As G missed a few appointments during the initial phases of lockdown, we had a stack of clinics to attend once it was safe to do so. And over the recent summer months as the COVID stats got better, it was safe to do so...
Heart - We did worry this one would be postponed again, but thankfully the start of the 2nd lockdown is still a few days away, so G attended with daddy. This annual appointment is in Oxford, and usually we'd both go but due to COVID restrictions, and H's nursery hours, I didn't go. I HATED IT! I've been there for every heart appointment at John Radcliffe since birth, infact before birth, so I was more than a little uneasy about not attending. Thankfully nothing significant had changed since her ECG and scan last year. Next year however she will her her first ever MRI so that they can get an exact picture of her heart in general, get a clearer view of her bicuspid aortic valve, and take accurate measurements. I will be there for that one.
Ears - G is due a hearing test ASAP as she has been having some problems with her bad ear, namely random temperatures in JUST her bad ear. There has been no real explanation offered for this occurrence so hopefully the next appointment will shed some light on it.
Endocrine - We missed our 6 monthly paediatric endocrine appointment this April, and were due to have our joint clinic with the visiting consultant last month. Said consultant did not visit, but we did get to meet with G's paediatrician who was able to give us enough information to keep us satisfied. She is growing, WOOHOO, always the main goal! 7cm in 12 months, which again falls within the normal range of 5-8cm. Her growth hormone levels are higher than normal, but they always are. So long as we are monitoring for any undesirable (and potentially dangerous side effects), then she is able to stay at her current level of growth hormone. She still regularly tells us that she doesn't want her daily injection, but she definitely is far more aware of the benefits.
Community paediatrician - I recently called the community paediatric team for an update, and we are on a waiting list of 300+ at the moment. 300 who need either a school visit or a clinic assessment from the ASD team. We're not far off being at the 2 year mark of when we first started the process and we haven't progressed very far. No real problem with this, but it would be good to to speak to someone at some point.
In other news
G is back in school and was loving it! Initially she couldn't wait to get back. Four months into home schooling and breaking up for the summer couldn't have come soon enough - neither me or G were fond of the idea anymore. She was desperate to get back into school and see her friends. Though her desire to return stemmed more from the anxiety over the unknown: her new classroom, new classmates and new teacher. After all she was not only transitioning from one class to the next, but from infants to juniors, and one school building to another. Transition in any normal school year is a big thing for her, so a transition that wasn't going to be physically possibly resulted in a lot of what if's for G. Fast forward to two weeks at home for half term, and a lovely break at her favourite caravan site in Norfolk, and she's back to not wanting to go to school. Took longer than I thought for the novelty to wear off!
G moved up to Brownies from Rainbows during lockdown. Of course, this is all taking place over Zoom but it was an exciting milestone for her.
The Turner Syndrome Support Society held a mini Zoom kids club meet last weekend, which G loved. We attend the annual UK TS conference every year, and whilst this year would have been our first year of not attending (the UK were due to be hosting the international conference in July), we still felt a tinge of sadness come October. For us, October is all about the Turner Syndrome conference! It's such an uplifting and important event. So much so that many of us start counting down at the end of the summer. But Arlene and the society did organise a zoom kids club, which included a magician, and was wonderful for the girls. The giggles that were coming from the kitchen on Sunday morning were such a joy to hear (G loves a classic, slapstick comedian/magician!). We cannot WAIT to attend the next conference.
COVID-19 thus far has not affected us personally as a family, but I know that thus far are probably the key words. We did not need to shield for G, and her heart condition was the only real concern but even then it was not significant enough to need to shield. That said it worries me most days, but then that's just general COVID and anxiety for all of our family and friends, not TS specific. Not specific to me.
So that is us, that is G. We are ok, more than ok most days. We are taking a day at a time, and we are remembering to always be grateful for what we have.
