Yes I do have a goal for 2015

A difficult and emotional one - but it is my goal for 2015!

I am currently setting myself a 2015 challenge - going through boxes of paperwork and information I have collected over the years (since 1988) - including the hospital notes, therapist reports etc etc on Trisomy 18 and collating what I feel could be useful info for others walking our journey.

So if there is anything specific you could be interested in - please ask

and yes I am shedding some tears as I read through my diaries  - but I know I need to do this in the hope it will help other families.

For Your Interest - progress for our daughter Melissa - written 1991 when she was 3 years old

She is now 3 years old - sleeping well and is playing at an exploratory level.

She has some good visual tracking and is doing some initiating!

There is sound making and she is sitting with good stability.

Melissa enjoys kneeling and can stand in a corner and shift weight and twist around before falling.

We have come through this year with excellent health, good weight and height gains.

Moving from town into the country has caused no problems and we feel sure has contributed to the great progress Melissa has made.

She still has her teacher for 2 hours Monday to Thursday and a  student after school each day for 2 hours.

Melissa now has 6 meals a day and is still on isomil to drink.

Her constipation problem has been solved thanks to Milk of Magnesia.

We are only too happy to be contacted by anyone needing support.

Melissa standing  - she could not do it independently however this was a way she could do it  - by standing in the corner - the corner was supporting her - and allowed her to build up some strength -  another fun time that she really enjoyed!

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 her.

Melissa also needed extra quantity of clothing due to the vomiting and as a lot of her clothes were wool they were unable to be dried by dryer so a longer drying time was required.

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 all in one body suits made on the principle there would be no gaps in her clothing. This may all sound odd but I can assure you it was one of many things we learnt caring for our wee girl.

There was a lot of hands on handling of Melissa 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 again were needed to be made as they were too wide for her and the necks too loarge and also needed the extra length.

Wool tights were used in winter  - we would need to resew the feet to fit her.

Long pants / trousers again seldom were bought ready to wear as the waists were too big.

Her boots were made at Orthotics usually twice yearly and occurred a part charge.  For her to use her standing frame etc it was essential her feet were comfortable.

Sox were difficult to find.  We made hand knitted wool ones which in winter were worn over her tights.

Nightwear again was specially made due to her small neck.

All her bibs had to be made for the same reason.  Most days 8 bibs would be used and continually need mending.

Over nap pants were also hard t source and she wore them 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.

sorry it is not a good photo - I am not too good at scanning.

  Melissa wanted to sit so this is one way we facilitated this - some very firm foam rubber cut to allow her to be sat in it and be safe.  It worked well.