hi Ade, Lynn & Phoebe, It was lovely to speak to you yesterday (Ade)to hear how well phoebe is doing and how she getting her appetite back. The girls @ Tolgate must be fed up of me as I am constantly asking about you all evey lunch time!!! i cant wait to see you all up there again very soon, It must be fantastic now you are home it certainly sounds as tho Phoebe is enjoyin it. We all know how nice it is to be in your own home so for you guys it must be extra special!! i am sorry its short but i have to head off to work now (cant wait)!!!! Have a lovely day and hopefully see you all soon Love Lois & Co xxx
Hi Phoebe,
So your mummy is just like ours - putting mobile phones in places they shouldn't be, at least your mum found hers....
Glad you are eating more food recently, we look forward to having ice creams at Trentham Gardens with you in the summer. You might have to help Emma with learning to walk though; she has a big bruise on her head from nursery today - pulled up on a table then let go!
Look after your mum and dad, keep smiling.
love Cameron and Emma xx
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