The Best Christmas Present

Samuel had a wonderful first Christmas at his Uncle Grant and Auntie Sarah's (my sister) home where our family celebrated Christmas again this year. This Christmas, Shirley proposed that we only give a present to one other family member, and that the present should be - at least partly - handmade. I don't think Shirley realized how much work she was making for herself in our family at least, as she ended up helping all three children make name signs for their 3 cousin's bedroom doors out of coloured mosaic tiles. And I have to confess, she did buy the parts and do most of the work on the handmade necklace that I gave to my mother....choosing necklaces and making homemade gifts.....they're tough enough on their own but when you put them together!

With two sleepless nights back in hospital just prior to Christmas (see earlier blog), and then the rush to get presents bought, wrapped and food prepared for Christmas day, Shirley's body decided it had had enough and reacted as it normally does when she's exhausted - Strep throat! So she's been in bed since Boxing Day with fever, agonizingly sore throat, vomiting, headache and inability to do much else but sleep. By the time we realized what it was, all the doctors' surgeries and most pharmacies were closed for the holidays, so we called our good friends up in Samuel's Ward 26b who were happy to help out with a prescription and enough antibiotics to get Shirley through the two-day public holiday. They understand that it is in Samuel's best interests that Shirley recovers from this illness as quickly as possible so a) she doesn't pass it on to Samuel, and b) she can get well enough to share the load in caring for him, as it's a lot for one of us to keep up with all his needs for an extended period. Fortunately my family have come to the rescue and the girls have gone to stay at my sister Sarah's place for the last few days while Mum has stayed here with me and taken over the household chores so I can focus on caring for Samuel and Shirley ( I'm still getting used to having family so near that we can call on them at times like this when we need help, it would be tough living anywhere else right now). We'd value your prayers for her, it's really knocked her this time and she isn't responding to the antibiotics as quick as she usually does.

I had a scare today about half an hour before I disconnected Samuel from his TPN, I noticed blood running back inside the line the opposite direction to the flow of TPN. That's never happened before and either means the pump isn't working properly or the positive pressure connector that should prevent any backflow is faulty. I got on the phone to Biomed who are contracted to provide all our TPN needs, and we figured out that it's probably not the pump, so it's probably the connector which get's changed every time we hook up the new bag of TPN. If any other TPN families out there have experienced this before, I'd appreciate your advice as it seems to be a bit of a mystery to Biomed and our TPN specialists at the hospital. Hopefully all will go well when I hook him back up to his new bag in an hour, and it was just that 1 faulty connector in 10,000 that slipped through quality control.

We didn't send out a Christmas newsletter this year, as we figured there's not much more to say then what's already been said in the 100 or so blogs over the past 6 months. If you read this blog on a regular basis then you probably know more about what's been going on in our lives this year than you know about most of your other friends. You'll also know that 6 months ago it seemed almost too much to hope for that Samuel would still be with us this Christmas, let alone living at home. That is the greatest present we could have hoped for this Christmas and we're so grateful to you all for sharing from near and far in both our joys and our sorrows during 2009.

Here's a special New Year's message to you all from Samuel. Happy New Year and we look forward to bringing you news of Samuel's progress in 2010.

Francis

The Eve of Christmas

Sam is coming home this afternoon! It will be lovely to be back again.... to wake up tomorrow the 5 of us. It is strange to see him with 2 legs - his right leg has always had a PICC in it and bandaged, but he came back from theatre with his 2 legs visible, but his right arm bandaged. He spent the afternoon recovering (vomitting, sleeping etc) but had a great night and woke up gurgling and happy and thankfully waving his arm around like normal - even though he has a line sticking out of it.

Merry Christmas - off to make gifts with the girls.

X S

Back in Starship

Last night at 6 pm whilst doing Sam's TPN Francis realised that Sams PICC line was leaking... on closer inspection it was completely snapped below the locking device, about an inch above where the line goes in to his foot. This is a major risk of infection, so we quickly clamped it and I bundled him off to the Emergency Department.... where I sat from around 7pm to midnight.... then I was sent back to 26B... but this time to a twin room, sleeping on a squeaky lazy-boy. So as I lay there listening to my new room-mate (Mrs Snore-a-lot!), I listed the many things to be grateful for, number one being that tomorrow Sam would have access to a top-notch surgical team who would give him a new PICC line.

I'm writing this to fill in the time whilst Sam is in theatre. It never gets easier saying goodbye knowing he's about to have a general anaesthetic and having a procedure. Francis bought the girls in for lunch and we look forward to hopefully seeing Sam soon - it should be a short procedure, and they are aiming at putting a new PICC line (The one that we give him his TPN in) in his arm. There is a chance that they can't find a good vein so he may end up with a Hickman line.... but will tell you about that later if it's necessary.

I will stay in with Sam again tonight (Francis has brought in ear-plugs) and hopefully we'll be home on Christmas Eve.

Go Sam, go surgeons and team ....

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!

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

Quite a day!

Today we went to a Christmas party at Rainbow's End (Theme park) hosted by the 'KIDS Foundation' (Key Immune Deficiency Support) charity. They have taken Samuel, and our family, under their wing offering all sorts of support over the past 6 months, including weekly visits at hospital, car parking vouchers, holiday homes (we've booked one for mid-Jan) and an array of other help. So to attend their much raved about Christmas parties was a real treat. We had all day passes to the park and at 2.30 there was a sausage sizzle, face-painting and Santa came with a hoard of gifts for all the kids. The girls had a great time with their Daddy and I arrived around 2 once Samuel was free from his 2 pumps as it's just too hard getting him out and mobile in the morning. The girls had decided which rides I was to go on with them and not wanting to be an old fuddy-duddy I obliged. The 'Fear Fall' was horrendous and afterwards Jasmine wouldn't walk with me as she was 'so embarrassed' by my ear-splitting screaming-it was awful. Thankfully Candace chose a rather sedate princess/castle type ride!

It was a great day out and a lots of fun. It was lovely to meet up with other families that we bumped into in hospital and to see their kids progress and to know these people really get what life is like for us. We're constantly amazed by the care and time people put in to encourage families like ourselves - we are so very grateful for this charity and also deeply humbled at the time, resources and care they share with us as a whole family - it is awesome.

We came home, mixed up some baby rice and had Samuel's first momentus 'solids' moment.

We gathered around him, held his hands and prayed, thanking God for Sam's first food, for looking after him and helping him get to this point - Sam just cooed and grinned... then he gobbled! He seriously loved the food and didn't gag or choke and was playing with his tongue for atleast 30 mins later with a look of, 'come on... let me have some more'. But alas, he shall have to wait 'til tomorrow. So that was 5 hours ago and he's been really happy and sleeping, with no pain or vomiting... all good signs!

Tomorrow Sam will be 6 months old! So it's kind of his birthday and we plan on a day at home with some friends coming for a bbq in the afternoon and probably a cake for us and 1 teaspoon of baby rice for Sam - I will try and get a candle in it!

So it's been quite a day and 2 exhausted little smudged butterflies collapsed in bed tonight and one little chubby happy boy is sleeping next door. 2 tired parents about to head to bed thankful for a day where our son ate for the first time - a day we never thought would or could happen. Thank you Lord.

Sleep well. X

Food Glorious Food!

Samuel had his weekly outpatients appointment at Starship yesterday. He will be 6 months old on Sunday and all his 'numbers' are doing really well. His biliruben is again in the 80's and his other liver indicators are dropping and kidney function is normal, so that is great. The Dr and dietician decided to up Sam's milk (which goes directly into his jejunum) to 10 ml/hour for 2 days, then we are to try him on 1 teaspoon of baby rice! Can you believe it??? Real food,...... oh it's so exciting! So tomorrow is his big day and another experiment but we're up for it! He now is taking 200 mls of pepti-junior (milk) per day and if he was a normal child he would be on around 700 - so it's actually really amazing. So it's 2 days with baby rice, then we are to try him for 2 days with 1teaspoon of pumpkin. Being bright orange they're hoping it's easier to follow it's path to see if it just stays in his stomach or makes the journey through his gut to his iliestomy bag. But we're hoping most of it will be absorbed on the way.

The last few days we had noticed that there was more air in his ilieostomy bag - not just the faecal matter, but was also blowing up like a balloon. He has had very little air asperated from his stomach (via NG) so when he pulled it out we just left it out to see what would happen. He seemed to cope fine without it and is burping himself a whole lot more - big loud rumbling wet ones... but we're thrilled! But the NG has gone back in so we can monitor what is happening to the solids.

The girls have been so great with Sam and really embracing him and his needs - it's lovely to see. So we're very thankful to have been home a full 2 weeks and for the progress Sam is making. We wake each day and thank God, Sam's maker for sustaining him and us and asking God to be with us in whatever the day holds. It's been a lovely relaxing and fun time - the Christmas tree is up, mince pies in the oven and girls excited about the season, as are we.

Best wishes