🙂  I wrote this when Melissa was 8 years old when I knew in my heart her care was far too much for one person to manage and Iwas frightened,

Why do I need Help/Support

Time to shower and wash my hair

time to have breakfast

time to answer phone and make calls

to have a cuppa or have a friend over

to spend time in the garden

to go for a walk

to do family shopping

To do Melissa's shopping, get chemist and hospital supplies

to attend Parent to Parent meetings

to go to the toilet

to knit and sew for Melissa and my grandchildren

quality time with family, time to be a mum

to keep in touch with other family members

to sit relax and reflect

to find time for making memories....good memories

to have sufficient time to keep my sanity, time to reflect and maintain my spiritual and emotional wellbeing

Found this it may be of interest :

at birth weight was 2395gm or 5lb 31/2 ounces  `- 1 month was 5lb 141/2 oz length 48 cm.

2 months was 6lb 131/2 oz   3 months was 7lb 9 oz   6 months was 9lb 8oz  and 531/2 cm

1 year  was 12lb 8oz and 61cm.  She smiled at 12 weeks. Sat with help at 11 months but could fall.  Sat alone aged 2.  Rolled side to side at 6 months.   Giggled at 13 weeks.  Was tube fed for the first 9 days.  Teaspoon fed with milk ending up with isomil and solids at 4 months. Had a physio visit each month wit an early intervention programme put in place at 1 year old.

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.

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 3^rd 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.