Party time:
We were lucky enough to join one of our local friendship groups for the annual Turner Syndrome Christmas Party. LOVED IT! G had a fantastic time - boogied away, ate party food, and even met Santa. And we had plenty of time to natter all things TS and more. Thank you lovely ladies for organising it. We love the TS family.
G also took party in our church's nativity play, her first ever role as an angel. I was bursting with joy :) Though it appears that even an angel needs her mummy glued to her side!
Nasal swab:
Old news I know -Nasal swab from last week has come back positive AGAIN. I refused antibiotics this time. Why? She's currently on them anyway (though not the necessary ones to treat this specific nasal bug), and has been on and off for the past 4 months. Coupled with an extremely sensitive stomach, and more antibiotics than I care to count in her short near 4 years, no thank you. Nasty bugs:
G has suffered her first winter bug this season. Granted she's had colds and the odd ear infection, but boy they were nothing in comparison. 40 degree + temperatures, for days on end, endless nights of vomiting due to excessive coughing and declining her calendar chocolate. You know she's ill when G declines dairy free chocolate! Chest/throat/ear infection or virus was responsible for her week of misery, but thankfully she's back to her cheeky old self. Demanding calendar chocolate at 6:15am Wednesday morning, and then arguing with me over not wanting to wear jeans, then wanting to wear jeans, then not....we knew she was back on form. Sadly for Daddy Pig, G has shared her germs, so tonight is the second night in a row that I have dinner for one and complete control of the remote. Get well soon Daddy, we love you!
How's the milk trial going?
After saying we were appointment free until after Christmas, one came through. Only the dietician though, so nothing to write home about, though we were a little apprehensive as we'd halted the milk trial due to excessive antibiotic interference. Amazingly we learnt a lot during that appointment....we discussed G's nasal bugs as he doubles up as an allergy specialist too, and he was astounded at the fact that G's Ear Nose and Throat consultant had never investigated up her nose or given her a daily nasal spray. The fact that all that's done is swab - antibiotics - swab - antibiotics was a real shock to him. So our dietician is now writing to our GP to make some suggestions.
No news is good news?
We haven't heard from the endocrine paediatrician regarding G's morning of tests in preparation for starting the growth hormone injection. To be fair, we are in no rush. We wanted G to enjoy Christmas before the trauma that is to come!
We have made some progress though - G is now in receipt of a disused injector pen (thanks N!) which is in her medical kit, and has been used once on her favourite teddy. Also, when G quizzed me on how well she is growing, we discussed that not everyone's body grows naturally and some people need a little help from a growing pen. The seed is being planted...
Sensory processing disorder:
Some time ago I mentioned our visit to the community paediatrician, who did infact take every single one of my concerns on board. Our biggest success has been the acknowledgement of the fact that G does have some sensory processing issues. We have since received a large information pack with ideas/suggestions etc from our local occupation therapy team, which has been a incredibly insightful read. For example....why G seems to need the sensation of bouncing/jumping/being upside down/spinning around. Her receptors crave the extra sensory input. Or why brushing her hair HURTS her so much. Or that her getting excessively emotional about what we deem as 'normal' sounds, and her need for wearing ear defenders sometimes.
Sometimes I feel that no one understands when it comes to G...
'She looks normal'
'There's nothing wrong with her'
'She's just like any other 3 year old'
'Oh well TS only affects her hormones'
It's so much more complex than that! And with each day we are learning more and more about her. Yes she is normal (whatever that is), and yes she is just like a 3 year old, but there are other aspects too. Sometimes so subtle than only those closest to her, those in the know, notice. I will fight your corner always baby girl.
Oh, and did you hear the news? You couldn't miss it - G is announcing it to the whole world! The cheeky monkey has been using said news to her advantage...comments such as "Daddy get down here and cook scrambled eggs for mummy's baby" and "I think we need to buy some baby things for me to use now for my babies and then you can use them afterwards for yours" have caused much hilarity. She knows how to play us.
And in answer to your question (I had the same one too): The odds of Turner Syndrome affecting babe number 2 are no different than it affecting anyone's babe, regardless of a TS history. Initial scans and blood tests are looking positive. I think that perhaps this pregnancy is going to be slightly different from number 1. Not that I would change a thing. LOVE YOU G!!!
So I think that this is most likely over and out for 2016. Sending love and good wishes to all this Christmas. See you in 2017!
