It doesn't get any better

I wonder when things will ever improve. Had to take Ben to hospital last night. He had been in such awful pain, after 3 and a half years I think I know my son so we went to the emergency gp who happens to be one of my best friends. She was fab and openly admits I know a lot more about his condition that her. She was really worried as he was so distended, in a lot of pain and minimal bowel sounds.

So off we trot to the paed unit about 45 minutes away. What a twat of a registrar. The sho was lovely but not impressed no obs or bloods done. All I wanted was an xray to check for obstruction and his tube position and it was ok. They found his bowel quite loaded and blamed that plus an infection in his stoma that has probably gone into his stomach for the excessive pain. 3 hours later with a load of antibiotics we were home.

Then we got a letter from the LEA saying Ben would be assessed in a few weeks by the specialist teacher. No mention of funding which made me think we'd been turned down. Several phone calls later I was told another letter was coming out saying we'd been allocated 1.5 hours per session of 1 to 1 help. The session is 2.5 hours. OUr nursery will appeal but in the interim we will hopefully pay for the extra hour.

I am so fed up of everything being a constant fight. We know it will be to get the help at school.

Our dietician is ringing tomorrow to make our next plan and we see the physio tuesday.

The steroids seem to be helping Iz will just have to see what the next plan is with her.

Ben not going to nursery tomorrow. Between his infection and a tummy bug going round there it isn't worth the risk.

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