We've had a busy few weeks with lots of check ups, bloods, and visits to various hospitals. Though of all of the appointments we've had, I think Tim was the most surprised to learn of some news regarding his height....
Gastro appointment
A few weeks back G had her 6 monthly gastro check for her reflux. As with all appointments, she was on fine screaming form! Not only that but we were there for over two hours. Deep joy.
At home I'd managed to wean G's omeprezole medication down from 15mg, to 5mg daily, with very few side effects. This news was welcomed by G's consultant. We were told at our discretion to wean her down to every other day, with the long term view weaning her off them completely. I hate her being on medication, BUT they were a lifesaver when her reflux was at it's worst.
We mentioned some of our other concerns regarding G's general digestive system (this isn't the place to discuss the ins and outs of her horredous nappies!), and were then sent in the direction of the blood nurses. She needed an array of blood tests to check out her enzyme levels, to test for celiac disease, and any other general nasties! We plied G with cake, and tried the softly softly approach (along with an overzealous play specialist) but ended up pinning her to my chest until an adequate amount of blood was collected.
We were also asked to provide a stool sample....Needless to say G did not adopt her 'all fours on the floor and strain' position.
Diet/allergy clinic
Our visit to the dietician was relatively painless, screaming aside. We explained the failed milk trial, the every increasing list of food intolerances and the nasty poop issues. G was to be tested for some general household allergies, and we were to restart the milk trial at a much slower pace. Now by much slower pace, I mean painstakingly slow. A crumb of a homemade biscuit with 10g of real butter for 3 days, followed by an eighth of a biscuit for 3 days, then a quarter and so on. Once a whole biscuit was tolerated with no ill effects, up the butter content to 20g and repeat. AGHHHH! This milk trial will take us a good 6 months, and that's the baking alone. Still, like the dietician said, if she can get to a point where she can even tolerate milk and butter in cooked food, then that's a start.
Feeding appointment
A few weeks back we were due to visit hubby's favourite consultant, the feeding specialist. I say his favourite because at the first appointment she virtually accused us of being bad parents for adopting the baby led weaning approach. 'She'll choke!' ..... 'Ok then love but she chokes on purées, and even her own saliva, so what do you suggest?!'
Luckily for him, I managed to convert this appointment into a telephone appointment. After an update on G's feeding, and also her speech, I was greeted with 'wows' and 'you're doing a great job' topped off with 'I think we can discharge G'. Result!
Endocrine appointment
Today was the first of many appointments which will monitor G's height. Later in her primary school years, this team will more than likely be responsible for overseeing G's puberty-inducing hormones as well.
We began by being measured ourselves so that they could calculate G's potential height had she not had Turner Syndrome. My 5ft 9, crossed with Tim's 5ft 6, would have left G with a range of 5ft to 5ft 6. That being said, 4ft 4 to 4ft 10 is a more realistic range for a woman with TS. So, her height will be monitored throughout her childhood, and the minute she drops below the 9th centile (which is where she'd need to be to hit 5ft) then we will begin the process of growth hormones. It is extremely likely that this will happen between the age of 2 and 3 years.
We know little more about the process of administering growth hormones other than the fact that she'll require daily injections for numerous years.
Oh and hubby's news? He's been robbed of an inch. So much for 5 ft 7!!
So, that's our recent update. We've a few more appointments this summer, not least the dreaded ear test that we've had to postpone several times due to various illnesses. We also need to await the results of her bloods, and her stool samples (once the hospital relocate them....).
Ooo and to top it all off, G has discovered her love of Sleep (with the aid of a reduction in a 'sleep disturbing' medication)! Well I say love of sleep, for at least 4 nights out of 7, and until about 5:30am.....
