Wednesday, April 29, 2015

We have a weird clothes line!

It was a long weekend here last week and as I headed back to work someone asked me what I had gotten up to.... so I flicked through my phone for photos to help jog my memory.... so with the help of these I will do the blog tonight to illustrate just a 'normal' kind of weekend.

Photo One:
A Family get together and  an impromptu 'massage train' was started with a genuine ache and a helping Auntie... as you can see, it was impromptu and participant heights not considered.  But that didn't seem to bother Sam who joined on in and we weren't sure if Uncle Eddie got pick pocketted or a bottom massage!  This photo just shows Sam as he is - full of joy and not wanting to miss out on anything.

Photo Two:

Just a normal day at home catching up on household chores and the usual washing... although our washing is truly bizarre.  I think Sam's washing is probably the dullest of jobs that I have to do three times a week - washing out and sterilising bile bags (he uses 3 each night - 2 collect urine and 1 collects stomach juices), cleaning GJ connectors with a knitting needle (they don't come with the knitting needle but had to figure out how to get them clean) and various containers.  I took this photo as I was in the garden and looked up and it hit me how weird the washing line is compared to my neighbours.

FYI, Sams leg ultrasound exam has all come back fine.  His legs are fine, although yesterday they were green as he found a felt tip pen when I wasn't looking and in the flash of an eye he resembled 'The Hulk'.

I was talking to our community nurse and wondering if we shouldn't be giving Sam some milk via his GJ tube during the day.  He is not concentrating well at school, especially in the afternoon.  It dawned on me, that unlike those of us that eat, he has no extra nutrients or calories going in to his body from 7am when I hook him off until 6 at night when I hook him back up..... so this is something we need to look at so we can see how it will work in practice.

Friday is Sams first 'mufti-day' at school and the theme is 'Animals', so he is going to go as a shark, as he has a shark dressing gown that he loves.  So that was easy - none of this up til 2am creating some paper mache wonder like with the girls - boys seem a little more straight forward - I can do a dressing gown.  I will wow you with his cuteness next blog.

Friday is also the day that Francis comes home so we are looking forward to that very much.  Sam has been pretty good this 2 weeks, inspite of missing his Dad, but daily skype chats makes his absence not as hard as previously.  X

Friday, April 24, 2015

'Is it morning yet?'

'No it's 5am, Go BACK to SLEEP!'.  This has been how my day has started every morning this week. After a 2 week break Sam is so excited to be back at school.  He wakes around 5 calling for me to get him up so he can get ready, I shout back at him from my bed to go back to sleep because it's still night time and dark.....'hmphf' he groans and silence for about another 10 minutes and the conversation is repeated, several times until I give in around 6:30 when I need to get up anyway.  I am so delighted he loves school so much.  I don't think it's the academics or stimulating mind discoveries, but it's being Mr Social and running with his mates at morning tea and lunch time.

Last weekend I took him to a friends 5th birthday party.  It was a big, delightful and well organised party, but I struggled as I watched him amongst his peers and his differences seemed so very huge.  He wasn't able to keep up with them running around and playing tag and he got quite scared/anxious with nearly tumbling over, so he stepped away.  Many of the games were around food but he did take part a little bit.  He loved balancing 'coal' on a shovel and moving it from 'train to train' - yes it was a Thomas the Tank Engine party.  I don't think Sam was upset about any of it, but I found it really hard watching him struggling. I admire him so much for all he is, but my heart hurt for him as the things he can't do seemed to be amplified amongst his peers.  I'm not wallowing in pity, but am conscious that he may become aware of differences soon.... or maybe he wont.... maybe these concerns are mine to carry as a mother and Sam will just carry on being a part of his friends lives not bothered by differences, but joined by their friendship.  At school and with family everyone is aware and looks out for him but this setting was full of unaware strangers which added another dynamic of vulnerability .. and frankly I don't like that emotion very much!.  There is something much more lovely about familiar.... but I know Sam needs to be vulnerable to grow and adapt and enjoy life and I will just have to pull up my big girl pants and get on with it.


Yesterday Sam had an outing to Middlemore Hospital for an ultrasound.  He has varicose veins appearing in his legs and they want to rule out DVTs and just to check circulation and cause.  That was an hour of jelly pushing on his legs/groin and he coped so well with it.  We will await a full report from sonographers to Sams Dr so not much to report, although they commented that some veins were small.

Quotes from Sam to make you smile:

1.  I was telling the kids that Francis had to spend another night in LA as the plane broke down.  Sam pipes up, 'Did Dad call the AA to get the plane fixed?'

2.  Francis is in Switzerland for work.  At 4 am this morning, 'Mum Mum come quick.... I miss Dad, I need to you to comfort me!'.  It must be said I didn't comfort him, but gave him a quick cuddle, assured him he would survive and begged him to please go back to sleep!

I leave you with a cute photo of Sam on the phone to his Dad... he loves telling him all about his day  - today they did the letter O, had school assembly 'which was boring!' but he got to run on the deck with his friends.
This chair makes him look so little!

Monday, April 13, 2015

Did you want Full Cream, Trim, Left or Right urine with that?

Ok, so I'm really hoping Francis is paying attention when he grabs the milk for his morning coffee! Check out the photo - even for us this is a new level of weird!


For the last 24 hours we have been collecting Sam's urine in these special bottles - one is his left kidney and one is his right - all labelled and tagged when I picked them up from Middlemore Hospital on Friday night with a chemical and we've been adding Sam's urine to it.  They need to be refrigerated until they are dropped in to the lab, which will happen when we head to Starship at 10 this morning.  As weird as it is, it is also fascinating and has been cool to see my daughters figure out that actually the science they are learning at school has practical application.  The contents of these bottles will be checked for volume and also levels of various minerals.  Hopefully the info gleaned from this experiment will help the Drs figure out what has caused his renal calculi (aka kidney stone).  It could be something as simple as too much calcium in his TPN, which they could change or fix with medication.  So in two hours we will be on the road to Starship.... with a trip via Columbus Coffee for a coffee!

Yesterday I saw unconditional love and I post a photo of it below:




Sams sees past the red, past the groaning as I stretch out my muscles, past the sweat and just came and gave me the biggest kiss/hug ever..... funnily, he was the only one in the family that was able to be snapped doing this! I'm guessing it's just a matter of time before he too starts rating the outside as more important than the inside, so I'll just enjoy it whilst I can!

This morning I read of unconditional love: Psalm 139, 17 - 19, 'How precious are your thoughts about me, O God!  They are innumerable!  I can't even count them; they outnumber the grains of saind! And when I wake up in the morning you are still with me!  So I can't guarantee that all things will go my way today, but knowing that I wake up with the God of the universe having me in his sights, floods me with confidence, peace and hope for the day ahead.

Right, off to do my morning run before getting ready for Starship.... although I just want to kind of loiter about the kitchen and see how Francis copes with making his coffee this morning! 

Have a great day!

Thursday, April 9, 2015

School's Out.... Running's In!

With the Easter School Holidays upon us I have a moment to breath and update.  

Last term finished with a super-dooper-fabulously-awesome bang!  It was the last morning of school and Sam took a bite from his biscuit (aka cookie).  Such an iddy biddy little action that reduced me to tears.  His carer rushed over to tell me.  The kids were all sitting with their lunch boxes open and eating -  Sam just picked up his biscuit and copied them!  He had the piece in his mouth and he just sat their frozen for about a minute looking dumb-struck.  After a bit, he mumbled to Ange, 'I don't know what to do, can you take it out?'. So Ange fished out the soggy remnants.  After school I was asking Sam what it felt like to 'eat'. He said, 'I can't do it, I don't know how'.  So I showed him how to chew and moved his jaw about.  The next morning the first thing that he said when he woke up was, 'I am NOT going to eat today... hmmpff!', with arms folded across his chest!  So although it was not truly eating, it was truly a major step in the life of Sam.  We had been told from other families with children learning to eat, that it was the positive peer pressure that inspired them to do it - no amount of specialist feeding programmes or parental encouragement did the trick, it was watching others eat and feeling like they were missing out that made the difference.

So it was a fabulous end to a brilliant Term One of Sam's school career.... and just so you can all share the joy - I even took a pic of his biscuit! 



I am working on the idea that although he is nearly 6, when it comes to food he really is a baby, so we are starting to give him pureed apple etc to see if he will start to swallow that.... we are hoping once he figures that out chewing may come next.

The thing is that we don't know if food will actually exit his stomach and into the intestine, which is why his milk feed goes into this Jejunum and not his stomach - even the milk wasn't exiting properly. But if it encourages normal human interaction (and so much of lifes celebrations are done around food), it will be worth it. 

With no school, comes free time.  Time free from school, but we have had a few hospital appointments, monthly bloods/urine samples etc.  Sam has just gotten over another nasty urinary tract infection, which saw him on strong antibiotics again.  On Saturday he has an optometrist appointment, Monday a gastroenterology review.  We saw Sam's lead paediatrician last week and he has referred Sam to a genetics consultant and also for an ultrasound.  There has been some recent research showing positive signs that the gene has been identified for Sam's rare condition, which has implications on knowledge for him and the girls.  The ultrasound referral is due to him having quite puffy legs with an increasing amount of varicose veins.  This is unusual in a child and could be due to pressure on some veins in the abdomen - hopefully an ultrasound can find the culprit.

But with free time, I've had time to dream..... and with every dream there is an element of impossibility..... so with my rose coloured spectacles and time to dream, I have signed up to do the Auckland Half Marathon again.  It's been two years since I last ran half marathons. Last year was a hard year with Sam having around 6 months in Starship and with tiredness my only dream was of sleeping...... even this dream seemed to escape me so cream buns and sugar drinks helped to keep me awake - no surprise I have put on 10kgs.  So with new resolve I have decided that I need a goal and I have committed to run and fundraise atleast $2000 for Starship Childrens Hospital.  This year two of my sister'n'laws (& anyone else that wants to!) are going to join me and we aim to do the hard yards in order to help raise funds to help the many thousands of kids that find their way to Starship each year.  I do not love running, but I know I am healthier when I do and that pushing myself out of my comfort zone is also a good discipline for me.  I can always find many reasons not to train, but once I make it public I don't want to let myself down and I want to reach my fundraising goal as I am so grateful for the care Sam has received and want others to benefit.

I have been slack updating the blog - I get tired of my own voice and the dullness of what I have to say (another uti, more abx, few nights in hospital etc...) gets repetitive.  Sometimes it's actually quite depressing and upsetting for me to formulate the sentences as I put Sam's life in print.... so I have kept quiet for longer periods to help me cope.... but with my new goal, new training regimen (ahem.... A training regimen) I promise shorter more regular updates, hopefully with humourous antedotes and something that can crack a smile or two for you.

I leave with happy thoughts as last month I escaped to Perth for 4 nights to stay with my brother and his darling family. It was such a great escape - loved every minute of it, neat to hang with my new nephew, discover Perth and the surroundings and hang with my fun family..... ah, it was bliss, most definitely too short, but still worth while.

I leave you with a photo of Francis and Sam hanging out in my absence!