Ok, enough of this "lollygagging" around. We’ve just finished two weeks of school holidays and it’s time to get on with the next bit of Joff’s story.

Joff was an inpatient for 5 weeks after he was born. He had had his cataracts removed and his “fried egg” contact lenses fitted. He had this very low muscle tone and together we’d dismissed the diagnosis of rubella damage. What next?

First thing they tested him for was Duchenne’s Muscular Dystrophy (DMD). Part of that diagnosis can be done by testing creatine kinase levels in the blood. If they’re high, this can indicate DMD. Unfortunately, if the bloods are taken from the patient at a really young age, you can get a raised level that doesn’t necessarily mean the person has DMD. This happened with Joff. And the frustrating thing for us was that the samples were collected and tested in the lab on a weekly basis. So we had one week for the initial testing, giving a false positive result, and then had to wait another week to retest, which did come back normal. We knew nothing much about DMD but it seemed a very scary and serious diagnosis to have. At one point I mentioned to the doctors that I thought Joff’s breath smelled very sweet and they went away to test for Maple Syrup Urine disease – which coincidentally, one of the other Diary Project Bloggers has...please see Laura’s blog. That test came back negative too.

Meanwhile Joff was failing to thrive, or put on much weight. We never heard him cry in the ward (although the nurses assured us he was more than capable of making his voice heard) and he was still undiagnosed. That 5 weeks were a particular nightmare for Mr Effie with all the driving back and forward he did to the Queen Mother’s from Clydebank to visit, or take visitors or expressed milk. We were very lucky to have support from our folks to help look after Miss Effie Snr during that time.

Eventually, it was decided that Joff had gained enough weight to be discharged and we could all go back home to Lossiemouth. We were given an appointment with the contact lens clinic in Glasgow. That was a right laugh. The lady showed us some wee rubber suction device to help remove the lenses, or to basically use the lower eyelid to prise up the lens from his eye. I recall that appointment as fairly unsympathetic, given that the patient was just over a month old – it was very business-like and practical.  

Anyway neither of these techniques worked in the slightest for us, but we didn’t have to worry too much for now as babies’ tears don’t have the same levels of proteins in them. So we would only need to take the lenses out once a month to clean them.  

As we were about to pack up and go back home, my father-in-law came with a gift for us. He’d gone back to the parents room in the hospital and cajoled the nurses into giving him the poster “Children learn what they live” and went and got it framed for us. It’s still on our hall wall today.

The text goes:-

Children learn what they live

IF a child lives with criticism, she learns to condemn

IF a child lives with hostility, he learns to fight

IF a child lives with ridicule, she learns to be shy

IF a child lives with shame, he learns to feel guilt

IF a child lives with tolerance, she learns to be patient

IF a child lives with encouragement, he learns confidence

IF a child lives with praise, she learns to appreciate

IF a child lives with fairness, he learns justice

IF a child lives with security, she learns to have faith

IF a child lives with approval, he learns to like himself

IF a child lives with acceptance and friendship, he or she learns to find love in the world.