Wednesday 29 January 2014

11 months and counting!

Where has January gone?! Between work, hospital appointments, sleep, no sleep, housework (or lack of as Tim would say) and keeping little miss G entertained, the days have flown by. Last weekend saw the dedication of our beautiful babe at my local church. What a lovely service it was, and how fabulous it was to have so many people there that care about G. The bring and share lunch afterwards was pretty amazing too! 
Even scarier than the disappearing days is the fact that we are fast approaching a certain little ladies first birthday. As she turns 11 months on Sunday, we are left scratching our heads and wondering how on earth our little miracle can be turning 1 in just over 4 weeks time! Someone pass the bunting....

Tantrums and teeth
My oh my can our girl scream. She has a scream so ear piercing that she can silence a room. Especially rooms in hospitals and doctors surgeries. Stubbornness seems to be trait of hers that is revealing itself more and more. If she doesn't get her own way then you better reach for the ear plugs. Sometimes we simply sit and laugh, amazed at how quickly she can turn from a happy smilling child to a raging monster (ok, a little harsh I know). I do remember a conversation with Arlene from the Turner syndrome society some 4 or 5 months ago, and her telling me that many girls with TS know their own mind and are strong willed. In Gs case, that's putting it mildly! Admittedly tantrums are always followed by more rounds of giggles and smiles, so she can be forgiven in an instant. Her smile makes me melt :)
Teeth could well be the source of the screaming right now though. With 6 on show and 2 more making their way through, I'd say that could at least be a contributing factor.

Positive appointments
G has had two paediatric appointments this month-one regarding general health and Turner syndrome, and the other regarding her reflux. Both specialists are exceptionally pleased with Her progress, and the frequency of her appointments are decreasing.
We have been told to tweak her reflux medication slightly and reduce it, but it's something I'm considering carefully first. We've only had a settled baby (in terms of reflux) for around 6/8 weeks. The days of hours of screaming and endless car rides at all hours are not far enough behind us for us to dare tamper with the one thing that's keeping our reflux hell at bay. Obviously we don't want her on meds long term, especially the apparently high dose that she is on, but for now we have the battle of dairy reintroduction to face, and that alone won't be pretty.

In terms of Gs Turner syndrome care, we are now being passed over to an endocrine specialist to start discussing growth hormone treatment. Whilst Gs height and weight are pretty stable at the mo, her height is on the lower end of the scale, and over the next 1-2 years is likely to taper off. I don't know enough about the growth treatments to say much more yet, but it's something that will be at the forefront of discussions over the next 12-18 months. 

Any dietary requirements madam?
As G is approaching 1, we have to start reintroducing the foods that she is intolerant to to see if she has outgrown these issues. The main food intolerances are milk, wheat, gluten, and oats, along with rice, apple, tomatoes, pear, mango and a few other fruits causing mild (but still painful) digestive upset. As she has many foods that upset her, we've decided to start with dairy, as that's the one that gave rise to the worst reaction. We are very much NOT looking forward to the weeks and months ahead of reintroducing various foods, but it's got to be done. Fingers crossed that she's outgrown every single one of her intolerances, leaving only me and the dog with our dodgy digestive systems! 

New routines
Since G has started the childminders, she has dropped her second nap. She is so active during the mornings that she simply doesn't have time to nap. So I'm trying to keep that sleep routine going on my days off, but with varying success. G is a tad young for dropping her naps, however in terms of sleep she doesn't conform to the norm. We are lucky if she gets 10 or 11 hours sleep including naps, as opposed to the recommended 12 or 13 hours for her age. I'll persevere with her new routine, and do my best to wear her out during the day in the hope (STILL) that she might start sleeping through regularly.
Speaking of the childminder, Grace has settled really well, loves the other children, and is only screaming for a few minutes when I leave her! Can't ask for much more. 

So out with January and hopefully the rain, and in with February. We've an appointment at the feeding/speech therapy clinic next week, and then for the rest of the months it's work, play and the countdown to THE birthday of the year (mummy's 30th and grandads 60th won't be a patch on little moos day!).
Ooo and not forgetting my very first reflux and food intolerance parent support group tomorrow. I'm a tad nervous but really felt the call to set up a caring, supportive network for local families. If our experience and journey can help at least one other family, then it will be worth it. 



2 comments:

  1. Oh my word. She is adorable!

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  2. By the way… A big thank you for writing this blog. I'm 25 weeks pregnant and my baby has just been diagnosed with TS. There is nothing else like this out there. Your story and pictures have made me excited again about my little one on the way. My joy had been lost.

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