re environment

26. Oct, 2019

Came across this the other day written when Melissa was eight years old.

Melissa has congenital heart disease, photosensitivity, feeding problems, slow weight gain, developmental delays, recurrent coughing and choking episodes.  Her sleeping pattern at night is largely governed by her environment, this has been so for all her life. Melissa’s body and breathing problems are effected by air – her bedroom cannot have open windows at any time – if inadvertently they have been opened during the day an hour or so into her sleep she will wake with congested breathing and need to be kept upright to cope with swallowing and choking. Hence supervision was necessary when she slept. In winter we trialled a dehumidifier and it seemed to provide an ideal environment and allowed peaceful sleep and fortunately our hospital provided one making a huge difference.

13. Aug, 2019

Summary of Melissa’s needs when she was aged 7

As written by her Paediatrician

Melissa has Trisomy 18 with a number of medical problems.

Congenital heart disease – she has never had congestive failure or definite central cyanosis but does have clinical signs of pulmonary hypertension, a systolic thrill and a pansystolic murmur without any mid diastolic murmur or 3rd heart sound. Previous ECG showed a VSD but the most recent echo suggested there was some over-riding the aorta. No surgery is contemplated because she is asymptomatic from the cardiac point of view and it would be hazardous.

Photosensitivity.

Difficult feeding and slow weight gain (although satisfactory for children with Trisomy 18).

Developmental delays.

Recurrent coughing and choking episodes – it is hard to be sure whether these are mechanical, infective or related to allergies.  Melissa is difficult to cope with when she gets unwell as her food and fluid intake diminish.

We are happy for Melissa to be admitted to Ward 3 at any time but this isn’t necessarily helpful for Josie as she is much more skilled at giving the meticulous nursing acre that Melissa requires, than anyone else could be.

12. Mar, 2019

this is the card we would show Melissa to ask her if she wanted a bicycle ride!

29. Dec, 2018

🙂  Belated Christmas wishes to everyone -I still find it a difficult time.  Family is so important and there is little one can say - however our memories are so special and with us for ever!

Also I do hope 2019 is a great year for everyone!

20. Nov, 2018

Just sharing some feelings.  Life changed me forever after the life and passing of our beautiful daughter Melissa.....maybe as I get older I understand more - not sure about that! But I know I see things differently from our experience, my values are different from a lot of our friends. Memories are still very clear and even sometimes a conversation can be difficult with someone who does not really know me. Living disability and with a fragile hold on life does change things and I feel I am still trying to understand that.  

 

🙂