Monday, November 25, 2013

Not been a great month

Hmmm, so Sam has had back-to-back urinary tract infections since he's had his refashioned bladder surgery. It's really disappointing for all - especially Sam, as he has to cope with the pain and discomfort and extra antibiotics on board.  We had all hoped this change in his drainage would mean he has less utis, but sadly it's the opposite.  It's now looking likely that oral antibiotics aren't enough to keep the bugs at bay, so the team are mulling over how best to treat them, with input from Infectious Disease and the surgical team.  This meeting is to take place on Dec 2, the same day as he has renal ultrasounds and a surgical review.  This multi-team meeting is too far away for Sam, so we are awaiting input on whether we have to have daily trips in to hospital for a few hours each day to have I.V. infusions.  This clearly would be preferable than a full-on admission, where he is open to hospital germs if just hanging about passing time til the next infusion.

Last week we visited Starship twice - one day for gastro clinic and one day for surgical review.  We chatted through the possibility of joining his bowel back together, getting rid of his ilieostomy and seeing how he copes with pooping via the normal route.  This was just a discussion with more details and input needed from surgical.  The previous week we had an immunology clinic, which re tested him for various allergies.  The good news is that it shows he is now no longer allergic to soy, so with this new info, we are now tempting him to eat by playing with soy yoghurt and ice cream - rather expensive 'play toys', at $2 for a teeny tiny pot, but hey, if it can open him up to tastes and eating it will be worth it.

So a bit of a tired, 'bah humbug' blog today - with uti's Sam wakes a lot more with vomitting, so we're all a bit weary - to the outsider they would think Sam was just being naughty - we know that he always screams/hits/gets naughtier as he copes with the pain.... so if you see a handsome, smiling but slightly naughty boy, it could just be Sam.  It is a challenge allowing him space to cope with what he has to, and guiding and training him up in what is appropriate.  We are learning (& failing plenty) on giving him coping strategies that isn't just medicine!

X S

Tuesday, November 5, 2013

250 km later......

Woo hoo - what a fun weekend was had by us up in Auckland, at Team Sam headquarters and the Auckland Marathon! Family arrived from all around NZ and Australia to take part in the event that has taken a lot of their time and sweat and energy this year - to complete either the half or full marathon, running for Kids Foundation, the charity that has supported us since Sam arrived to change our lives forever!

Tonight all smelly sneakers and proudly worn running bibs have boarded planes and are back in their original locales - tis a tad quiet here now and the girls were rather sad to say goodbye to everyone. With so many Aunties and Uncles around, it was rather funny on the last night when Sam turned to Francis and said, 'Uncle Dad!'.

8 of us ran, but the support crew was just as vital, with Francis sorting meals and keeping the home running and sorting out Sam.  Kylie was photographer and support crew co-ordinator, as she hung out with the girls from 5am on the big day, waiting for us all to get over the finish line.

I am so proud of everyone - Eleanor was a legend and ran her first full marathon on a months training (she did some other things too, but 'what happens in Vegas, stays in Vegas!'); Elaine and Janice also ran  their first full marathons - both with great times and on top of being busy full time Mums - legend!  Jude did an amazing time, again on very little training...and at her age!  (I have so much power as writer and editor of my own blog!).  Jason & Raewyn did P.B's - using running jargon/acronyms means they are becoming serious athletes; Selwyn looked hot in his new running shoes and inspite of waiting around a bit for the slowest in the pack (that would be me!), he hit the 2 hour mark!  And then there comes 'slow and steady' with the worst time of all but someone has to come last!..... but I am just glad to complete it as a month ago I was going to pull out due to injury.

After the race several of us talked about how at times we were going to give up, but as the pain set in we thought of the pain that kids like Sam endure and we kept going.

This blog is/was created to share info on Sam, but my brother Peter has inspired me so many times along the way, as he has faced chronic debilitating health issues over the past years.  It has been a tough month for him, Jude and the kids, so although Sam was the catalyst for the run, we also ran for P.A.C. Man - our eldest brother who has his own huge challenges to face at the moment in Dunedin hospital.  It was a great time to be together, fun meals shared and hours of talking and laughing, but also many moments of reflection and tears as we thought of our brother struggling in hospital at the moment.

Kylie (sis'n'law) shared about a family that had a child with health issues and their perspective and it really touched me, so I'm going to paraphrase and use below as it rang true with me:

When we were pregnant with Sam and the obstetrician was talking of termination, they only kept telling us of the hardships we would face, the stress and heartache.  They never said, 'imagine how much joy your little boy will bring your whole extended family as he faces his challenges with courage', 'imagine how much patience and kindness you will have to learn as you care for him....and how that will have a positive impact on your parenting of all your kids,' 'imagine all the kindness and generosity you will receive from total strangers and people that are watching you, 'you need to consider how you will be challenged to do things you would never have contemplated before his arrival' etc etc etc....

I doubt that our family would have been together running as a united team if it hadn't been for the gift of Sam. I hope that as I continue to grow up I will not be scared of challenges or surprises, but be able to trust that God has a purpose for allowing it..... I know without a doubt that that has always been the case.

So with a full heart and tired limbs, I'm off to bed.  Thanks to you all that have supported this run - online and postal donations is up to a total of $3300 - that is truly amazing, and we are so very very humbled and grateful.  I leave you with some photos of the run - pre run feasting, getting Sam ready for his 'feast', Support Crew and Team Sam!
Kai Time

Hooking up

Great Support Crew!

We did it!

X Shirley