Hi there
As it’s been some time since I last sent an update out you have probably guessed that all is ptty well in the Hartley household.
Both Luke and Joshua are on extremely slow steroid tales (but critically they are coming down) and this is going well.
Luke still has the stoma but the output has still settled. We have been able to reduce his overnight TPN (and we actually get Saturday night off!). He is loving being back at school and isn’t showing any signs of being too tired at the end of the school day. He is absolutely Mr. enthusiastic and last week joined the school orchestra in second violins.
Joshua is doing well at college and seems to be on for staying on for another two years. Despite only making about 60% of lessons with his heavy commit to various hospitals (St Thomas in London for two days every two weeks, GOSH for a check up every 6 weeks and Southampton General for Immugloblins every 3 weeks, plus eye clinic visits etc.) he actually got 100% in his hardware course – amazing!
Nathan and Daniel are well and Nathan in particular is growing at an amazing rate.
And Mum and Dad can now occasionally get out and start to restore a social life!
Blessings
David
Hi there
Another historic day as Luke went back to school (again!). It was hard to express just how excited he was about this and desperate to get back. Initially he will only be going mornings as he builds up his strength again. Hi ‘output’ is still up and down and we are still some way from having an idea when the stoma can be reversed.
An emotional and rather wonderful day:)
Blessings
David
Hi there
Yesterday was a special day. Daniel became a teenager. Whilst that is special in its own right it is extra special for an XLP affected boy – as without a bone marrow transplant few make it into their teen years…… he is doing really well.
Luke has now been home for just over two weeks and is loving life back home. We took him in to see the gastro consultant on Friday morning and he was delighted with the progress. It was quite stark in that either with new treatments they work or they don’t and they have clearly worked with Luke. So we were even able to reduce the TPN by a quarter although for our own sanity it is still going over 12 hours. Luke bristles with life and fun and we are very proud of him.
Blessings
David
Hi there
Luke finally came home yesterday – he was elated as we all were.
It has been another difficult 2 months for us , but we are just grateful that he made it back home. He has been incredibly brave and up beat through all this – a true inspiration.
Along with Luke arrived mass of extra equipment including a NHS provided fridge to keep his TPN in! We are also being supported morning and evening by nursing staff to ensure that we set the TPN up correctly – not sure if we get a certificate at the end….
Blessings
David
PS – Would you please consider making a donation to the charity we run to help other XLP affected families from around the globe? Because of Luke being in hospital we have not been able to put the fundraising effort into this important venture for the last few months – and we need to increase fundraising urgently if we are to shortly commission the next wave of medical research into this horrible condition! You can donate in £, $ and € through our safe on-line hub with the Charities Aid Foundation which you can access through this web page:-
http://www.xlpresearchtrust.org/donations.asp
Thank you!
Hi all
Luke should come home on Tuesday after 2 months in Southampton General Hospital. He has really been very well for all of this year and so there seems to be no reason for him to stay in.
He will however becoming home on ‘home TPN’ so both Allison and myself have now acquired another IV skill – and the NHS will be dropping off a fridge on Monday as this is needed before the 2 week supply arrives on Tuesday! The TPN will run for 12 hours over night.
He will also be coming home with the stoma and at the moment there are no plans to reverse it. His output continues at around a litre a day (some days better than others) but they seem happy with this as a level and have told us it will just take time (although no one is saying how long) for everything to come back together.
Luke is brilliantly well in himself and has amazingly taken all this in his stride. He has now recovered all of his weight (indeed he is now the heaviest he has ever been) and all his bloods and other measures are in the ‘normal’ range and stable.
Allison and myself are really looking forward to Luke coming home but there is a little trepidation – plus I have volunteered to set my alarm for 3am every morning to give him one of his drugs….but we really do want us all back together again.
Thanks for your prayer support
David