Life of Cruz

$11,130 of $5,000 goal

Given by 85 generous donors in around 12 months

I am setting this up for my sister Tammy & her boy Cruz who are struggling with the day to day heartache of being bound to the hospital

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Cruz was admitted to Mater Hospital in Brisbane when he was 3 1/2 weeks old (September 2013) with a malrotated bowel with many post op set backs resulting in two months in hospital

Cruz was admitted to Mater in April 2014 where he remained until his 1st birthday in August 2014 (4 1/2 months). He was at home for 3 weeks but was going downhill healthwise not being hooked up to TPN (total parental nutrition) going into his central line, so was admitted to Royal Childrens hospital 1st September 2014 where he resides currently and will be for the near future

Has just recently had a blood clot around his heart and is now on long term blood thinning medication for prevention of future blood clots

Tammy is finding it difficult being so far away from family and close friends and Cruz is not able to travel to NZ to bring him closer to family which could assist. Cruz basically requires 24 hour care and the people that they trust to help watch Cruz so they can maybe have a breather and regroup as a family. It is costly for friends and family members to be flying back and forth every now and again to help support them, and also hard for Nathan to be two places at once as he needs to continue working as well.

It looks as though Cruz is going to need ongoing support with Physiotherapy, occupational therapy, speech and any special equipment to help assist him with gaining strength and mobility so he can learn to sit, crawl, stand and also speech to help work through the oral aversion as he has spent most of his life lying on his back due to bowel operations and many set backs.

A list of things Cruz has/had is:

* 5 laporotomies for twisted bowel, bard button insertions and jejunostomy tube insertions (with 4 of those being emergency operations); appendectomy; LADDS procedure and bilateral inguinal hernia repairs

* Suspected gut dysmotility and Cruz is now on the waiting list for motility testing in early 2015

*Extremely difficult intravenous access hence the long term central line in his chest

* Difficult to intubate with multiple failed extubations

* GORD (gastro oesophageal reflux disease) since birth and airway inflammation

*Grade 2 airways and microlarynx

*Failure to thrive since birth and malabsorption problems

*Tethered & low lying spinal cord with unknown future problems until Cruz is abit bigger

*Extreme oral aversion since 3 months of age (will take nothing orally)

*Re-feeding syndrome due to unresolved duodenal obstruction as Cruz needs to be bigger for his next big operation to attend to the obstruction

*Chromosomal disorder (Duplication of chromosome 12 and Deletion of chromosome 2)

*Difficult sedation threshod requiring large quantities of opiods & BZDs which then leads to opiod withdrawal and insomnia

*Hypoglycaemic episodes and small VSD

*High infection risk with long term central line in - which has already resulted in having line sepsis twice

*Suseptible to viruses with low immunity resulting in months at a time having colds, viruses, pneumonia

Latest update

30/06/15 30 June 2015

Hi everyone, sorry about the delay in updating this! We are still currently at home and loving living a "normal" type life - although to some it wouldn't be with Cruzs busy schedule of physio, speech, O.T appointments, hospital visits every two weeks and his daily routine with his meds and machines....but we have definitely adjusted to this way of life and Cruz is the happiest little man and just thriving being at home.

He has now started attending a Special Needs day care one day a week (for 2.5 hours) where the parents stay with the children. There is only 4 other kids in the class with varying disabilities, and it is so amazing seeing them trying to interact with each other, and the equipment and toys there is all well suited to each of them. I am loving taking him there and he is slowly getting used to being around more people and better with strangers. He has also started attending Arundel Horse riding for the Disabled where he rides a little black pony called Pepi once a week for 30 minutes ($25.00 per lesson). This is for physio reasons as it strengthens his core, and interaction with people again in a nice friendly environment. Cruz attends Speech and O.T therapy the old Coast Hospital (currently funded) and he goes to Physio once a week - which we have to fund ourselves and which Cruzs Givealittle fund helps tremendously towards as each session is $150 for an hour. As Cruz is growing and getting a lot taller, we are in the process of sourcing some bigger sized equipment, being a standing frame (and maybe a walker), and a larger pram as Cruz can still not sit on his own and is obviously not standing or walking at all yet on his own. Nath is currently making some bigger supported seating for Cruz. I just wanted to thank everyone again for your help and support as any equipment labelled "special needs" is so expensive, even second hand.

Cruz is doing really well at the moment though and we are super proud of him. He is getting out and about now and loving being outside. He loves books, Thomas the Tank, Elmo, music and dancing. He is getting very cheeky and growing so well...hes even getting chubby cheeks!! Never thought Id see the day!

Thanks again everyone for your support, it is greatly appreciated.

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