I've not posted at all in June, eek sorry! It's been fairly quiet on the Grace/TS front, but fairly hectic for us as a family. Some fab times-a trip to the zoo and paddling pool fun, and some not so nice times. Still, onwards and upwards....
First local Turner Syndrome get together
A few weeks ago, we were lucky enough to participate in a local meet up. Two lovely mummies had decided that there was a need for a friendship group in our local area, and I was beyond excited when a date and venue was agreed.
We had a lovely time at a local country park, Grace was in her element! So was I ... It was so refreshing to talk with mummies & daddies who had walked our walk. Despite only meeting properly for the first time, I felt at home. Accepted. Truly understood. Discussions were rich and varied: sleep, toe nails, diagnosis, food, speech, growth hormone, and the cakes were yummy too!
And I'm pretty sure that between us we were more knowledgeable than many health care professionals that I'd come across. Not a criticism. Just an observation.
Another intesting topic was how such antenatal diagnosis are dealt with. How a lack of knowledge was possibly to blame for the offers of termination, the bleak outlooks and the general 'we're very sorry but....' conversations. Again, not a criticism, but I'm sure anyone with an antenatal syndrome diagnosis can empathise with us here.
A few weeks ago, we were lucky enough to participate in a local meet up. Two lovely mummies had decided that there was a need for a friendship group in our local area, and I was beyond excited when a date and venue was agreed.
We had a lovely time at a local country park, Grace was in her element! So was I ... It was so refreshing to talk with mummies & daddies who had walked our walk. Despite only meeting properly for the first time, I felt at home. Accepted. Truly understood. Discussions were rich and varied: sleep, toe nails, diagnosis, food, speech, growth hormone, and the cakes were yummy too!
And I'm pretty sure that between us we were more knowledgeable than many health care professionals that I'd come across. Not a criticism. Just an observation.
Another intesting topic was how such antenatal diagnosis are dealt with. How a lack of knowledge was possibly to blame for the offers of termination, the bleak outlooks and the general 'we're very sorry but....' conversations. Again, not a criticism, but I'm sure anyone with an antenatal syndrome diagnosis can empathise with us here.
Anyway, an extremely positive experience and 'm waiting with baited breath for news of the 2nd meet, as well as trying to contain my excitement of the upcoming TS conference. Three months and counting!
Ear, nose and throat
When your child is petrified of hospitals -no exaggeration-the news you do not want to hear upon arrival to the outpatients department is 'I'm sorry but we have a waiting time of 2 hours today'. REALLY?! Tim and I exchanged looks of sheer horror, politely declined their offer to take a hospital pager and visit the cafe, and told them that in no uncertain terms were we staying. After some negotiation we secured an appointment for 4 weeks time.
The apppintment was only routine, and thankfully the daily antibiotics have kept Grace's ear infections at bay for the past 6 months. The burst ear drum was my main concern.
When your child is petrified of hospitals -no exaggeration-the news you do not want to hear upon arrival to the outpatients department is 'I'm sorry but we have a waiting time of 2 hours today'. REALLY?! Tim and I exchanged looks of sheer horror, politely declined their offer to take a hospital pager and visit the cafe, and told them that in no uncertain terms were we staying. After some negotiation we secured an appointment for 4 weeks time.
The apppintment was only routine, and thankfully the daily antibiotics have kept Grace's ear infections at bay for the past 6 months. The burst ear drum was my main concern.
Food has been less of an issue since I last posted. Well maybe not less but the situation hasn't deteriorated. We are pretty much down to morning and bedtime milk now (if you can call the vile stuff that), and three meals a day so long as they involve sausage, egg or pasta! Raspberries have recently been a hit, and ice pops are a savour in this heat. Grace has several upcoming appointments so we shall know the true impact of the food aversions on her weight.
I must admit my anxiety did go in to overdrive yesterday when I read an article about potential school/nursery lunch box inspections....how true it is, is debatable, but I'd be struck off the list as a good mother!
I must admit my anxiety did go in to overdrive yesterday when I read an article about potential school/nursery lunch box inspections....how true it is, is debatable, but I'd be struck off the list as a good mother!
Summer holiday fun??
We go several weeks without an appointment then we have 5 in the space of 6 weeks. We know how to make the most of our summer holidays.....
We have endocrine/paediatric, ears, community paediatric, eyes and her two and a half year health check. I must always be grateful at how well she is looked after by our NHS system though.
We go several weeks without an appointment then we have 5 in the space of 6 weeks. We know how to make the most of our summer holidays.....
We have endocrine/paediatric, ears, community paediatric, eyes and her two and a half year health check. I must always be grateful at how well she is looked after by our NHS system though.
So yet again that's us until next time, if we haven't melted by then. I'm going to take up Grace's mantra in this heat ...'let's just stay in the paddling pool mummy!'
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