Toast, for breakfast?!

I adore spending time with my little monkey at the moment. She's so funny! She's inquisitive, giggly, and into everything. Tantrums and stubbornness are also something she's discovered-apparently Tim says she gets that from me?!

Community paediatrician visit

Last week I took G to visit the community paediatrician. She will focus purely on Gs development, whereas Dr Rao will focus on Gs health and her Turner Syndrome checks. She was extremely well behaved and performed her best tricks -picking up things with her finger and thumb, turning her head to different sounds, and attempting to lift her hips and knees to crawl. She also threw absolutely everything she was given onto the floor, but in her defence she was given umpteen tasks and tests, and we were there for over an hour!! We didn't necessarily need to get involved with community paed, but the health visitor recommended we did. She said that it's easier to get on to their radar now than it would be when say G has a problem later on in school (not that we expect she will, it's more of a precautions move). 

Anyway, thankfully the visit was a success, and they don't want to see G until she is around 4/5 years old. Development is exactly as it should be :)

Rancid raspberry

Our chemist have been extremely cooperative when it come to G meds, but we still cannot get her to take this darn omeprezole. It's been strengthened so she needs less, and also flavoured (which might I add was a waste of time-no raspberry I've ever tasted tastes like that), but we still cannot get it in to her. It's more crucial than ever as the GP and paediatrician think that her awful night time congestion and cough (which I'm certain are the source of her sleep troubles) are as a result of her reflux not being under control yet. So we now have the medicine coming in capsule form. I will break it up and mix it in with food, and hopefully she will take it. It will certainly be less offensive than the liquid version so fingers crossed.

On a more positive note, the domperidone is helping to reduce the amount that she is sick. We've not needed to change mine or Gs outfit in at least 3 days (no we're not grebs, you know what I mean!).

Eating like a big girl

G LOVES baby led weaning, and so do I! She really enjoys feeding herself, and Winston really enjoys her throwing her leftovers on the floor....

We've had many a gagging incident but I'm ok with that. She's started to chew the food (or gum it!), and best of all it doesn't make her sick like the purées did. Strips of roast chicken are her newest love, as well as melon. However, the community paediatrician thought that baby led weaning was an alien concept, and had the most puzzled look on her face when I told her G had jam on toast for breakfast...and that she fed herself. Baby led weaning isn't a new thing, I just guess that it's not everyone's cup of tea. 

So what's next? We are pretty much done for September now. G has an appointment with Dr Rao at the end of October, and she also starts swimming lessons mid October, but apart from that we'll just keep plodding on!

Ooo whilst I think of it, I just wanted to thank a fab friend of mine who swam part of the Thames for Turner Syndrome. What a super achievement. I also wanted to thank anyone who was able to show their support on jeans for genes day, especially my cousins little girl who kindly donated her tooth fairy money. So much support for our little 45x girl! 

Cucumber, holiday fun, and sleep troubles

Having woken up to the sound of the sea every day for 8 days, waking up without it now sucks! We've been home for nearly a week, but yet I'm ready to go away again. How I do want to be beside the sea...

Gracie's first holiday

We had a fantastic time in Cornwall! Grace was an absolute angel (sleep issues aside), and we all thoroughly enjoyed ourselves, especially the dog who made two new friends. The journey there was a bit of a nightmare. By bit, I mean a lot! The decision was made to travel during the evening. G always sleeps in the car anyway, so it made sense to feed her her bedtime bottle, and then set out around 6:30pm. How wrong we were. She did not sleep. Not at all. Three stops later, and she was a blubbering mess. We finally arrived around 11:30pm (after a getting temporarily lost down a pitch black, single track, steep hill), and it all became too much for G. She screamed the house down for nearly two hours. Thankfully the 13 other members of the house weren't too bothered. It started off as a pretty hectic holiday with the culmination of 15 members of several families (all friends!) sleeping amongst 5 bedrooms, a lounge, a conservatory and a tent, but it was still great fun. By the middle of our holidays it was just us, my parents, our friends parents and the three dogs. We introduced G to cliff walks, soft sand, and mildly warm sea, but what she loved the most was the sea breeze in her hair. Well, what little she has! Whilst we are happy to be home, I certainly miss the amazing views, superb walks, and having the beach at the end of the garden path.

Sleep deprivation

For the past 6 or so weeks, G has had extremely disturbed night time sleep. 3 hours is her best, if we are lucky. Dream feed (10pm) until around 1am is usually the best time. 1am onwards, nightmare. Sometimes she'll wake 3 times between 1am and morning, other times she will wake continuously, so much so that I have barely drifted back to sleep. We are CLUELESS as to what is causing it. I have several theories, and as always teething is at the top, but who knows. I am really starting to feel the effects of this now, and its getting me down. I can function on one or maybe two wake ups, but its been nearly two months since we had that few. Tim, like most men, is oblivious to it and doesn't wake, and to be fair to him he works darn hard at work and I wouldn't want him to be up all night as well. We cannot do the cry it out type methods as when G gets upset, it aggregates her reflux and then we end up in a viscous cycle of crying-reflux-pain-crying.Any ideas anyone? I definitely think its getting beyond the 'its a phase' stage. She is also very clingy at the moment, though that is more of a recent thing but may well be linked to her not feeling her best.

Poorly ears?

Many girls with Turner Syndrome suffer dreadfully with ear infections. For the last month or so G has bad extremely waxy ears, and endlessly tugs at them. I wonder if this could be the source of the sleep problems? She is also extremely congested and coughs a lot. What with the whole ear, nose, throat linkage, and Turner Syndrome, I have been debating taking her to the doctors just to rule it out. Tim jokes that I haven't been in at least a month and that they'll be missing me :)

Weaning update

Cucumber, tick. Pepper, tick. Chips (oops), big tick. Pitta bread, tick. Banana, bluh! Slowly we are making our way through some starter foods. It sounds pretty dull at the moment but I'm trying not to introduce   too many things at once as we need to be conscious of intolerances. G is extremely grizzly at the moment so it's hard to tell if anything is affecting her, but I'm keeping an eye on the nappies as they are usually her major indicators. I'm pretty chilled out now about giving her large chunks of food. She simply sucks on it, and if she's lucky enough to suck any of it off, you can see her moving it around her mouth until she spits it out. Many people worry about choking and baby led weaning/finger foods, though interestingly today we had a gagging incident and it was actually on smooth baby porridge, not the chunky finger food. A friend also talked me into trying her on wheat sooner rather than later (I have a wheat intolerance and wondered if G had inherited that as well as my cows milk intolerance), and no adverse reactions yet. Mind you I'm still waiting for the magic number two so I can double check. Nice!

What's next?

We have just had a letter through from Leicester hospital about arranging an appointment to meet with a gastroenterologist, so I shall be arranging that ASAP. I have also requested her reflux meds to be flavoured as we are still no closer to getting her to accept them. Next week Grace will be weighed again by the health visitor, and I'm pretty sure her weight gain will be as impressive as always.

So, Grace is now officially 6 months old. How time flies. Last week my work colleagues returned to school for the start of the new academic year, and it dawned on me that exactly this time last year we had just found out that there was a problem with the pregnancy. Little did we know that our babe was to have Turner Syndrome, and little did we know that she'd be an absolute miracle and be that 2 percenter who survived.....