Wed 06 - Audrey got back to work - I had bit of a weepy morning - not good on my own.
Called up to see Ruby ( my mother) after tea time - wants us to use whatever savings she has to help Ellie in any way possible.
The next few days were a mixture of highs and lows - on Sunday I got a bit impatient behind a lady in a local supermarket - her small daughter turned round and smiled at me - she had Downs Syndrome - talk about feeling bad. Forced ourselves out in afternoon - went to local beach - man serving us ice cream from a van commented 'we don't know how lucky we are' - nodding in the direction of a group of people with learning difficulties. Strange when something is troubling you constant reminders seem to be all around.
Mon 11 - On way to gym in morning I was playing Emmylou Harris/Mark Knofler CD - All The Road Running - track called Love and Happiness came on - lyrics expressed how I was feeling about the wee lady - cried - Jani didn't phone in evening - always bad sign
On Tuesday Audrey spoke to man from Northern Ireland involved with PWSA - heard some good things and bad things - I listened to the Love & Happiness (L&H) track over the next few days and found I was able to handle it better - Jani phoned on Wednesday wee lady smiling and cooing - first genuine response from her - Jani sent first photos since Ellie's diagnosis.
On Friday (15) I booked three tickets for Jani/Ali and me to go to a Blues Brothers show on Oct 08, and on Saturday we decided that we would use some of Ruby's money to get private massage sessions for the wee lady, to see if muscle tone could be improved. We went for a run with Ali/Hannah in afternoon - on way home L&H came on in car - I made point of saying how I felt about it - mistake - more tears.
Usual Sunday (17) - everybody quite flat - don't like Sundays - on Monday my youngest brother Adrian( lives in Belfast) came down with Ruby - he didn't know what to say ( hadn't seen him since wee lady diagnosed) - Ellie had first massage session on Tuesday - Audrey gave in to going for check up at doctor - still very weepy - got on o/k - no medication offered - wee man won dancing competition at nursery.
Thursday 21 - Jani in very bad way - wee lady had bad reacion to first injections - very distressed and making pained noises ( still can't cry)- Jani convinced she has more problems than PWS - all in bits again.
Decided over next few days would have to pull myself together - know my demeanour affecting everybody - not fair on Ali as I'm not giving Hannah 100% attention - took first photos of her ( since Ellie's diagnosis) on Sunday.
Monday 25 - Decided to phone doctor for check up - determined to stay healthy - Jani went to an outside spa in Edinburgh in evening - really enjoyed it - dreamt at night that Luke and Ellie were reciting nursery rhymes - Ellie was word perfect - wee man gave his definition of graffitti -
' bad boys with big pencils'.
Had appointment with doctor on Wednesday - broke down completely in front of him - felt so foolish - condsiderd not carrying out examination as I was too upset - calmed down - thought blood pressure bit high - back in month for results of other tests. Bought blood pressure measuring machine.
Managed to get couple of laughs from Jani on Thursday - good sign - on Friday 29 - got call from doctor - back next week re cholesterol results - we went up to Ali's after Audrey finished work
Saturday 30 - Audrey had talked about ' brightening up her wardrobe ' ( another good sign) so we went shopping in Enniskillen - no luck - went for beer in Manor hotel - Ali went to gym and then joined us - everybody seemed quite relaxed so I finished the month off with a couple of brandy and ginger.
