Frustrating Week

Its been a really frustrating week in what is normally a fight to make sure little man gets what he needs this has been a real nightmare.

Where to start ................ First of all we didnt get the delivery of syringes and food that we needed and had a real fight to get anything from them even though little man had no food left............ We did finally get some delivered on Monday and there is supposed to be more on the way.............

Next, is the fight to get little man started at school .......... We now have a full time helper, a step so he can get on the chair and play with the paints and the water and sand............. What we dont have is a changing unit and a private area whee he can have privacy........ Little man is still in nappies as he is on large amounts of diuretics and also has trouble with his bowels....

Then on phoning to check on his cardi appointment which is due next month at our local i was told that he had been discharged from the cardiologist OMG there is only one reason that little man should be discharged and we dont even want to go there.... They have now offered us after intervention from Birmingham an appointment in May which isnt good enough as it means it will be 8 months instead of 6 since he was seen......... So as i said all in all a really frustrating week but in truth all part and parcel of having a special one like my little man.... I dont think there is any of us heartmums who have not had to fight to get even the simplest things and in the scheme of things its so wrong............ I as well as many others spend so much time giving medicines, preparing feeds or food and generally worrying that to spend time chasing such mundane things is frustrating.........