When born Your symptoms were heart problems, an undershot chin, low set ears, and rockerbottom feet that were gently curved upwards at both ends.  It meant you would have feeding difficulties, there could be a lack of organs, infertility, and stiffness of limbs.  Some tests would need to be done. What a lot of things.  We were stunned. 

In the first few days of your life a nurse was with you when we went in to spend time with you.  She commented on how beautiful and perfect you looked.  We were to stop being so worried about you.  She felt you would be all right.  She also needed to tell us there were a lot of things you would have difficulty with and not function well with.  This nurse gave us so much hope and encouragement.  We did not see her again.  Later when we wanted to thank her we were unable to establish who she was and we believe she was an angel there for us in our time of need.

On taking Melissa home we were told not to let Melissa get cold and to keep your room at 15 degrees Celsius.  She was to wear a woollen hat at all times.  We were apprehensive.  We were getting desperate and feeling frightened.  We felt unsupported by the medical profession. 

Knowing the expected outcome was death made everything feel worse.  Worse than it probably was.  We feared the worst, but we were not prepared to give in. 

I will continue sharing our journey

Cutting Melissa's hair - what a challenge!  She had very fine hair and needed a proper haircut.  She had only had quick trims in the past.  We took her to a hairdressers in town.  This turned out a disaster.  Something I would never have imagined / never have given a thought to.  She was all right about having her hair cut - no problem - but before it was finished she was gagging and I had to get her out of the salon.  The problem was the smell!  Another learning to add to our long growing list - Melissa was unable to tolerate the smell of hair lotions.

We were soon to realise perfumes, scented soaps, deoderants, aftershave all could make her ill.  Flowers were also included.  Any of these smells could set her nose running and eyes streaming and then the vomiting would begin.

Our solution was to occasionally have a hairdresser home visit to manage this.  🙂

our biggest ordeal was sleeping actually not sleeping.   Still in hindsight have no idea as to the reason.

To sleep in the daytime (at age 5 ) we went with a routine of an afternoon rest - no difficulty sleeping at this time of the day - in fact she would sleep so well we had to wake her.  If bored in the daytime Melissa would suck her thumb, go to sleep and miss even meals - which is why we woke her.  So why the issues at night?? I cannot understand - but if her burps/ wind was not up that meant she would not sleep and sometimes that could take till 2 am or close and then she would give in and sleep.  Seems that  was the main reason.  And as a baby we just held her so she could sleep as when she was lain down in bed she could not sleep.🙂

thought I would share my observations re 3 year milestone!

Celebration of thanksgiving and joy and feeling positive still making the most of each day! Melissa had a support persom coming into our home for 2 hours 4 mornings a week patiently teaching her to play incorporating her sitting and standing skills.  Many milestones never dreamt of have been reached.  Melissa, a loving child who loves to kiss us and who had recently found enough mobility to initiate a kiss herself, by grabbing our hair and pulling us towards her.  Also can now use her baby walker by pushing it backward. Her progress is rewarding. Rolling on the floor easier even managing to roll over her arm that seems to be in the way.  Not much progress re feeding but in a good routine of 4 meals a day and 2 bottles.  All food still tinned or baby food in jars - other food causes vomiting issues.  It has taken this long to sort out what Melissa can digest.  Still using isomil formula.  She has a 2 hour sleep each afternoon and bedtime starts around 9pm sleeping through to 8am.  some nights are sing song nights when she just can't get to sleep. a good year healthwise with 2 short spells in hospital - the first she screamed nonstop and was really upset the second her colour was not right and she would not feed or eat for about 4 hours.  Hospital observations provided no answer so we returned home each time non the wiser. Still waiting on a special pushchair cover to allow us to go outside for some walks.  hoping this sharing may help others

sharing a photo waterplay inside as she couldn't play outside without vomiting!🙂