Transplant Day +96 - Recovery at home with positive steady progress...

Good Evening Everyone,

How is everyone out there? Hope all is well and thanks for joining us this evening.

Well since we were last here, Phoebe has been well in herself even though she has had a tough couple of days coping with the Norovirus and all the calamities that go with it!! Phoebe enjoys playing and walking around the home whereas after her tube feeds have finished she seems to struggle with feeling constantly sick and we all know how it can affect us.

Monday’s glorious sunshine enabled us to get out and as it has been some time since Phoebe’s feet were measured we felt it was important to have them checked and a change of shoes. During her time in hospital, Phoebe mainly wore her slippers when she was able to walk around, as we returned home we have tended to pop her shoes on throughout the day to help strengthen her feet again. Mum and I had a walk into town for a visit to Brassington's Shoes in Longton, it is like walking into a time warp of the 1950's! the service is always excellent and we have always brought our childrens shoes from there and an almost guarantee Phoebe would not come into contact with any children there first thing on a Monday morning!!

Now Phoebe is more independent and confident being at home, we look back at our time on the Transplant Unit and wonder how we kept her entertained all those weeks whilst being attached to her numerous machines and confined to her cot!!….thank goodness for the troops valiantly travelling up to Manchester each day. How we count our blessings for the amazing support of our family and friends who continue to surround us with their love and time. Ade and I look forward to the coming months where our lives will hopefully return to normal, it will be great to join the regular outings with our friends and their children too.

And so to our weekly hospital visit to Manchester….the day started quite well being completely organised and ready to leave a little early which is most unlike us, with everything packed but the kitchen sink, Ade was about to pop Phoebs in the car when she said her tummy was aching having mentioned this to me a little earlier. Just as we were about to leave we saw what she meant!....three changes later and finally leaving the house with just under an hour to get there, I asked for a little help from my angels to keep the M6 clear and bless them…we had a smooth run!!

Finally arriving we were greeted by Kirsty who was covering for Sarah, it was nice to see some of the nurses on the ward again as our appointment took place in the treatment room. It’s always good to see Rob and he was really pleased to see how well Phoebe is progressing. Ade and Rob had a good chance to talk about the Norovirus and ask questions as to how long we can expect to see this in Phoebe’s blood tests. There is no real timescale but we hope that this will be cleared soon. Over the next few months we will see a reduction in Phoebe's medication as her lymphocytes rise in number thus enabling Phoebe's immune system to take over and hopefully fight off viruses successfully herself.

Consequently, until the Norovirus and Epstein Barr Virus clears and an increase in Phoebe’s weight our appointment will continue to be on a weekly basis. We await the results of the bloods taken today to see if the EBV virus has reduced with the treatment Phoebe has received over the last couple of weeks and so far we expect to head back to Manchester again at the weekend for another dose taking no chances with Phoebe’s low immune system.

All in all, Ade, Phoebe and I continue to take each day as it comes, and continue to enjoy watching Phoebe developing remarkably well considering everything she is coping with.

A few messages for you bloggers our there….

A special mention to Don, thanks for your wonderful comments and positive feedback, it’s lovely to have you join us here at the blog and we look forward to catching up in the near future.

Don’t forget Saturday evening at the Tollgate folks, it will be a great night, we have been promised some great music from the local band Crysis and with your company it will be a great night whilst raising money for a good cause too…all proceeds to The Donna Louise Hospice.

To Angela, thanks for your lovely e-mails, I apologise for the delay in responding and will look to catch up with you in the next couple of days.

Sandra…thinking about you…
Will call you too in the next couple of days. Much love xx

Thank you too for all the cards, gifts and well wishes we have received, it leaves us truly humbled by everyone’s kindness.

A special hello and Birthday wishes for Owen who celebrated his birthday this week….Hope you had a lovely day Charlie Farley!! xxxx

Tomorrow is the funeral for Uncle Frank and I just want to take the opportunity to thank everyone for their love and prayers for the family. Bless you xx

Tonight, I dedicate the angel blessing especially for Uncle Frank, may God bless you and the angels guide you on your new journey....for Auntie Winnie, Margaret and all the family. All our love and prayers.

One day when we face these beings of light who have guided our path and done God’s work in our life, we will wonder how we ever
overlooked their presence.

Much love, rest easy folks
Lynn, Ade, Phoebe and Spirit Eleanor xxxx