Sienna'z Soapz

Fundraising for my beautiful wee girl Sienna Grace, who was born with Orofaciodigital Syndrome Type 1 (OFDS1) an extremely rare genetic condition.

change.org 05/11/2017

535 signatures still needed today!

Please take the time to sign this petition, Dunedin Hospital desperately needs a Ronald McDonald House, so children like Sienna, and families like ours can have a home away from home, full of love, care and support πŸ’œ

change.org Ronald Mcdonald house in Dunedin Hospital

[06/11/17]   Hi Everyone 😊

I am in the process of designing a new product.........handmade by ME!

It will double as a bath bomb and a shower bomb. So you can have a fragrant bath, or, if you don't have a bath, sit it in the bottom of your shower and the water will dissolve it away while releasing beautiful fragrant essential oils πŸ’–

They are made from 100% natural ingredients and 100% pure essential oils πŸ’œ Sienna has used them in her bath every night this week and it has helped clear her eczema, reduced her itch, and hasn't flared up her super sensitive skin.

Who would be keen for bath/shower bombs? Trying to gage interest while I'm still finalising the product 😊

[04/27/17]   ❀️ INCOMING πŸ’œ

*bath bombs*

Lots of bath bombs! πŸ›€

Watch this space πŸ‘€

[03/30/17]   Update on Sienna πŸ’œ

Last week we travelled through to Dunedin for Sienna's 5th operation, which went perfectly 😊

For the first time in her life she can now hear properly! She can hear me whisper, she can hear the planes fly over our house, my neighbours motorbike (momobye as she says) and she is starting to talk! Hearing her say basic words is amazing xox

Sienna is now aged 3 years 3 months, and in that time she has overcome so much πŸ’œ she has had surgery on a severe tongue tie, a cleft palate, a pseudo cleft upper lip, three sets of grommets, and one set of t-tubes.

She has had noted sleeping problems since birth, weakened and small airways, severe sleep apnoea and obstructive apnoea, decreased oximetry, and spent the first 14 months of her life on a portable cardio-respitory monitor. She has now grown out of all of the above, apart from a wee snore (which is super cute) and waking 1-2 times a night.

Sienna had low muscle tone from birth and struggled to put on weight despite EBM through a nasal gastric tube, trying a multitude of different formulas including prescription formula and concentrated as per the dietitians instruction, after her tongue tie surgery at 5 months old (she was strong enough to handle the anaesthetic by this stage) and her cleft palate repair and upper lip release and reconstruction (aged 9 months old) she began to gain weight, and at 11 months old could sit up by herself, with 18 months of intense physiotherapy, hydrotherapy, ortho boots, leg cuffs and a walker, Sienna could finally walk unaided for the first time on her 2nd birthday.

Sienna has Macrocephaly and Plagiocephaly (of her head) but has been extremely lucky missing all the neurological conditions that go with OFDS1, a CT scan of her head/brain at 10 months old showed everything was normal.

Sienna has a high risk of developing Polycystic Kidney Disease which could result in renal failure and requiring a kidney transplant. An ultrasound has shown her kidneys are currently normal shape and size, functioning perfectly and no signs of cysts. We just have to keep an eye on her blood pressure and go for regular ultrasounds to monitor her kidney development.

Sienna continues to actively use Makaton (children's sign language) to communicate while her speech develops. She attends a home based daycare for 20 hours a week while I work.

Her immune system is the strongest it has ever been, and so far this year there have been no admissions to hospital! 😊 (touch wood!)

Sienna is still on annual check ups with her paediatrician, because OFDS1 is extremely rare, we are still entering the future with a lot of "unknowns" so having contact with other parents around the world whose daughters have the same genetic condition, helps a lot.

Sienna is doing amazingly well and continues to astound me everyday with her strength, courage, and determination. She has an awesome sense of humour, is cheeky and fun loving, has a great group of friends at daycare, and a fantastic support network around her πŸ’œ

I would like to sincerely thank all of Sienna'z Soapz supporters and followers, your kind words and help have made ours, and Sienna's journey so far, much easier.

Sienna is a rockstar ⭐️ and I am so incredibly proud to say she is my daughter xox

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Chelmsford Street
Invercargill
9810
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