This past year G has shown how incredibly resilient she is. She’s coped with several big changes: starting on oestrogen patches, moving out of her comfort zone of primary school into the big wide world of senior school, and being diagnosed with autism but to name a few. But here she is nailing life, not letting any label define her. Being her God given self.
APPOINTMENTS:
- This past 24 hours G has been wearing a heart monitor. It’s just routine, but she’ll be itching to tear the sticky pads off!
- We had our annual visit to Oxford in November to check on G’s bicuspid aortic valve, which is still functioning well. And her mildly dilated aorta is growing at the same rate as she is, so it is still in the safe zone.
- Last month was G’s endocrine appointment. Sadly our paediatrician has now moved on, so we have a new paed who is guided by a visiting endocrine specialist. As always, I went in armed with information from the Turner Syndrome annual conference, and a list of questions, and left with answers and reassurance. Plus she has finally grown!! After 3 years or so of minimal growth (2cm ish per year), she has grown a whopping 5cm in one year! I should think so too after 8 years of daily growth hormone injections, and a boost from the oestrogen.
G has been on oestrogen patches now for 7 months-1/4 patch for half a week initially, and now 1/4 patch twice a week. The process of introducing oestrogen will take around 2 years, and then progesterone will be added in. Thank goodness I myself am on Hormone Replacement Therapy-I understand most of the jargon!
- Last week we visited the Ear, Nose and Throat department after appointments being cancelled for the best part of 18 months. Her hearing has improved slightly, and she’s all good for another year.
- Last spring we returned to the community paediatrician to further pursue a diagnosis of autism. This is something we’d visited previously but as she did not ‘present’ with symptoms in school, we were not successful. Frustratingly, many girls are AMAZING at masking, and for G it wasn’t until she hit year 6 that she could no longer continually keep that mask on. Thankfully, she fully embraces being herself, and both her primary school and her new secondary school have been able to put things in place to allow school to be as comfortable as possible for her. She is so incredibly happy at ‘big school’, real answer to prayer.
- We are awaiting an osteo appointment as G’s toes are either hyper mobile or possibly growing in a slightly irregular fashion. Hopefully it’s the former-she has hyper mobility in her hands so it would make sense. That said, muscular skeletal issues can occur alongside Turner Syndrome.
In other news, again we were lucky enough to be gifted a Christmas Day trip by the rare disease trust-Sandcastle Santa. An amazingly generous charity, look them up if you have ten minutes.
Recently G joined a local theatre group, and took part in her first Panto this Christmas. It was amazing seeing her confidence grow, and her friendships with the cast.
In June a beautiful Guide Dog Stud dog joined our family. Oh my, the kids adore him. He’s a beautiful, near two-year-old golden retriever and G has designated him her unofficial assistance dog. If only she could take him to the hospital with her. But, his main job is ensuring there are future guide dog pups to train up and become little life changers, so I guess he’s busy enough!
Finally, March sees G turn 12. TWELVE. Honestly, where is time going?
As always, we are immensely blessed to have this beautiful babe as our daughter. Still beating all the odds!
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