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!





Tuesday, March 17, 2015

A Transition Team Meeting!

Today I met at school with 12 individuals - some from the Ministry of Health, some from Ministry of Education.  Sam has been at school since February and it was time to talk about the transition to school and for the Ministry of Health physio and O.T. to step away and hand over to the Ministry of Ed physio and O.T.

My initial thoughts (as I sat and  looked around the table) were:
1.  Man Sam keeps a lot of people in work!
2.  I don't get why we have to swap over to new people when he has relationships with people that have worked with him for years and know how to motivate and push him.

Then one by one each person introduced themselves, their skill/profession and how long they had worked with Sam.  I felt quite emotional as they went around - some worked him him since he was 2 and still in a standing frame unsure if he'd ever walk, Ange explained she was his current Teacher Aide, but had been his TA at kindergarten and carer at home since he was 5 months (I was welling up about now), some haven't worked with him but will be 'picking him up'  now that he is under the Education Dept....

I opened with the parents perspective on how Sam has transitioned.  I explained how Sam wakes squealing with delight wondering what letter they will do at school today, or that it's library day!  I explained that because of the hard work of the people around the table is hasn't felt like a transition - he just woke up one day and ran into school and hasn't looked back.  There were discussions on various ways we can help him get physically stronger through specific exercises and how we need to create times of quiet for him, as he is so desperately social but he gets exhausted trying to keep up and not miss out on a thing.

So it was a very special meeting and after school Sam was so excited to tell me they had done the letter F today and then sang the little ditty that goes with it.

Since school started, it hasn't been plain sailing - he has had 3 admissions - 1 for a broken central line (that was kind of crazy/scary and I just didn't write about it!), 2 for urinary tract infections.  But with the support of Starship and the community nurses, we are managing to mostly keep him at home and having daily IV antibiotic infusions.

A funny story from his last admission.  One of the consultants was asking Sam about school and said, 'What's the best thing about school Sam?'..... Sam answered, 'Thomas' Mum Natalie'.  Lots of laughter and then the Dr asked what was she like and Sam answered, 'She's blonde!'.  I have since met this lovely lady, and she is indeed very nice and hangs out before and after school and helps out on the playground.

On Saturday Sam had a full eye check up as it was wondered if his lack of concentration is due to vision.  Well, his eyes are very good, but he is long sighted and more so than normal for his age/stage.  He has trial specs for a month, and he will be watched in class to see if they help him. From my untrained eye (no pun intended) it would appear that most of the boys in his class have severe long sightedness, if lack of concentration is one of the symptoms!  Joking aside, we are happy that his whole being is being looked after so well and if specs help, fab!  If they don't at least we have tried and we will adapt.  I am constantly amazed at the patience and skills the teachers and teacher aides have - I truly admire anyone that sets foot in front of 20 little individuals and seeks to inspire and herd them for 5 hours.... phewf, tired just thinking about it!

Sam currently has a pseudomonas in his left kidney which is proving rather problematic to shift.and is resistant to all oral abx.  We await a plan......

BUT, my plan is to get on a plane and escape to  Perth, Australia on Friday!  My little bro' and his gorgeous wife and boy live there... and I figured it was time I met my nephew who is now one! Francis got back last night from Tanzania and is due to head to Myanmar in a couple of weeks, so he is doing Daddy Day Care so I can escape for 5 days.  My plans are just to chill, sleep, eat, read, hang out and repeat......

So it has been a busy term juggling work, hospital and growing girls... but I leave you with photos of Sam hanging out at school - desperately trying to fit in and just be like all the others...... the thing is we all know he's rather special!

X


Monday, February 9, 2015

M is for Milestone, Miracles and Mmmm sandwiches!

I wrote this last Monday and the whirlwind that has followed, meant I have only just realised I didn't post it!  He has loved being at school and wakes excited squealing that he can go to school again! But I leave you with last Monday's ramblings....

See today was a pretty special day in our home - We lined up not two, but three kids for their 'day 1 of school' photo. This day Sam too was in the photo aged 5 years, 6 months and 27 days old.



It was momentus - no nerves or pulling of heart strings as last child leaves the nest, just total pure delight and wonderment that this day was happening.

This journey has been one of many miracles - where the unexpected did happen and the expected often didn't. Unsure if he would survive birth, pull through after operations and infections, uncertain if he could learn to walk .... And the list goes on.  Today as he ran across the school courtyard my heart was full to bursting as the miracle ran in front of me.

'Mmmmm sandwiches' is what Sam said as he 'ate' his lunch sitting with all his new buddies. If you weren't paying attention you would swear he was eating. But tonight his Thomas the Tank Engine lunchbox is still full on the bench and he is hooked up to his two pumps for 14 hours. I smile at his creativity and courage to be just one of the kids doing normal stuff at school.

So a big day for us today - happy and tired and thankful.

X

Wednesday, January 28, 2015

Monsterville Visited Today!

So Sam has his new central line embedded in his chest.  The old one is in a pot for 'show'n'tell' - truly amazing how such a teeny tiny tube can sustain a child for 3+ years.

Sam went into theatre a little anxious.  He is now old enough and able to put words to his thoughts.

'Mum, I don't want to go to surgery - can't they just change my line on the ward please??'. 'I don't want to lie down under the big light in surgery - I'm frightened!'.

But we got him in with the fabulous anaethetist singing 'Wonky Donky' and agreeing with Sam's attempt at control: Sam, 'I am NOT lying down, do it sitting up!'. So Sam sat on my knee and the magic juice was given and he fell asleep on my knee and then we transferred him to the table..... then I left him in their hands and went and switched off knowing there was nothing I could do.

2 hours later and I head to Recovery and I hear him in the corridor - oh dear, as so often is the case, Sam is now in Monsterville as the reaction with the drugs had taken over!  He was shouting and telling anyone that spoke to ,'Shut UP!'. He was pulling on anything and everything, throwing things, rolling, screaming, writhing.  We got him up to the ward and tried to put the probe on his toe so as to monitor his heart rate etc.... it took 2 of us fully swaddling him in a blanket and pinning him down to get it on and a reading done - and this was done after 10 mins of trying negotiation, bribery, cuddles etc... At one point he shouted, 'I am going to run away and you will NEVER find me... ever!'.  I asked him where he would run to and he said, 'I'm going to run home'.....as I smiled at his logic I explained I would find him...... finally after about 45 mins he asked for hugs and I sat holding him for 10 mins with him just wimpering and relaxing..... then sleep!

A 2 hour nap and Sam awakes totally happy and back to himself.  He doesn't remember a thing and was very happy to stand and check out the cars out the window and chat to his uncle Eddie that popped in.

Hoping to get home tomorrow as all went really well.  We will need to pop in in 3 weeks as the cvl has two lots of stitches anchoring it that will need removing.

As always, I am so grateful to fabulous friends that have opened their homes and lives to our girls - they are having such a fun few days at the beach/pool that it will no doubt be a let down coming home.  But I can tempt them home with the promise of Nana's birthday bbq with the extended family tomorrow night - good food and family is always a good card to play!

Thanks everyone - for praying, for caring, for texting, for having our girls, for the medical team that are so skilled to do crazy surgeries on my boy.... to Sam for being such an amazing boy that puts up with so much.... to God for sustaining us all.

Sleep well. X