Transplant Day +68 - A steady recovery at home, nowhere better!!!

Good Evening Bloggers,

How is everyone? Hope all is well out there and thanks for joining us here for another instalment on Phoebe’s journey following her Bone Marrow Transplant. It seems like some time ago now …… we recall it was the 11 December 2008. It seems no time at all really considering the speedy and amazing recovery Phoebe has made. We expected to be discharged from hospital mid February and if it was any sooner it would be a huge bonus….our wish was granted!!

Firstly, can I just apologise for the lack of photos again, we were unable to find the card reader to download the pics for you guys. Ade has bought a new one today, unfortunately, Phoebe has had the camera so we need to find that now….Pics should be on for tomorrow….God willing!!

Well, now, I trust that you all had a good weekend and your week is going well, I must say it has been a little easier updating twice a week rather than daily even though I quite miss communicating with you all on such a regular basis. Since Friday we have had up and down days with sickness but throughout Phoebe has remained spritely and really enjoying her time at home. Her development is incredible and we can really see a change in her particularly over the last week or so. Its lovely to actually sing songs together now!!

As it is half term, Helen our dear friend popped over to see us yesterday, aah Phoebe was delighted to see her as we were and she is so relaxed and comfortable in Helen’s company enough to even sing songs for her!!! It was great to catch up having a cuppa whilst Eve and Madeline had some girly shopping time with their Nanny Alwyn!! They do have a far busier social life than us girls these days, hello there Bloggeroonies – did you find an outfit??

Over the past few days, we have had a few visits to the local hospital to have Phoebes tube re-inserted and it shows now that Phoebe understands what’s happened, what we need to do, where we’re going and what’s going to happen next…recently she had started to get really upset even when she recognises the route on our journey! The hospital staff are brilliant time and time again, we are so truly lucky to have the amazing level of care from the team at the North Staffs Children’s Wards…nothing is too much trouble…so thank you guys, we really do appreciate everthing, especially your care and support you have shown to Eleanor, Phoebe and us as a family.
Yesterday, we also had an enjoyable visit with Julie, our specialist nurse from Cheethams, it was great to catch up with her and Ade gave her a full update on all the medicines Phoebe is taking along with a chat on general progress and wellbeing. Julie was really happy with the progress Phoebe is making…but not as impressed as Phoebe was when she realised Julie knew who Iggle Piggle and Upsy Daisy were!!!

In general, Phoebe is doing remarkable, she is such a happy girl and is communicating with us about how she is feeling. Phoebe is able to tell us when she feels sick or if her tummy feels unsettled and this helps us to prepare a little easier if she is feeling unwell.
Each day, Phoebe’s appetite changes but just recently she doesn’t seem to want to drink much tea, which is unlike her. We continue with the machine feeds which seem like every couple of hours at the moment and Phoebe seems to tolerate them some days better than others. We remain steadfast with regular feeds in the routine of re-training the stomach to digest more. Some days Phoebe will have a build up of milk which is difficult for her to digest meaning she can be sick in the later evening, overall she does well and its important to just take each day as it comes.

We travelled to Manchester today for our appointment with Rob, he is so happy with her progress to date and doesn’t wish to change any treatment at present. Phoebe on the other hand was not so pleased to have to take all her clothes off to be weighed this morning the scales showed as 8.32kg. Phoebe has lost a tiny bit but nothing that concerned Rob too much. Lynette our dietician came to see us after our appointment in the clinic and is happy for us to continue with everything we are doing for another week. It is a constant stream of meds and feeds throughout the day and we are mindful to try and space these out as much as possible consequently, frequently run out of hours in the day!!! We count our blessings to just be at home and continue along this journey with Phoebe enjoying the time together, taking one day at a time.

The troops have been brilliant again, coming over to the house and sharing each day with us, they are such good company and enjoy just being at home with us, helping out by looking after Phoebe and keeping our home clean to avoid Phoebe catching any infections. We truly recognise our lives are full of blessings…Thank you so much for your constant love and support.

Phoebe has enjoyed spending time with her grandparents and busied herself making them pretend baguettes and icecreams with her new toys, she loves them!! Thanks guys for all your tips and advice regarding toys….we are going to play with some new memory cards tomorrow and will let you know how we get on!!

Gary is joining us for breakfast tomorrow and we look forward to catching up..so better get to bed ready for an early start….

Some special mentions tonight…..

We ask that you all keep ‘Sonny’ in your prayers tonight, he is a little boy who was on the unit at the same time as Phoebe. We have spoken with his mum and dad, Sian and Neville today and they have explained that he is in intensive care. We ask the angels to be by their sides giving love, comfort and support through these worrying times. We send all our love and wishes for a speedy full recovery for you Sonny xxxx

Welcome to all our new bloggers joining us this evening especially to Donna who is a great friend of ours and has eventually found us here, she was speechless when she finally saw the blog. It was great to catch up with you this evening. Bradley is never far from our thoughts Donna. xxxx

Another friend who I caught up with on Facebook…gosh it is addictive when you start on it!!. A special hello to Gina, Anthony and Chloe. Special congratulations to Gina and Anthony who are getting married next year and it was lovely to have the brief catch up feel all the excitement about all the plans….Welcome to the blog and its lovely to have you here!!

Special wishes and calm pain-free thoughts go to Sheena…and Richard too who are expecting their second addition to the family anytime now, we are thinking about you and look forward to hearing your news….!! Enjoy the gas and air hun!!!

To all the Bloggeroonies (children - for you new bloggers!!), we hope you are enjoying your half term break and we look forward to the Summer when we can see you all!!!

A Special Well Done to Lisa (Gary’s partner), who has registered her blood to become a Bone Marrow Donor, THANKS…we are proud of you!!! Lisa will be putting a little piece about becoming a donor in her works News Letter for Ernst and Young, hopefully we may see a few more people registering and even join us here on the blog!!

So…plans for tomorrow are finding the camera and adding some PICS here, pop by again tomorrow night and hopefully we will have them uploaded.
For Sonny and Family….with love

‘Somewhere there’s an angel…. Just waiting in the wings for you. Let your heart listen to the comfort, the wisdom, and the wondrous things your angel is hoping to bring you. Believe, and receive this blessing….and you know that if you do, there will be times in your life when your serenity is sweeter, your understanding is greater and your joys are simply out of this world.’

Douglas Pagel

Rest easy…..
Much love
Lynn, Ade, Phoebe and Spirit Eleanor xxxx