Soggy cornflakes and cold tea!

I'm one of those people that needs to eat my cereal within minutes of pouring the milk. I like it crunchy! Tea, I can drink it scolding hot. This morning I realised that I've actually become accustomed to cold tea and soggy cereal. I wouldn't go so far as to say I like it, but if it means moo gets to finish her melon (that she has thrown on the floor and I've picked up at least 50 times) then I'm happy.

Gastroenterologist appointment

So in my last post when I said we were done for appointments for a while, it had completely slipped my mind that we had a long awaited gastro appointment. Dr Rao had referred us to another hospital she no longer felt she could help with Grace's reflux issues. So on Tuesday we entered the realms of a new paediatrics department. My goodness me, what an experience! The waiting room was buzzing with toddlers and teens, tables with games, and children desperate to put more glue on their pictures. For a children's department of a hospital, it was a pretty sweet place though. Our gastrienterologiat made me recall Gs little life so far, including pregnancy and birth (I need a small essay to hand anyone else that asks!), and what medication she's on. She concluded that there's no doubt G has a decent case of reflux and also milk intolerance. However above and beyond that we learnt very little more. Her meds can be increased as she's on the lowest dose, but you know what I think about giving her more drugs! We were also sent to see the resident dietician who specialises in allergies and gastro issues. He was nice and helpful. We are to now avoid wheat, soya, dairy and test egg before avoiding if need be . One thing I learnt is that tomatoes, strawberries, oranges and coloured fish contain histamines. Due to this very nature they'll bring on a rash but not necessarily mean the babe is allergic. 

Anyhow, the long and short is that Gs barium swallow study will now be booked to check that there is nothing anatomically wrong. Apparently a ph study is not necessary as she thinks Gs acid levels will be low due to the medication on she is on. We will be back to see the gastro team in 3 months. 

Breakfast.....baby wipes and bath flannels please mum!

Weaning hit a brick wall last week. We had lots of explosive nappies and various food culprits due to my eagerness to introduce new foods. So we are back to her 4 safe foods, and introducing one new food every 3 days. This week it's apple. Melon is still a firm favourite, however baby wipes seem to be THE best thing ever. The minute she sees the pack, whether it be at the end of the meal or during, then that is all she wants. She throws the biggest hissy fit if she can't have one. It's funny really, if she had her way she'd eat her bath flannel and baby wipes for breakfast lunch and dinner!

A reminder that she's mobile

G cannot crawl yet, however yesterday morning she gave me a stark and pretty scary reminder that she is still mobile. Without going in detail (and being judged for being an awful mother!) she had a minor tumble. Needless to say I was in a worse state than her, and after ten minutes of cuddles with mummy, Rosie rabbit and her dummy, all was right with the world. Lesson learned....

Turner syndrome support 

I've recently discovered their Facebook page, and finding lots of useful nuggets of information on there. For instance, I joke that G is high maintenance as she's like a Duracell bunny, she cannot be still for a second. Constant entertainment is needed. After reading a post on the FB page, I learnt that many TS girls are high functioning. Two thirds of them also have sleep problems. That is G down to a tee. The Turner syndrome society also have an annual conference every October. I'm gutted that we are not in a position to attend this year, but very much looking forward to signing up next year. 

So that's another update done. Time is flying and G is now 7 months old, ahhhh slow down time!! She's now sitting up unaided most of the time, apart from the odd face plant! 

This next week we will be seeing several mummy and baby friends. G will also get her first experience of lots of people and loud music as me and my mum hope to attend our churches 40th anniversary celebrations. Hopefully she'll have lots of gorgeous smiles for all of the lovely people who prayed so hard for her during my pregnancy and her time in special care. 

Ooo that's my cue to sign off, her hour long nap is over :) 

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.....

Paediatrician update!

Finally the weather has cooled down a little bit. Though the closer we get to our holiday in Cornwall, the more rain we seem to be getting!

To our paediatrician's amazement.....

Last week we met with Dr R for Gs 6 month check up. We weren't sure what to expect, but what we hadn't banked on was Dr R's surprise at how well G is doing! 

Upon arrival G kept all of the other children in the waiting room entertained by energetically jumping up and down on the seats (the downside to loving her bouncer is that she now grabs every opportunity to put her little feet on a surface and jump!). She then screamed the place down when it came to being weighed. I couldn't believe it when Tim reemerged with a grin on his face and proudly announcing that she was now a healthy 16lb. 

Clinic was running late, but we soon saw a familiar face and were welcomed in to the consulting room. I was armed with a list of questions, but thankfully the Dr had plenty of time for us. The long and short of it is:

- G is being referred to a gastro paediatrician at  a different  hospital. Her ongoing reflux issues seem to be out of Dr Rs general paediatric remit. She had hoped that G would have grown out of this now, but unfortunately not.

- She will have a barium swallow study done to see if there are any underlying reasons for the ongoing reflux. 

- A prescription was written for domperidone which is a drug that will make her stomach empty faster, thus hopefully reducing the amount of material in Gs tummy to be sicked up (we hope!). Although as the two other drugs have proved, getting the actual medicine into her may be the biggest hurdle. 

- We should go full steam ahead with weaning, though due to the increased sickness from purees/porridge/rice, we should focus on finger foods and baby led weaning. 

- I need to take G to our GP to see if she can be referred to a podiatrist for some specialist foot care. 

Dr R will see us again in three months to see how things are. She hopes that the reflux will be a thing of the past, we do too! As for Turner Syndrome related issues, there wasn't really anything to discuss this time as she is doing so well. Yay for a healthy G :) 

Our first family holiday 

On Thursday we will be packing up the baby, dog, and house, and setting off for our first ever family holiday to Cornwall. We will be meeting up with my family and some friends, and are very much looking forward to relaxing, and introducing G to the amazing sights of North Cornwall. I cannot wait to smell the sea air and let G feel the sand between her toes. What I can wait for is the mammoth 5 hour journey, and a dog that is petrified of travelling. We'll be visiting the vets this week for some tablets to knock me, sorry, Winston out! I'm also not looking forward to packing. I've a list 3 pages long, but luckily Tim has a 6 seater transit van which could fit even the kitchen sink in. Phew!

Beating baby boredom

A brand new jumperoo arrived yesterday. It was a bargain price from Asda, and we are hoping that it may help to alleviate Gs boredom. She cannot sit still for a second at the moment, and unfortunately due to the ridiculous amount of vomit that shoots out every time she so much as wriggles, she's getting very frustrated. Her feet can't quite touch the floor at the moment, so the Next catalogue is doing a grand job of helping her to bounce in the jumperoo. She isn't totally bawled over by her new toy, and would still rather be 

in our cheap and cheerful door bouncer, but heyho we'll keep trying. 

So, next time I post, hopefully we'll be thoroughly refreshed from our hollibobs and ready to face the run up to Christmas (I know, did I really say the C word?!). Also, I have just read a book on baby led weaning, and am excited to get going with that once we return. Oooo and little moo will be 6 months old. HALF A YEAR! Wowsers.....

Weaning-a help or a hindrance?

It's still so hot. The baby still doesn't like it. I still haven't taken advantage of the tropical weather and bronzed myself!

Intolerant to carobel

I know that when we tell the paediatrician this, she will refute it. However, we are 99% sure that G is intolerant to carobel (a thickening agent made from locust bean gum). After refusing to believe that it was her milk causing the awful nappies and mucus, we experimented by taking G off of carobel several times. Within 24 hours her nappies were normal again, and no sign of mucus. Within 12 hours of putting her back on it, the explosions and mucus were back. It's a shame really as the thickener was really helping. She was hardly ever sick, and most of the other reflux symptoms had subsided somewhat. As the gp cannot prescribe any other thickeners (due to her age) we are now using baby rice, which is nowhere near effective, but a tad better than constant projectile vomit!

Weaning, the solution to our problems?

Guidelines are always changing. Wean at 4 months, wean at 6 months, weaning will help with reflux, weaning will cause more problems. So, at 5 months, and with G still point blank refusing her reflux medication, we've decided to take the plunge. Not three course meals and the like, but just some baby rice, maybe porridge and some tasters of fruit and veg. I understand the theory that more solids in the stomach will weigh down the contents, and thus resulting in less reflux episodes. I just hoped it would work.

Week 1 began with baby rice, thankfully no intolerance or reflux issues.

Week 2 saw the introduction of pear, less acidic than many fruits, and supposedly gentle on their tums. She devoured it! After 2 days, it was evident that it was going down a treat. However, at the same time the wheezing, coughing, congestion, constant moaning and squirming, extreme vomiting and screaming were back. At first I didn't link the pear and the reflux. Teething maybe? But after putting two and two together, and stopping the pear, it was evident that it was the culprit. Oh pants, I really thought that weaning would be our friend, not enemy.

After a several unsettled days (for both G and myself), I decided to man up, go back to baby rice, and google reflux friendly foods. Not quite so easy! Whilst there are obvious ones to steer clear of (citrus fruits, apples etc), many reflux babies react differently to different foods. Many can tolerate pear, some can't tolerate carrot, many steer clear of banana and broccoli. It seems that trial and error is the way forward, not something I am particularly looking forward to, but there's no other way of determining which foods do and don't agree with her. I'm starting next on root veg, surely I can't go too wrong?!

Rolling over milestone

For over a month now, G has been persistent in her perfection of the back-to-belly roll. She would even practice in her sleep! Well this weekend she finally mastered it, and we got to see this momentous occasion.....on video! G had only gone and picked our first weekend away from her to perfect it. Still, when we returned, she was a total show off and we got to see this occasion relived all of Sunday afternoon (and evening, when she should have been sleeping!).

First night away from G

As a celebration of our first wedding anniversary, Tim and I went away to Stratford for the weekend. We left G with nanny and grandad, knowing that she would be well looked after, and spoilt with love and cuddles. 

These days we can usually get G to bed with only a few tears, at least 5 days out of 7 anyway. Well G didn't fancy playing ball for my mum and dad, and played up on Saturday evening. Woops! We were assured that she was an angel for the rest of the time, and letting nanny and grandpa be the first to see her roll over more than made up for it. Did we enjoy our time away, or fret? Well we had a fab time, and I only text my dad two or three times. Doesn't mean I didn't worry, but I just knew that we needed to make the most of our time together. It was also Tim's  30th birthday, so a well deserved treat was in order.

Paediatrician appointment

Tuesday will be our first scheduled appointment with  Dr Rao. We have obviously already seen her in the early days due to Grace's milk and reflux issues, but this will be our first Turner Syndrome related appointment. We know that she will be weighed and measured, and that we will discuss her development so far, but above and beyond that we don't know what else to expect. Maybe some information on growth hormones? We definitely need to discuss her reflux medication and her nail issues.

For now we'll continue to battle with the heat, and to experiment with different foods, but we'll also continue to enjoy how fabulous she is. She is changing everyday. Her personality is developing, she is into everything, and she absolutely loves smiling (especially at the dog!). Regardless of the issues we face (albeit not serious, but testing at times!), we sure do have one beautiful babe! But then we are biased :) 

Back to square one!

I started writing this post on Monday...G hasn't had the best of weeks so I've not been good at finishing anything! 

Horrible heat 

I will probably get lynched for saying this, but we've well and truly had enough of the heat. G cannot cope, and nor can I for that matter! She's not sleeping at all, no naps, no regular bedtime, and being wide awake at 4am. Infact as I type this at 9:30pm she's wide awake after hours of screaming!

This time last year you'd have caught me out in the garden catching a cheeky tan, but not this year. I would however like the tan, just without having a melting baby. 

Reflux nightmare

For some unknown reason, after three weeks of relative calm, Gs reflux has returned. With a vengeance.  The wheezing, congestion, projectile vomit, screaming all evening, squirming, refusing some feeds. Our evenings are again taken up by viewing the local countryside....from the car. I'm not convinced her medication is helping one bit, and neither is the heat. But nearly 5 months in, surely we could be able to find a cure?! Or at least get it under control.

We are due to see the paediatrician at the beginning of August. Lets hope she brings her magic wand.

Ingrown nails

Girls with Turner Syndrome often have problems with ingrown nails. G had an extremely sore and slightly infected finger nail last week, which thankfully has gone of its own accord. However this week she has an even nastier toe nail. It appears to have grown into the side of her big toe and is rather red and swollen. What a bizarre outcome of missing a chromosome! 

Playing detective

G has been having showing some signs of intolerances this last three weeks. Given that she's only on super duper hypoallergenic milk, and milk thickener, there's surely only got to be one culprit of the two. The Gp suggested changing her milk, but after doing so three times already, I've decided to change the thickener first. Lesser of two evils and all that. After a week of no diarrhoea I'm now trialling the thickener again just to double check. This little monkey is going to be intolerant to everything at this rate. 

Happy times too...

G still beams at us first thing in the morning (albeit at 4am), loves to talk to us, and is getting more mobile by the second. She's loving her door bouncer, is extremely close to rolling over, and generally won't stay still. She even engaged in some wrestling with her buddies whilst us mothers sat and drank coffee (and took plenty of snaps of course!).

My aim for the next week....To continue to enjoy the weather, yet keep my monkey cool, and enjoy the good things to come: Mine and Tim's first wedding anniversary next weekend. We are going away for the weekend and leaving G in the capable hands of nanny and grandad. Lets hope things have got better by then!

It's also Tim's 30th birthday soon. I still stand by the fact that bringing our little sausage into the world is his birthday/anniversary/Christmas present for at least the next year! 

Remembering how blessed we are

It's been over two weeks since I last blogged and we've been super busy. At 18 weeks, G is changing everyday. She's desperately trying to master new skills such as sitting up unaided, rolling over, and thumb sucking! And she's now become an expert in cooing, babbling and bouncing. 

Counting our blessings

This last week I've very much been thinking of a family and the sad loss of their brave daughter who had Turner Syndrome. This family I do not know, but I do know of them due to a friend. They sadly lost their daughter at 9 days old due to complications with her kidneys and lungs. This beautiful babe battled against the odds during pregnancy, as all Turner  Syndrome babies do, but sadly was too unwell. I've thought of them every day since, and its been a stark reminder to us of how truly blessed we are to have a healthy G with us. Several times this week I've just sat and watched her, amazed at her battle, the odds, and how much of a miracle she is.

Piling on the pounds

This week G was weighed, and thankfully at 13lb 14oz, she is still doing well. So well infact that she has made her way from the 2nd percentile to the 50th. So well infact that they are now keeping an eye on her weight due to the rapid increase. So we've gone from having a tiny baby, to one that's packing the pounds too quickly.... Hmm. Given that she is feeding roughly 10oz less than other babies of her weight and age, we are slightly baffled! We will see how things are at her next weigh-in in 4 weeks time. 

Kidneys in the clear

Two weeks ago we took G for a repeat kidney scan. Given that we initially didn't realise she had a minor kidney issue when she was born, I was a tad apprehensive about the scan (Tim was taking it in his stride!). Upon arrival I asked what Gs previous issue was, and apparently the tubes from her kidneys to her bladder were slightly too wide. Thankfully the repeat scan showed that this was no longer an issue. Phew.

Cot catastrophe!

G has finally outgrown her Moses basket, so on Friday we decided to make the break and put G in her cot. She has been in her own room for about a month now, and her basket has been perched inside the cot, so we presumed that the final transition would be easy. How wrong we were! Three hours sleep. G decided that her new found space would be best used for rollover practice. As she can't roll properly yet, she spent the entire night getting very frustrated and not to mention ridiculously over tired.

Last night both of us felt pretty rough and couldn't handle another sleepless night, so G slept in her basket. Peacefully. All night. 

G 1- Cot 0

Medicine nightmare 

G is still trying every trick in the book to refuse her reflux medicine, and it's working. Her dosage has been halved due to then increasing the strength, but it's made no difference. As a last attempt I'm going to hide it inside some pear purée, but she's pretty clever and instantly recognises every other disguise we've tried. We'll see how pear goes down...

We have a relatively quiet week ahead, though I'm excited about taking G to school to watch my old class's assembly. That aside we'll probably be doing our best to avoid the heat, poor baby is not a lover of it, what baby is!