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Elliott's Journey

  • Update for 03/03/2013

      3 March 2013

    Elliott will be 8 months tomorrow! Elliott has spent the last month going from hospital to hospital. She started with a week in Christchurch then a week in Southland and now we are up at Starship in Auckland. By Friday we will know if she is going to be listed for a liver transplant. The team said she most definitely will be so we can expect a long stay until she has been transplanted.

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  • Starship visit #2 update

      25 October 2012

    Elliott is now 16 weeks old and we have just flown up for our second trip to Starship. The purpose of this visit was for a review post-Kasai. Since we've been back at home we've been making weekly trips to Invercargill for blood tests and appointments with our paediatrician to monitor her bilirubin level and weight gain. After one week at home she had lost weight which wasn't too good. Each week after that she has put on little amounts of weight and even though they are small gains we still celebrate them because they are not losses! Her bilirubin stayed the same for three weeks but in the last two weeks they've come down a bit which is good. We now have to try and feed her 800ml a day instead of 700ml but if we can't get that in her within the next few weeks she will have to be tube fed. So we will desperately be trying get her used to 800ml in the next few days! We also have to start her on solids next week too! Today she had tests on her blood to check for clotting, vitamin levels and bilirubin levels. Everything came back clear and all her levels are slowly heading in the right direction. So to sum up: the doctors think that there is definitely some bile drainage going on in our little girls tummy! They said we can be 'cautiously optimistic' but we won't know for a wee while if the Kasai operation has been a complete success or not. Fingers and toes are crossed that she turns around and clears this jaundice! We are definitely feeling positive and thank you all for your kind wishes. Our next step is to continue weekly testing and then we fly to a clinic in Christchurch next month. This is when the doctors fly down so that all the South Island families don't have to travel as far:) Massive shout outs to: *Traffers for donating money to Elliott from two band nights they had *Runway hair salon for raffling off a bunch of Wella products for Elliott *Illi-Q for the cute wee personalised onesie they printed for Elliott *The Longford Tavern for donating the cover charge on the door to Elliott at their recent 'Double bands' night *The bands 'Erratic' and 'Jar Run' who gave their time to play free of charge at Double bands We are completely overwhelmed by the support that everyone has shown us and feel very blessed to be part of such a special community. Thank you all xx

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  • HOME!!!

      16 September 2012

    On Tuesday our team of doctors told us they were happy with Elliott's weight gain and would like to send us to Ronald McDonald House to see how she copes out of the hospital for a few days. Her bilirubin count was about the same but her white blood cell count had come down. We knew that if she continued to put weight on over the next few days and kept her formula down, we would be looking at going home soon! Thursday morning came around by the time we knew it and we made our way up to the hospital. She had put on more than enough weight so there were high fives all round! We had a meeting with the doctor, the liver specialist and the dietician. They were all happy with how she was getting on and said that we are very lucky at this stage that she doesn't have a nasogastric tube in for feeding. They warned us that sometimes as Biliary Atresia babies grow, they can find it difficult to consume enough formula and eventually need a tube for feeding. We are counting ourselves lucky that we are not at that stage and hope that Elliott continues to feed well. After filling our script we felt like we needed to buy a new bag for all the medicines we would have to lug home! Each morning we have to give her doses of Vitamin K, A, B, D and E as well as an antibiotic. We have many boxes of little ampules and needles and syringes and know this will just become a part of our lives for the next year at least. We will need to go back to Starship in 4-5 weeks time for a review and the doctors will probably have a fair idea if the Kasai has worked by then. ?If it hasn't worked we will go through a transplant assessment and will be put on the list to wait for a deceased donor. ?If it looks like it has worked, we will continue with regular hospital visits and bloods to keep an eye on bilirubin levels. This will continue until it looks as though her liver is deteriorating and then we look at a transplant. ? So our aim for the next few weeks is to continue putting weight on our wee girl and try to clear her jaundice. It feels amazing to be home in familiar surroundings catching up with people we love and care about. ?We ventured out for brunch yesterday and it was lovely to have so many people come over and welcome us home and ask us how she was getting on. We arrived home to see that Dad had sown the grass seeds for the back lawn that Frase was half way through before we left, Netty had given our house a wee spring clean, there were baskets of groceries on the table and the neighbour brought over a bag of mail-half of which was addressed to our wee princess Elliott! It is definitely true what they say... There is no place like home.

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  • The Human Spirit

      7 September 2012

    One thing that we have especially learnt so far on this journey is how kind the human spirit can be. Now don't get me wrong, I know that people can be kind, they care for others and can be empathetic...but I didn't know just how amazing people would be when it was our turn to hit a bump in the road. The support that we have received from family, friends and even strangers has been nothing short of amazing. At times it has been so overwhelming that we find ourselves holding back the tears. We have had messages and support from people who are related to us, people who we are really close to, people who we know by association, people who we only know by name and people we have never met. That support has come to us in many different forms but they all hold their own value and worth. Sometimes it's a text message, an email, a facebook message, a phone call, a card, flowers, a gift, prayers or a visit. I know that people who are not in Auckland feel like there isn't much they can do but we have really appreciated all the different ways that they've shown their support. All of the mentioned forms of support are precious and meaningful to us. They help us find the strength we need at times when we feel helpless, times when we just want to take the pain away, when Elliott is being poked, prodded and jabbed. It has been amazing to have friends and family in Auckland too. Their support comes in different forms to those far away. We have enjoyed lots of visitors as well as people coming in to sit with Elliott so that Frase and I can go and do 'normal' things like get a haircut, do the grocery shopping and go out for lunch. It's nice to have people come and just sit with us for a few hours. Not only does it make the day go by faster, it helps to see a fresh but familiar face and it's nice to hear about other people's lives instead of focusing on our own-stuck inside these hospital walls. When I was younger I didn't like the way that living in a small town meant almost everybody knew you and your business. Since we've moved back to Gore, I have really started to like that! I like the fact that when you go to the supermarket your trip is 20 minutes longer to account for all the people you stop and talk to. Double that time when you have a new baby in tow! Since this journey with Elliott began, we have been humbled by the ways in which the people of Gore have shown us their support. Firstly my class organised a mufti day to raise funds for Elliott. Ifm usually in charge of mufti days because I run the school council and with 170 kids we usually raise about $200 for worthy causes. Well my school community outdid itself and raised $1500 for Elliott! Simply amazing! Then we found out that Noel Leeming have a bucket at their counter for Elliott, Ray White Real Estate wants to do a sausage sizzle for her and apparently something is happening at the local pub this Saturday?!?! On Monday there was a quiz night held at my netball teams local pub and it was well supported by people from Gore and Waikaka. My dear friend Lisa sent me a wonderful story to tell us about the quiz that they had secretly held. One day a little family found out that their precious wee girl wasn't very well and they were going to have to fly to Auckland for an operation. A friend of the family wanted to do something to help and knew that her netball club was scheduled to host the local quiz night, so she spoke to the rest of the netball team and it was decided that all the funds would be donated to the family to help ease the financial strain they would be feeling having to be soooo far away from their home and the Big Daddy's work. The friend also knew that there were heaps of people feeling the same way as she was and would also be wanting to help out; so contact was made and a whole bunch of the mummy and daddy's friends and family got together and supported the netball team with their quiz. The friend's husband, Bolo, rallied support from local businesses, an advert was placed in the local paper, the mummy's sister created an event on facebook and word got out. The big night arrived and loads of people crowded into the Waikaka Pub, in fact so many people turned up some of them had to sit in the corner around a tea trolley on beer crates! The support was endless, raffle prizes were donated from Paper plus, Carvin, Pioneer rugby club, H&J's, Waikaka Transport, Stirling Sports, GFS, HRT, CRT, PGG, Liquorland, Bolo's Mum, the netball girls, and a whole bunch of the mummy and daddy's friends and family. A great night of fun, laughter and digging deep into pockets followed and the little pub in the little township managed to raise $2000 for the little family and their little girl! Everybody smiled and clapped and wished the little family many happy thoughts. THE END So what Ifm saying here is that we live in an awesome community and Ifve only touched on some of the amazing things they have done for us. Ifd like to thank anyone who has been thinking of us or has done something to show us that they really care about our dear wee girl. Your gestures do not go unnoticed and we are eternally grateful.

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  • Update after the Kasai surgery

      7 September 2012

    Elliott has recovered well from her surgery, her wound is healing nicely and has been termed as 'beautiful' by a few of the nurses here. She quickly moved from being tube fed to drinking from the bottle. Due to Elliott's condition she needs to drink a special formula called Pepti Junior, this will help her to get the calories she needs to gain weight. ?For the last week our main focus has been for Elliott to put on weight so that we can go home.? Unfortunately we were told on Tuesday that the doctors suspect from Elliott's blood results that she has an infection of the liver called cholangitis. We were admitted to Starship again after being allowed to go back to Ronald McDonald for the weekend. ?They are treating her with antibiotics and she is having regular blood tests. ?We were told today that her white blood count is down, which is positive. We need to wait for bloods to be done on Monday to see if the bilirubin count is down. The doctors want it to be below 100 before we go home and it is currently at 130. If it is still high on Monday it means that she does have cholangitis and we will need to stay here a further 10 days for a course of antibiotics. I will keep you all updated as to what happens early next week:)

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