Today Millys dad took her for a short walk down the road, Even though it was a short walk he had to still take the Oxygen tank with him even though i insisted he take the suction machine he didnt.. Iam unsure if i felt anxious because i could not see her or because if something happened i was not there to help her, he was gone maybe 5 minutes before i returned back to the house from the driveway and got the house keys and walked to the corner so i could see them Milly was fine she was with her dad but i couldnt help but think of OTHER things happening

I have been saying for awhile now i should start taking her for small walks but with todays small walk down the road it made me realise im not ready.. Why???? the feeling when your child is not breathing and requires more equipment then what you have packed and squished into a pram is not good i have had this happen to me and wish never to relive these moments again.

It is the same feeling i got when we had our first black out with Milly at home luckily my sister in law was with me this time after a couple of minutes of no power Milly became unsettled and required the use of her medical equipment which only 3 of the 6 machines work with out power they went flat after 1 hour,after that event i purchased new equipment that now last 13 hours with no power and we now hire a oxygen tank for emergencys and plenty of torches for every room in the house.... the feeling of not having the medical equipment you need to help your child is beyond words Unsure what she may do or may need..