I will tell you now that she has been diagnosed with Coeliacs disease just to stop the worry and and save you reading what was going to be my long winded recount of events.
She is still in hospital, she has lost weight, all her muscle tone is gone,her little bottom is gone, fat stores are gone, her arms are about an inch in diameter, she was 9.7 kg that is two kg below the third percentile, she is three years old.
I couldn't help but feel that we should have acted sooner or that we should have kept up with her health checks, all our kids are small so we just assumed she was small too. I know that we fed her well and that we always made sure she drank, but when you see your child on the emergency bed and they look scrawny, pale and have a distended belly you cant help but feel like you did something wrong. But I know now that no matter how much she would have eatten on her current diet she would still be malnourished. Without us knowing her body stopped absorbing nutrients and fats, her immune system was in shut down, she couldn't even move from wherever you last placed her last, she'd fall asleep in that spot.
The illness was too quick, unrelenting ,the lethagy and and weight loss took a very big toll on a little person. With symptoms of intermittent vomiting and diarrhoea we thought as did the GP that she had gastro.
I never would have even thought coeliacs was like this at all. I didn't know much about this disease I only knew there was such a thing and that I was glad I didn't have to worry about it, It seemed like a difficult thing to live with.
I also didn't know it could present in such a way and I wasn't aware one could become so ill just from gluten and that It's affects over time were so damaging, cancers, osteoporosis, chronic fatigue and damage to the small intestine and not to mention all the other problems with the gut that one might just live with.
The wait this week to find if her screening was positive has been long and frustrating. We filled our time reading books when she felt up to it, cuddling lots and lots ,so many cuddles it's been so nice. All the time her condition has not improved, yesterday was our better day and we thought she was on the mend, today she slumped again. Today I had to continue feeding her gluten foods even after learning of the positive result this morning. Her diet needs to remain the same for the tests being done today. Feeding your child something you know is making them ill, was so hard, it felt like I was giving her poison.
Our priority has been to have her gain weight whilst we waited for the result. I went home on Tuesday and made her favourite thing Lentil curry and rice. This morning she had it for breakfast even, as we were up too early for our breakfast tray and she was hungry" now"
Circe's only concern in all of this has been for her poor tiny hands and her sucking thumbs,each hand has been poked with cannula and tomorrow one will have to be re cannuled.and again a thumb will be out of action.
Today she became very concerned and rather distressed when the paediatrician was talking about how she will grow bigger and thrive on a gluten free diet. When he left she said " I don't want to grow I want to stay small" she thought he meant she would grow bigger straight away.
I am so relieved that this was caught early and that the doctors at The Royal Children's Hospital here in Melbourne are so darn good that I can easily place my faith in them and hand my child over to them today when she has an endoscopy under a general anaesthetic. I am still scared and nervous but I know she is well looked after.
