Sunday, February 9, 2014

Its been a while!

Um, Happy New Year!  Yes the blog has been silent, as we have had a restful and fun family time over the Christmas holiday period.  The girls went back to school last Monday and Sam started again at kindergarten, so routine is starting to take over again.

In brief:
Christmas:  Great 12 days at Maungawhai, inspite of Sam having a UTI.
Hospital: Jan 4 - 7 with a stubborn UTI, but we managed it for 10 days doing IV abx at home.
Quick Escapes: had a few days in Tauranga with friends, then long weekend in Rotorua with cousins.
Summer Fun:  Lots of visitors/family/cousins popping in to stay/play and hang out!
Poop Recycling: Working a treat!  Sam lies their patiently while I do my thing with the syringe/catheter and then a few hours later he is elated as he comes running with the announcement he has done a poop and needs a new nappy!
Needs Assessment:  A necessary part of having carers helping out, which happened in mid January and took a lot of time to sort out... again...
Staff:  Two night sleepers are moving on to med school in Dunedin and one to a nursing job at Starship, so I have been recruiting and have found a lovely replacement who starts next week.

Sam is now booked to attend Kindergarten 2 mornings and 2 full days per week - it's so good for him and he loves the stimulation and friendship.

Surgery:  March 5 is pencilled in for his big surgery - ilieostomy reversal (joining up small and large bowel for the first time since it was severed when he was around 1 day old!).  It has huge implications for Sam and his health and we are amazed and delighted that we are in this position of such profound progress - I can't help but smile and thank God for the daily miracle of life.

Next week:  Please think of Sam especially from next Saturday 15 Feb - Thursday 20 Feb, as he is staying at home with a nurse, whilst Francis and I whisk the girls off to Australia for a break!  Summer holidays are not that much fun for the girls - I find them stressful as the girls are wanting to do fun things, but the beach is no fun for Sam as he can't get in the water (can't get CVL wet) and he hates the sand etc... so although we had a good holiday, most of it was one of us with the girls having fun, the other with Sam having fun.... so through the kindness of friends and Francis' airmiles we are heading to the Gold Coast for some fun!  Francis and the girls will stay on for the week, but 4 days is long enough for my heart to cope without Sam and with the practicalities and limitations of arranging 24 hour cover.  We wouldn't go for one second if we didn't trust the amazing ladies that love Sam as their own, and have the skills and care to look after him.  He hopefully will be distracted by his usual routine of full days at kindy and dvds!

The last few nights Sam has not been great and this morning he spiked a temp and his urine is dodgey again... so tomorrow I will head in to Starship for his monthly blood tests and hopefully get some extra meds on board and him stable before we pack our bikinis!

I leave you with some cute/entertaining photos of our little guy - some are with/wearing Christmas gifts, one is at the kindy Christmas pageant which he was fed up with (he stayed like this for a 3 song medley - always one in every group right?) and some are at Christmas parties with famous faces (for non kiwis- that is Valerie Adams multiple Olympic Gold medal winner)!

Love to hear how you are doing and what is going on in your lives.

Very best wishes and thanks for walking, watching and praying with us we embark on 2014.  We are certain that our God is bigger and greater than anything we will face and that fills us with joy and hope!.

X Shirl




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