6 month & 6 year milestones

Last Sunday we had Sam's 6th month birthday! It was a lovely day with friends, cake, bbq and hanging out at home with each other..... life's such a team effort and we are so meant to get through with the support and encouragement of one another, and our last 6 months has been testimony to that.... The photo hopefully says it all.

Well the past week has been a good one - just plodding along with little steps. Samuel had his weekly outpatients appointment on Wednesday which saw his milk increased to 11 mls an hour via his GJ tube. Currently his NG tube is only being used to administer medicine twice a day - otherwise it is redundant as Sam is now burping well on his own and the fluids aren't building up in his stomach but going through his system. So it was decided to remove the NG and to try

giving him his omeprazole mixed in his 1 teaspoon of food. Well we tried... and it failed in dramatic 'crash'n'burn' style. The medicine clearly made his food taste vile and Sam was gagging and fighting with his food, which meant he wasn't getting enough of his medicine, which meant that his stomach was getting very acidic and he started vomiting up bile with a pH of 2 - which is very acidic. So after 2 days of persevering we decided that it was more important for Sam to enjoy eating his food and to put the NG back in so he could safely get all his meds. So it was disappointing, but not earth shattering. It would have been nice to see more of his face and for him to have 1 less tube to pull on, but hey, he's much happier and back to his same old self and enjoying eating again.

His recent blood results showed he is vitamin A & D deficient, so rather than give him drops (which could affect his damaged kidneys) we've been sticking him outside in his speedos - hooray for summer! Well it's actually just his nappies, but when he's sunbathing we call them speedos - they have multiple functions!

This week he has been to the girls end-of-year class picnics in the local park and had lots of 'Nana time' as Anne has been staying. Rod (Grandad) was here too, but went with Francis and the girls for 2 days down to Rotorua for a rather special trip. Francis recently found out he was eligible to receive a scholarship from the Te Arawa trust (a trust that is seeking to encourage Maori people in education) for completing his Masters. So on Thursday, Francis along with 7 other recipients, attended a mayoral reception in Rotorua. His proud Dad, 2 delighted girls and his brother attended. I was sad that I couldn't go - it's just too hard still to plan and transport Sam with pumps etc, but felt proud from my little world back here. Francis started studying toward his M.Sc in Development Management a week before Candace was born (6 years ago) and completed his dissertation whilst Sam was in hospital during the past 6 months. He studied whilst working full-time and travelling often, through 3 international moves, learning 2 languages, a sick son and being a Dad and husband! So it was fitting and wonderful to see his achievement recognised.

I am struggling a little with the lack of freedom and how restrictive life has become... and had a moment or two of my own little 'pity-party' - which I loathe with a vengeance as it's so counter-productive and I hate how selfish that is as I'm not even the sick one struggling or in pain, then I get grumpy with myself..... so after a little 'talking to' I snapped out of it! Our home-help package is still being established but even when it is up and fully running we've already been told that the care-givers are not allowed to do Sam's TPN as it's just too risky. So we plan and work around having to always be here at noon for his hook-off and from 5.30pm every day for hook-on. I adore being with Sam and looking after him, but struggling with feelings that sometimes I just want to be able to choose to not be here... and that can't be. Maybe it's just knowing that something is out of reach that I want it more....... maybe my middle name should have been Eve!

Today Francis has taken the girls to yet another kids Christmas event (I am happy to be at home this time!!!) and this afternoon we are looking forward to going out as a family to visit a family we met on the ward. They have a delightful little boy who is about 15 months old and was in Starship for over a year of his life. They live very near by and it will be lovely to see him and to spend time with his parents who inspire us with their commitment to their little treasure.... the girls can swim in their pool whilst we catch up and compare notes. This journey is an adjustment for us all, but especially weird for the guys I think. I've been a stay-at-home Mum anyway, so the adjustment is minor compared to Francis who has been thrust into a home role, caring for Sam and not working. It will be great for the guys to chill out together.

So we continue to be so thankful for the beautiful corner of the world we find ourselves living in - with views of the sea and sun shining in abundance. For Sams continued good health and just the joy of being together - the simple things in life are so wonderful and we thank God each day.

Enjoy your weekend

Shirley