I think G was secretly chuffed to find someone else with similar food intolerances. We still don't know if her issues with gluten are caused by coeliac disease, which is linked to Turner Syndrome. I'm not brave enough to feed her gluten every single day for 6 whole weeks!
She told me the other day that she would like to open a gluten and dairy free restaurant where she could eat everything on the menu. I'll be her first customer...
G has been having ongoing tummy trouble, and since she's no longer under a dietician or gastroenterologist, I took her to our GP - six months plus of daily tummy woes is quite long enough. He's concluded that, once some bloods have been taken (AGHHHH) just to cover all bases, it is most likely to be 'anxious tummy' 'reflux/heartburn' or a mixture of the two. So once I muster up the courage to take her to the hospital for what is now SEVERAL sets of bloods, we will hopefully know more. And at the very least try her on some reflux medication.
In other news:
SCHOOL NATIVITY: Well I never, did you ever hear of aliens at the nativity?! Little G stood proudly on the stage at this year's school nativity and recited her multiple sets of lines whilst doing her best alien impression. This babe has taken 4 years to stand on the stage at the annual Turner Syndrome show WITHOUT bursting in to tears, running off, or point blank refusing to join in with one dance. So we were incredibly surprised at her willingness to partake, and her confidence. We were beaming with joy as we watched alien number two...
WINTER GERMS: G was doing so well with no ear infections and just a streaming nose (nothing new there). So when she started having temperature spikes of 40 degrees in the penultimate week of term, we knew she was ready to crash. One dress rehearsal, two performances, one panto, two sending homes, a fainting and vomiting episode and lots of scary temperature spikes later, and G was done. We called time on school two days early as our poor girl was exhausted and drained. She's still not right, but at least we have another 8 days of not having to rush up and out to school. Whether her low immune system is linked to her Turner Syndrome, I'm not sure, but this year we've had a slightly better run up to Christmas than normal. I'll take that!
SCHOOL PANTO: She went! She was determined to go. I so wanted to be there with her. I KNEW she wouldn't cope. That the lights, the sound, the worry, the potential of 'baddies' would be too overwhelming. And it was... However for what it was worth, her teacher got her through. She was in tears for quite some time, and wanted to leave, but they pushed her through. G has since talked about the panto - the bits she enjoyed, and even getting her little brother to re-enact some of the boos and hisses. But that said, she's already told me that she won't be going next year. And nor will I make her.
ANXIETY: When G told me that on Friday's she had been sending her friends in to the playground to look for a boy who had once, on a Friday, pulled her glasses off her face and thrown them on to the floor, I knew she was struggling with her anxiety. When she started getting upset from Wednesday night onwards, not falling asleep until gone 9/10pm and having epic morning meltdowns (more so than normal). I knew we needed to do something. This one incident at school is not the sole cause of her anxiety, she has anxiety about many things (not being with me and her brother during the day, having to sit still during phonics, going to swimming), but it reminded me that she doesn't have five year old levels of anxiety. Her levels are FAR, far greater.
Now I am on a mission to get some support for her. Starting with school, and her paediatrician. Anxiety is associated with Turner Syndrome, and it's a trait of both mine and her dad so she almost has a triple whammy (sorry babe!). But we'll do our absolute best to help her. Calming music, a fibre optic light and a lava lamp are currently being trialled at bedtime. She was asleep by 8:15pm this evening :)
So, apart from still having not taken her for THAT blood test, that is us.
Hoping you have had a joyful Christmas, and wishing you a peaceful New Year full of love and kindness.
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