sharing info from Melissa's 7 years old report
At seven we felt it to be a miracle in medical terms due to the unfavourable report we were given at her birth. She was classed as severely physically and intellectually disabled as well as having other abnormalities associated with the syndrome. Detailing some of Melissa's needs:-
1. Melissa required feeding every 2 hours throughout the day.
2. Great difficulty bringing up wind. A constant problem.
3. Melissa was inclined to choke during early stages of sleep. If not attended to this led to vomiting! All sleep day and night supervised. 24 hour supervision necessary.
4. Melissa had light and heat sensitivity. Does not cope well with illness i.e. a cold . Melissa confined to her home 99% of the time.
5. Can be difficult getting to sleep often taking hours to settle.
6. Melissa needed to be kept happy and occupied when up / awake to avoid her crying as the crying led to vomiting!
7. Bottom line Melissa needed intense one to one input
But I need to add to this we had fun and lots of giggles and happy memories.