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! 

Naps, dream feeds and Tim's first Fathers Day!

16 weeks since our little monkey arrived and I finally feel like things are starting to settle down. I no longer feel like a rabbit caught in headlights, but instead I feel we are getting into a routine and that things are starting to improve....

Naps

When do these super mums do their housework, washing, ironing, and generally catch a break? During nap time.... Oh, well they really must be super mums then as G only naps for 20 minutes! 

I'd started to think that part of Gs grumpiness could be down to lack of sleep during the day. We had no pattern as such, she just fell asleep whenever. It was time to start looking for her sleep cues, and enforcing a napping schedule (I use the term schedule loosely!).

Initially it felt like a losing battle, nap times were still no longer than 20 minutes, and she fought going to sleep. However, a week on, I've learnt she needs 3 naps per day, usually around 8am, midday and mid afternoon, and she's starting to nap for around 45mins-1 hour. When she's awake she's also a lot happier. So has Tim come home to a cleaner house with piles of freshly ironed washing? Hmmmm, not yet! 

Dream feeds

14 weeks in and I was shattered. I couldn't take the night feeds any more. I was miserable, and had no energy. So we decided to think about dream feeds.  G was feeding at 6pm, and due to her weight and relatively small feed amounts, wasn't making it much beyond 2/3am. Dream feeds involve feeding baby whilst asleep, at around 10/11pm, and aim to get them through until morning. The first few nights G was still waking around 3am, but we figured it was her body clock as opposed to hunger. So we persevered. The wake up times gradually moved to 4am, and more recently, 5am. Luckily when she now wakes around 5-5:30am she is happy to babble away to herself until I feed her at 6am. Last night was the first time in ages that I had a solid six hour sleep. I feel....rough, haha, I guess I need to adjust too.

Father's Day and family fun 

We had a busy weekend what with my nans 90th birthday party on Saturday, and Father's Day on Sunday.

Saturdays antics involved a 300 mile round trip Sussex, and catch ups and G cuddles with family that we hadn't seen in years. G behaved very well, was happy to be passed around, and was an angel for the 7 hours or so that we spent in the car. She did projectile vomit on me on the way to the party, and whilst she had two spare outfits, I had none, but luckily Chanel perfume did a good cover up job! We had debated whether to go on Saturday due to the long journey and taking G into a care home (germs and what not), but I'm sooo glad we did. Not only did she meet both of her great grandmas on my side, but I saw aunts uncles and cousins that I hadn't seen in far too long. We must meet more often!

On Sunday we went for breakfast with Grandad,  and then a BBQ with Grampa. Tim very much enjoyed his day, and loved Gs gifts of: a man tin for nuts bolts screws and general crap; an 'I love daddy' mug; his favourite choccies and a personalised mouse mat with Gs gorgeous pics on. What a clever girl she is :)

Dietician

Yesterday I went to see Gs dietician. It wasn't  the most informative  of appointments, however we have concluded that G definitely has a full on cows milk intolerance (not just lactose), and should not have anything containing milk until we meet again when she is 1. With this in mind, I was given information regarding weaning, things to avoid, and a recipe book for meals that can be made using her formula. I won't be tasting those! 

Formula and meds

"When did you last hear Gracie strain and grunt all night long?"

"Well, I can't remember actually."

"Ok, well when did she last scream all evening?"

"Errrrrr..... A few weeks ago?"

We hadn't realised it, but Gracie's formula has actually been making a huge difference. She's been in it now for nearly a month, but over the last week things have really improved and her tummy is a lot more settled. Even the reflux is starting to get better. Speaking of reflux, I have just picked up a new medicine to trial (omeprezole). Hopefully it may banish, or at least control her reflux for the foreseeable future. 

What's next for Gracie?

Next Thursday we have a double whammy-Gracie has a kidney scan, and her jabs. We didn't realise it, but at her last kidney scan, it was picked up that her kidneys were slightly dilated. I don't think that it's a problem as it wasn't even mentioned to us, but the paediatrician just wants a repeat scan to see how things are.

As for the jabs, we all know they cause days of upset, but are for the best in the long run. Lets hope it doesn't knock her new nap schedule or improved evenings.

So, a very positive blog entry! I know that things won't always run smoothly, but we've had a pretty good few weeks. We've only had 2 or 3 car rides in the past two weeks, and generally she is falling asleep by 8pm. I even did the ironing the other night, that's a first!!

On a different note, a lovely friend of mine is taking part in an open water swim this weekend in aid of Turner Syndrome and another charity. She will be swimming two miles, something I can't even comprehend. Good luck Lucy!!

No I don't cover her face during nap time, she does!