24. Jul, 2013

Memories.........

Life I guess is about memories! Happiness on the face of our wee girl when she moved her walker backwards for the first time! Melissa's face just lit up showing how happy she felt. Music was another enjoyment and even the vibrations the boys made,  received a smiley response. Melissa loved cuddles and when left alone became bored easily.  At times it felt as though Melissa would cry to get attention -  we had learnt to respond quickly in order to prevent the vomiting that would often follow crying.  Melissa became fascinated by her own fingers - moving them and at times would seem mesmerised by them. 

Eye infections presented as an issue. Each morning we had to carefully unstick them.

some of the special milestones

1st (real) smile at 6 months old -  rolling over at 9 1/2 months old - recognised and responded to a toy at 1 year old - at 14 months old Melissa touched my chin, she held it and smiled at me -

17. Jul, 2013

well done to all Mums and Dads and familes who share their journeys!

I feel I need to say it is so uplifting to read other family experiences of living with Trisomy 18.  As Parents we are all told in the early hours of our child's birth - the percentages and statistics of trisomy 18 etc.  We are never told that our children will teach us so much about beauty, life, values and important aspects of life that at times I feel seem forgotten. Life may be short - many lives are touched with each wee child born and it would be wonderful to hear the medical profession could just say - enjoy and love your wee baby and we will help you as much as we can....❤  that is my hope for one day.....

14. Jul, 2013

Tips we learnt along the way.....

Firstly I need to emphasise every child is different.  I can only share what worked for us!

Constipation a real problem - in the first few years prune juice with her cereal helped until about age 3.  It took us a long time to realise her vomiting was due to the constipation!!

Melissa was seldom bathed in the early years.  She got so cold so easily we found tiring her out was unnecessary! We learnt to just top and tail her and use little water on her skin as it became rougher with water and instead we oiled her with cold pressed safflower oil.

Melissa had no immunisations.

When she was upset and cried - this led to immediate congestion causing her to choke that would end in vomiting though this did improve with age.

In hot weather when out in the car Melissa would overheat. We found no way to prevent that! She could also overheat in her pushchair or bean bag.

We always carried a letter outlining Melissa's condition so in the event of seeing a different Doctor the particulars were written down and this saved a lot of time!

Melissa seemed unable to digest our food even when moulied.  She would eat it quite happily but after the meal would vomit... so we found prepared tinned and jars of baby food were more tolerable.

Melissa was fed little and often.  We fed her 2 hourly throughout the day.  Liquid i.e.her Isomil milk was spoon fed - to prevent choking!

We found daylight and open / fresh air would cause her to become congested.  In a glare she would close her eyes.  Dark glasses were tried from age 1 - 3 yrs old but not really successful. To avoid issues we would not have her in a room with open doors and windows. When older she had a covered in pushchair and we could try walks in the evening when the sun went down.

Bringing up her wind was difficult. This was the cause of a lot of vomiting though this improved too with age. We quickly learnt too not to try to force feed her as she would vomit.  She needed to be kept upright after feeding.  She seemed to know when it was ok to eat as she grew older!

 

9. Jul, 2013

Please let me know if you have any questions!

Our daughter was 4 months old before I heard about any support groups for Trisomy 18 - and our care of her was so intense there was little spare time.  There was definitely no me time or us time and needless to add - little family time.  It was day to day caring for Melissa and meeting all other basic needs. It was a huge relief to connect with a family who had their tips and experience to share.  How different today is with the computer age.  Melissa was a lot older when we first went on line! Hearing experiences from others is far far better than just reading the text books which here in NZ were incredibly negative and very few tips for providing care.  I cannot emphasise enough the isolation and fear we lived with. But there was always that but - we needed to have fun and make memories!

Interesting looking back it was me who took our information, charts etc to our pediatrician - it felt like we were educating the medical staff as their response in general was pretty negative.

Our next challenge of how Melissa was  affected by Trisomy 18.

  We started taking Melissa out and quickly learnt by experience that she was light intolerant.  To the point she could vomit. Also overheating was an issue eg when she was in her car seat.  We had to have our vehicle windows darkened and that helped a wee bit.  Her clothes were often damp and were changed often - meaning we had heaps of washing to do.

Everyday Melissa was our teacher - she taught us Pine trees would cause sneezing leading to vomiting - so our first Christmas we had an artificial tree.  And of course she had her own Teddy Bear.  Our first Christmas was so special as from all accounts we were lucky to have made it that far.  I still feel it was Melissa who taught me what it was she needed.  Amazing how someone who cannot speak can still communicate.  Our wee girl taught us so much about life!

3. Jul, 2013

Melissa's own table and corner seat (shown in equipment used)

The occupational therapist gave us a play table that had a corner seat -  the seat had a bit that stopped Melissa from slipping down, as she could not sit unaided. So now Melissa could be seated at her table and be safe.  My next challenge was to find toys that would attract Melissa's attention.  She needed a lot of encouragement to even touch the toys - however over time this did happen!

Melissa gave me her first smile age 6 months old.  An amazing moment.  Her Dad and I at long last now knew our little girl did recognise us!

As we had been told out time together could be very short - as a family we set out to make memories.  I took many photograph as shown in our book but I also took photos for another reason -  to ensure I was not missing anything. 

When you are with someone 24/7 you can miss signs of change which can be noticed in a photograph.