Got the moves

Well I'm having too much fun to get around to blogging these days! Christmas is coming and all is happy and lovely in the cottage.

Highlight for the girls was that school finished on Friday with a final assembly at our local cathedral, where Candace received the class award for academic achievement.

Highlight for Francis and I was a surprise breakfast with friends on Saturday morning to celebrate Francis receiving his final mark for his Masters of Science in Development Management and obtaining an overall merit pass for the course.

For Samuel, this past week he seems to have really developed his motor skills, with arms and legs much more active with attempts at rolling slightly to one side. He is also awake for much longer periods - up to 4 hours at a time and squawking and babbling really loudly.

If you can view the video below you can see we have rather rigorous physio sessions with him, but he was not harmed in the making of this film! The girls continue to be very hands on and just adore him.

This week his semi-digested milk going in his GJ was increased to 12 ml/hr and we are increasing his food to 2 teaspoons per day. We have been playing around with one of his drugs (omeprazole) which he seems to have started projectile vomiting which is a disappointing turn.... but we have halved his twice daily dose and giving it via his GJ directly into his intestine to see if that is better and still makes his stomach less acidic. The verdict is still out on that.

On Sunday we got really brave and took Samuel out for the first time in the morning, whilst still on his TPN and milk feeds. So that meant we took out a portable pump stand, 2 pumps, TPN bag, plus milk bag, plus his oxygen tank. The girls were in our church's Christmas service and Sam has been keeping so well we felt it was time to try going out as a family.... plus we so wanted all the wonderful people from our church (many of whom we hardly know) that have faithfully prayed for him to meet him in the flesh. It was a great first time out with him and totally do-able, it was really special to be out all 5 of us and to be celebrating Jesus' birth with our new found friends at church. Highlight for the girls was having both Mum and Dad at church with them. Highlight for me was to see people that had faithfully read the blog and prayed for him holding his hand and engaging with him as they have come to know him via his blog.

This week reps from Auckland Health Care came to talk through and arrange respite carers for the new year. We have been approved 28 hours/week being paid by Taikura Trust (government-funded trust for high-need home-care patients) from January. It was a really positive meeting and it will be great to have half-day help Mon - Friday in the New Year. It will free me up to do house work and to also be able to take the kids to school etc. It also means there will be another pair of hands to ensure Sam gets more time doing physio exercises. He is definitely getting a stronger neck, but due to his complex stomach arrangement (tubes etc), 'tummy time' is really hard for him and yet he needs it to develop his other muscles.

I had a bizarre conversation with a lady at school this week who was intrigued as to why, when we had knowledge of Samuel's health issues in-utero we hadn't terminated. She wasn't meaning to be rude or offensive (although I was shocked she could ask this whilst looking at the smiling baby infront of her!) but genuinely intrigued why we had knowingly bought suffering into the world - for him and for us. I explained that we were followers of Jesus and we believed that God was the author of Sam's life, not us.... and that we didn't have the right to end a life because we felt it could be an inconvenience to us. I also said that we have a duty to protect life and now looking at our baby in our buggy, to think that in our society I have the right to have ended that was too abhorrent to think about. To me it also highlighted the perception that to have any kind of difference or challenge to be viewed as completely awful, negative and indeed suffering. I explained that the joy and lessons we had gained from his short-life and this journey so far meant that my family is so much richer because of his life. It was one of those conversations you can't quite believe you're having, but glad to be a part of maybe helping this woman view life around her, and indeed hers, from a different perspective.

Christmas day will see us doing our usual traditions - stockings in bed with the girls, cooked breakfast whilst reading the Christmas story, church then family lunch with Francis' family. It will, without a doubt be a memorable Christmas, full of thanksgiving to God for reaching out his arms of love by giving us Jesus, and one where we rejoice with our family for how God has been so evident with us all as we've walked alongside Sam.

Wishing you all times of reflection and joy with ones you love.

MERRY CHRISTMAS!