😘🙂any achievement however small was celebrated.  Exciting moments when Melissa moved her walker backwards (it was not important she could not move it forwards) though we did feel her frustration.  She tried so hard!. She loved her bicycle.  We got the first size bike with trainer wheels and had it adapted We bought gloves - as she was tactile defensive and did not like touching things.  Once her hands were in the gloves they were attached to the handle grip with velcro so she had to hold on.  We used small straps to hold her boots on the pedals.  Melissa loved it!  🙂  She rode through the house a she could not ride it outside because of the light.  Luckily we had plenty of room for her to ride inside.  It became our daily exercise.  You could see she felt free.  She could also see everything at her own height.  I remember back to all the fun we had - happy times.

🙂We had a general service plan completed and it gave us an incredible insight as to how life was for us as seen by others. sharing the findings...

Melissa is a delicate looking girl 74cm tall and wight 7kg (age 3). Prevention is the key in regard to infections - unwell people do not visit the home.  Many body functions are immature a major requirement is continual and ongoing care provided by her parents.  She is getting physically stronger, can roll over and sit up by herself.  Can rock quite violently identified as a behavioural problem.  Cannot crawl but loves her standing frame.  With increased mobility comes a need for increased food intake.  Safe seating required that will not encourage her to rock.  A scooter board used to encourage a crawling action.  Four meals throughout the day.  Wind, vomiting and constipation are three difficulties.  Melissa has normal 3 yr old's teeth - looking at an electric toothbrush.  Melissa cannot regulate her own temperature - needs to be carefully monitored.  Two bottles a day - uses small narrow bottles with very small teats.  Necessary to keep her stimulated or Melissa will fall asleep and disrupt her already difficult sleeping schedule. Nighttime getting to sleep very difficult often aftter midnight.  Melissa shows she knows what she wants/needs.  Needs interaction with other children to support development. Infection risks a concern.   Communicates non verbally.  Starting to take person's hand and guide it to what she wants and looks at what she wants.  Responds to her own name.  Responses are slower than other children - extra time needed to respond.

When in bright light Melissa would develop red sore streaming eyes and sneeze non stop with subsequent nasal congestion!

The same symptoms as when she overheated.

Special glasses were made, tinted and with an ultra violet screen.  For short periods they seemed okay but because there was leakage of light at the sides they were of limited use!~

Bright light indoors meant she would have to be in the room with her back to the windows to reduce the glare.  This was very restricting for family life.

Solutions:  were side screens on her tinted glasses, screening around her pushchair and car seat.  Obviously it followed evenings were best for outings and eventually window blinds in her playroom that could be altered as required to channel the light away from her.

We were desperate to be normal!  many times we felt so inadequate and as though we were way out of our depth providing the right care as there were no real answers.

Hence my sharing our experience in the hopes I can support other families!

sharing our position as written to SOFT USA when Melissa was 16 months old....

Melissa Helen is our fifth child born 28 April 1988 in Palmerston North, NZ.

Weighing 5lb 31/2 oz Trisomy 18 was confirmed in the first week and we were told there was little hope for her.  Breast, tube and bottle fed for the first week, then just by bottle and at 15 days old we brought Melissa home to feel the love of her family.  We spent the first four months in a daze with family and friends' support annd a lot of prayer.  We battled to get every possible drop of milk into her.  At four months old, she choked on medicine for a cold, resulting in pneumonia.  In hospital Melissa was a very sick little girl and there was little improvement for a week and then her medication was changed and miraculously Melissa recovered.  From that miracle we witnessed, we have since seen many others, enabling our precious daughter to go from strength to strength.  The joy we were given with each new milestone far outweighs the difficult times we have. We live each day at a time and give praise for the time we have together.  Meliss's little giggle and her smiles are our precious gifts.  Now at sixteen months old, Melissa weighs just less than 15 lbs, is alert and responsive.  Rolling both ways now makes her mobile and she can sit alone and stand at a couch though still falls as her arms lack strength to hold her up.  There is a heart murmer, we are at present having tests done to determine the problem though so far her heart has not been a concern.  Melissa goes to an early intervention clinic, which provides us with support and ideas for stimulation for her. 

Her eyesight is good, we are still unsure of her hearing ability and her narrow nasal passages cause her to breathe noisily at times.  The major disability would be her intolerance to light, which places many limits on every day life.  Melissa has three solid meals a day and two bottles: all her food has been based on Isomil (since four months old), as she did not settle with other formulas.  She is a placid child and has always managed to let us know if there is something wrong. 

Melissa is touching many lives and she is indeed a gift from God.

This is how I shared our experience at that time - hoping it will provide information for other families

This photo shows the clasped hands! however to be fair they did not present as an issue and did not stay clasped as we were always touching them etc in the early months they were clasped as Melissa slept.  Really she grew out of it.

We struggled with eye infections - in the morning it could be difficult for Melissa to open her eyes as they were often stuck together - again something she grew out of!

My focus / top priority was to give our daughter every chance to reach her potential.

All the extra input and support took a lot of energy!

At 4 months old Melissa recognised Mum and Dad

We got our first real smile at 6 months

She was rolling over well by 9 !/2 months old.

At 10 months old she could stand assisted with straight legs!

Age 11 months Melissa copied lifting her arm up ( 3 Times) - a huge effort! She could even pick up a rattle while rolling!

She enjoyed passing a rattle of rings from hand to hand.

At 14 months she moved her walker backwards.  Great effort and excitement!

At 14 months she also touched my chin and smiled.