7. Nov, 2021


eye - hand coordination  ideas

hands in and out of the flow from the hairdryer

ice cubes in bowl

a toy in a bowl of water

poking play dough

hands in a flow of water from tap / hose

bowl of warm stones (warm in hot water )   

20. Jun, 2021


All new Carers were given this     Important things to remember

Please wash your hands – on arrival, before food preparation and after nappy change.

IF UNWELL or if unsure DO NOT COME TO WORK  ie sore throat, cold or viral infection and sneezing or runny nose.

Melissa’s Doctor suggests: all carers have the flu injection, you need to be trained in CPR,

Please ensure youyou know how to use the pager,  no perfume can be worn, please ensure you

Do not smell of cigarette smoke.  SHOES OFF in lounge to keep the carpet as clean as possible

Read the BOOK ON ARRIVAL from the day you were here last and please fill it in before leaving.

ANY QUERIES – please ask.  THANK YOU.

This is written to ensure Melissa’s safety. In spite of this we had a time when whilst showering Melissa started to gag and we discovered that the steam had released the tobacco smell in the carer’s clothes.

The above are precautions to ensure Melissa’s survival.  Prevention is the key.  Also it is important to document your time with her as more people are working with her. 

18. May, 2021

Clothing Challenges

Clothing for Melissa was a real challenge.

Clothes needed to be specially made.  It felt like a miracle to buy a garment that would fit.

Melissa also needed extra quantity of clothing due to vomiting and as a lot of her clothes were wool and unable to be dried in the dryer that also meant extra were needed due to longer drying time.

Summer singlets were made as Melissa had a very small neck and long body.  Again due to her length and constant handling her clothes could come apart in the middle so we had an all in one body suit made on the principle there would be no gaps in her clothing. There was a lot of hands on handling getting her in and out of various pieces of equipment and remembering she was unable to verbally tell us when she felt uncomfortable, clothes twisted  etc.

Sweatshirts needed to be made as they were too wide, the necks too large ,  also the extra length was needed.

Wool tights were used in the winter and we would need to re sew the feet of these to fit.

Long pants / trousers seldom bought as the waists would be too big.

Her boots were made especially at Orthotics occurring a part charge.

Sox were difficult to find. We used hand knitted ones which in winter were worn o9ver her tights.

Nightwear was specially made due to her small neck.

All her bibs were hand made for the same reason. Most days eight bibs would be used and continually required mending.

Over nap pants were also hard to source and were worn day and night all year round.

I think her dressing gown was the only garment able to be bought and worn without alteration. 

The same one lasted several years just getting a bit shorter each year as Melissa became taller.

27. Jan, 2018


🙂 wishing you a Happy and fun 2018.

looking back I realise I spent a lot of time making special memories and creating fun times - knowing we may not have a long time together.  I feel that started at the hospital when we were given so little hope.  Reading our story I realise Melissa's needs were indeed 24/7 and I guess I reliase now that took it's toll on our family life.  I still know we did the best we could and we did get smiles and giggles daily.  

5. Mar, 2016

a special memory and progress noted!

🙂We took Melissa to Napier to visit hubby’s sister.  At age eight and a half it was just awesome watching Melissa playing with their granddaughter.  We realised how much Melissa had grown and we observed the progress she had made.  It was a special day.  They both watched the video The Wizard of Oz and we were amazed to see Melissa so engrossed, age appropriate and happy. 

From that day on videos were introduced into her programme and soon she had her favourites. She loved the Our World Series and in particular the penguins.  We played them over and over for her and Lord of the Dance was another favourite. 

More progress was made as Melissa mastered sitting confidently astride a green roll provided by her therapist!