Love4Lily

20/06/2025

💬 One of the biggest challenges with communication systems for someone who is non-verbal is how bulky and time-consuming they can be to set up. By the time you’ve transferred out the chair and got everything ready, 10–15 minutes are already gone!

I've been thinking hard about how to make communication easier for my daughter — and I finally found a solution that works for us! Since she always has her tray table on her wheelchair, I created an AAC board using iron-on vinyl directly on the tray with her key communication symbols. 🙌

I'm so excited with how it turned out! It’s simple, accessible, and always within reach. Just goes to show — when love meets creativity, the sky is truly the limit. 💕🌈

📌 If you’d love something similar for your little one or have your own ideas you’d like to bring to life, feel free to reach out. At Lily Pad Creations, we’re all about making personalization functional and beautiful — especially for our special needs community. 💚

12/10/2024

A weekend of showing off... sitting so beautifully in physio

25/12/2023

17/12/2023

My child .... you shine brighter than all the Christmas lights in the world!!!

24/11/2023

Such an incredibly proud moment...

When you have a child with a disability you write off in your mind and heart certain things because that is the unfortunate reality of disability.

So to be invited to schools Prestige evening and watching your precious sweet child recieve an award is something that's means more than anything to me as a parent. Lily was awarded Outstanding participation is activities group.

I'm so incredibly proud of you my angel child and I just cannot wait to see what other surprises you have up your sleeve. So absolutely blessed to be a part of this amazing school there is not enough praise I can sing

13/11/2023

Standing tall in physio!!! Even when working those muscles miss Lily still has a smile on her face

15/07/2023

So many proud moments today Lily the soccer player in physio today

15/07/2023

It's cold but we continue to ride on....

Miss Lily even showing off and sitting unsupported for a couple seconds. Well done my beautiful girl

11/07/2023

Some school holiday mommy and me time... love you my sweet girl so blessed for special days like this

20/05/2023

Not even the cold can keep lily away from her horsy friends Tumanako Equine Therapy

05/05/2023

I know it's really been a long while since posting. It has been a really difficult first half of the year and I've really had a difficult time with all that unfolded....

Unfortunately Lily really struggled with the adjustment from DCAPS R to DCAPS 1. Although she has the most wonderful teacher the school just really struggled to feed Lily. This along with adjusting to a much longer school day and also changing caregivers as our care giver of 9 years is on maternity leave, Lily just went into total feeding shutdown mode. She lost a significant amount of weight as a result of refusing to eat and just not having the energy to focus on swallowing. Things got really tough and I was in a position where it was time to consider a feeding tube.

Then school holidays came around we thought it would be a a good time to do the surgery and then Lily decided that she feels like eating again...... I thought ok let's postpone and see how things go when back at school....

Term 2 starts and Lily is a whole new adjusted child her energy levels are so good that the teacher says all the kids are falling asleep after 2nd break and Lily just keeps going.... Lily also just continues to eat wonderfully and gains weight once again.... LOL this silly sausage sometimes I think she just likes to keep me on my toes when she thinks my life maybe a little to boring.

So after all the anxiety and worry, dieticians, speech therapist, surgeon consults, neuro consults and many many prayers Lily is currently out of feeding tube territory. I can't even begin to express how amazingly supportive Lilys medical team was not only from a medical/therapeutic aspect not once pushing me into an uncomfortable corner. Listening and taking the time to consider everything before rushing into decisions. I am so very blessed to have found such a wonderful team that I can truly trust to put lilys best interest at heart.

I must admit I still have an underlying worry things may take a turn again, but for now I'm enjoying being back at our 'normal'.

Lily is now just thriving she has made the most special friendships not only kids in her class but even higher grades. When I fetch her from school there is a chorus of 'bye Lily my friend' she has a special friendship with one of the boys in her class she just wants to hold his hand and he is always looking out for her. One Friday using her eye gaze I asked her what did you do at school and she selected cooking. First I thought it was a mistake but because it was Friday and I knew they bake on a Friday I went with it. She kept say 'spread' and 'knife' over and over and I thought ok she is just fixating said 'yes we spread with a knife' and tried to redirect her. It wasn't till monday that I got a photo from her teacher spreading Jam on bread that she made during baking on Friday that I finally understood what she was saying... yes I cried some happy tears 😹

One thing is for sure that although the hard days are tough the good days outweighs the hard ones 1 million to 1.

20/01/2023

We are very delayed but settling into big school has been a bit of a rough one for us... with new environments means new people to learn how help lily, the longer days have been hard for lily and there has been alot to take in...

Lily has a lovely new teacher and her bestie is in her class so she is happy. Here is to a year of growth my angel the start may have been a tough one but your resilience continues to amaze me.