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Mumsnet: This Is My Child | Mr Eli has Talipes and Benign Paroxysmal Torticollis.

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I have been looking, with interest, at some of the posts that have been published during the This Is My Child awareness campaign via Mumsnet. We live our life day-to-day as normal. Because THIS is our ‘normal’. Eli is our first born and we know no different. But I suppose, our story is different. I’ve not really highlighted Eli’s Talipes or (recently diagnosed) Benign Paroxysmal Torticollis on my blog before. I have mentioned in a few posts about his Talipes. But nothing in depth. So here it goes!

Everything stems back to when I was pregnant. I had a very tough first few weeks, after a bleed we were told that the pregnancy might not be viable at a 5 week early-pregnancy scan and told to return in 3 weeks time; where we saw the most amazing and incredibly tiny flickering – a heartbeat! PHEW!

We so looked forward to that 12 week scan. The sonographer was lovely, but seemed concerned. Eli was jumping ALL OVER, I thought she was just having difficulty measuring up dates because he wouldn’t keep still. She then turned the machines off and said she was sorry to tell us that our bundle of joy had a “nuchal fold measurement on the cusp of high”. The exact measurement was 3.5 mm. This was indeed the cusp before they offer you further investigation. We needed to know. We were informed that a high NT measurement could mean a multitude of conditions, including Down Syndrome. This was heartbreaking. This baby was so wanted – we needed to know what we were facing. We had ‘counselling’ and I had bloods taken. The nurse then called University College Hospital London and told us they had a referral for the the very next day. We were told we could have a more in-depth scan at the Fetal Medicine Unit; where we would also be offered the option of CVS – which would indeed confirm any anomalies, through a horrendously invasive procedure. After the lengthy scan with several specialists, we were advised that we could either go ahead with CVS there and then, or wait… It had been picked up that there was a lack of nasal bone; another marker for Down Syndrome. Our world shattered. HOW WOULD WE COPE?! We went ahead with the CVS there and then. It was like a whirlwind.

The procedure was horrible. Just horrible. I had soreness and tenderness for a few days after. Not to mention the constant worry and stress of the risk of miscarriage. It was a very very hard time for both of us, waiting for the results. 3 weeks passed and we received a letter confirming that everything was spot on with Eli. He didn’t have any of the common anomalies that CVS tests for.  We were over the moon to say the very least. PHEW!

But this was not the end of our hospital visits. To cut the (very!) long story short – we had a total of 9 scans. Because of the NT measurement, Eli’s heart, organs and growth was routinely monitored. He developed fantastically. At the 25 week scan, it was found our baby had a degree of Bilateral Talipes.  But it was “extremely mild”. PHEW! It was corrective. We were happy. In the grand scheme of things.

Fast forward to almost 42 weeks pregnant, I was just a HUGE pregnant ball; unable to move, pretty much. That little boy was so so squashed up inside my petite 5 ft nothing 1″ frame. I was eventually induced. Which, shock horror was just the WORST thing ever. (Incidentally, I would never recommend an induction. Just bloody wait till the baby wants to arrive!). After 30 hours of labour, Eli was pulled out of me in an emergency situation using Ventouse. He was out, safe, at long last. PHEW.

Or so we thought.

We both immediately looked at his feets. Yes, they turned in, but probably weren’t half as badly affected as we were imagining.

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Again, fast forward to 8 weeks old. We’d not been seen by a specialist. Not even had a referral. At Eli’s 8 week check the GP who was head of the surgery, told me that his feet would ‘correct themselves when he learns to walk’. I wasn’t happy with that. We’d been massaging, manipulating and exercising Eli’s feets since birth, but at about 8-10 weeks had hit that brick wall. They weren’t getting any better. With the encouragement from @BexandMic on Twitter, who’s beautiful son Hugo was also born with Talipes, I kicked off at the Health Visitor. I got a referral to see a Physio about his feet. At the very first appointment our lovely Physio, Jenny, pointed out that Eli’s head was tilted to the left. I couldn’t understand what she was referring to, he just couldn’t hold his head up yet… She explained it looked like he had something called Torticollis. Possibly from being so squashed up during pregnancy, possibly from the trauma of being pulled out so quickly. I was given exercises to do with his neck regularly, after a week, his head was straight! I still to this day can’t believe we didn’t notice it. Looking back at photos, his neck is completely to his shoulder on every single one. There was still tightness after a few sessions with the Physio and more manipulation on our part. We eventually saw our consultant, Mr Tuite at Broomfield Hospital on 31st October. Eli was almost 14 weeks old. Worryingly, most children with Talipes begin their treatment shortly after birth.

We were devastated when Mr Tuite said that Eli would in fact require plaster casts to begin the correction process. Mr Eli was pretty mobile at 14 weeks old! He was used to his bedtime routine and his bath. We knew the casts were for the best though. We had to do it. We were told Eli had really mild Talipes, again, so would require 2 weeks worth of casts…

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6 weeks later Eli was still in casts. It was incredibly tough.

Being the age Eli was, we got a lot of stares. You could just tell people must have thought he’d been dropped and had broken legs. When people asked what had happened, they didn’t understand. They made me feel like the story I was telling was a pack of lies. It was just a horrendous feeling. We did however have luck on our side, in the fact that it was Winter when Eli was in casts. It wasn’t hot, he would have been so much more uncomfortable if it was! He spent a lot of time in long socks and snow suits! In hindsight, I wish I’d been more confident with his casts. Embraced them more. Decorated them, even. The casts did not hinder Eli in any way, he was rolling over in them and they were SO heavy and awkward. He kicked his legs up and down and bashed the casts to bits! He was so brave – he didn’t sleep at night, but hey, he doesn’t now either!

The Torticollis would occur when Eli seemed to meet new milestones. It wasn’t constant. It was irregular. His neck tilted for around a week when he started rolling, sitting up and crawling. But also seemed to coincide with teething too. We continued to repeat the exercises and manipulations.

Mid-December 2012 and Eli went into Ponseti Boots and Bars 23 hours a day. He got an hour “free” where we gave him his bath and he had a kick about afterwards. This was a huge relief. We could get back to normality somewhat. We hadn’t even thought about the visual  impact the Boots and Bar contraption would have on other people. After our journey, we had just accepted what we had to go through.

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In the coming weeks, I had an array of comments and conversations about his B & B’s.

“They’re funky boots” “Thanks! They’re to straighten his feet” “ohh… I thought they were just fashion accessories! I’m so sorry. Didn’t realise your son was ill”. “He’s not ill?”

“Does he have broken legs?”

“Does he have broken hips?”

“Is that a contraption to stop him wriggling away from you?”

“Do they make him taller?” “WHAT?!”

 Etc. Etc. Etc.

We had a lot of nasty glances. A lot of nasty sniggers. I’m REALLY not thick-skinned at all. Like I say, I’d completely accepted that this was his treatment. It did not bother me. This was normal to us now – this was part of our every day lives! Until someone pointed his feet out, or made that eye contact, that’s when I’d think. Then it would upset me. But, I needed to get through that for him. It was in his very best interests. He wouldn’t be able to walk without it! Had we just been too blasé about the entire thing?!

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Eli wore his B & B’s for 23 hours a day, for 6 months. Most children wear them for 23 hours a day for just 3 months, then hours are dropped throughout the day until they eventually just wear them at night time. To our surprise, Eli went straight down to just nights at our next review. This was just insanely cool. It was just magical seeing him so free. His feet look PERFECT! We’re so so pleased. We’re also convinced though, that Eli struggles at night time because of his boots and bar. He’s free all day long, then come bedtime he’s confined. He can’t move with ease. It’s uncomfortable and heavy. He will sleep for 2-4 hours at a time. Then I will need to settle him. There has been nights where I have taken his bar or both his boots and bar off, and he’s slept soundly. I’m sacrificing my sleep so he can walk. Easy decision. I do worry it’s not good for him, the broken sleep. But what can I do?!

At 10 months, he started pulling himself up and cruising around his play pen. I can’t tell you how proud we both were. It was just so special; still is! SUPER PROUD PARENTS!

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Not long after Eli started standing up, there was an afternoon where Eli was particularly miserable. Anyone who knows Eli knows he is a jolly boy. Barely cries. He’s only ever grumpy in the night! He was super grizzly. I put it down to teething. Then he projectile vomited. His neck was tilted. He went floppy in my arms, the colour drained from usual his rosy cheeks, his eyes rolled back and he seemed to pass out. I was beside myself. Naturally. I rang my OH who calmed me down. I’ve never been so frightened, it was seriously scary. This had happened previously, but I wasn’t there. Another bout of sickness and drowsiness and I let Eli sleep. We then recalled another time when he projectile vomited (he was never a sicky baby so could recall these occasions clearly). Within in a few hours, his neck was back to its mid-line straight position. Without any manipulation. We worked out that they all coincided with his neck tilting. Could the Torticollis be causing this?

I took Eli to the doctors – who were, USELESS. He googled Torticollis and told me what Wikipedia says… He said he’d seen just one other case of this and to go back to the Physio if I was concerned. Hell yeah I was concerned. We didn’t know if it was underlining with something else. I went to Portugal for 4 days. Eli had another bout of the sickness and drowsiness with the Torticollis. Again, his neck had straightened up itself by the next morning. It was all definitely linked.

I went to the Physio again after my trip. She was lovely, she explained that the condition was Benign Paroxysmal Torticollis. This variation of Torticollis comes in waves, or ‘attacks’. The attacks can last anywhere from minutes, to hours, to days and is accompanied by vomiting, pallorataxia, agitation, infantile migraine, unsteadiness of gait upon learning to walk, general malaise and nystagmus. All sounded about right. The periods in which the child’s head is tilted and other symptoms appear can last anywhere from a few minutes to a few days, with a frequency of anywhere from two per year to two per month. Looking back at the frequency of the attacks, we’ve found they seem to happen at the beginning of the month – every month, so far. It seems to surround teething, more than milestones now.

So now we know.

But what to do about it. Well, we’ve been told my several doctors and the physio (as well as Google) that Benign Paroxysmal Torticollis is something that Eli will grow out of, probably by school age.

His most recent attack was on 6th August, his 1st birthday. His neck didn’t straighten up quickly this time though, it’s taken a good 10 days this time.

The additional care that Eli requires surrounds his Talipes and his Benign Paroxysmal Torticollis. We don’t know when he’ll be out of his boots and bar, could be at his next appointment (28th August), could be when he’s 3 or 4 or 5. We also worry about relapse; there’s also cases where the feet have been over-corrected so they point outwards. We also do not know when he will have another attack of Benign Paroxysmal Torticollis, or the severity. I have to carry dozens of muslins with me, just incase he projectile vomits. I often worry it’s just going to come out of nowhere. I also worry about when he goes to nursery – are there people who are going to be able to look after him if he has an attack? Luckily, at the minute, I can work from home. But he will need to go into nursery sooner rather than later, for him to be able to socialise with children his age, more than anything else.

We currently do not receive any help, support or funding. I do know of people who have been granted Disability Living Allowance for their children with Talipes.

I’d absolutely LOVE to hear from others who have experiences with Talipes or Benign Paroxysmal Torticollis. The latter being quite rare, so not heard or seen anyone else who has had a child with BPT.

Would we have had it any other way? Ideally, I’d love to have Eli without all the discomfort and challenges he’s faced – of course I would. But my goodness me, he’s a brave boy. He’s SUCH a character. And frankly, it’s made me and my OH better people. We’re stronger. We understand.

Worry, worry worry – isn’t that what all parents do?

MM.

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Brands: Summer savings at Kiddicare.com!

 

Ooooh, look what I just spied! Save yourself up to 15% off purchases at www.Kiddicare.com! Perfect timing for other prospective parents-to-be… and it’s the Summer holidays for those already (lucky!) parents!

You just need to enter the below codes, respectively.

• Save an extra 10% off when you spend £75 at www.Kiddicare.com or in store: ‘summer10’

• Save an extra 15% off when you spend £150 at www.Kiddicare.com or in store:  ‘summer15’

Enjoy! And tell me what you purchase!

MM.

 

Terms and conditions: 
10% off is only available on purchases of £75 (excluding delivery) or more online at www.Kiddicare.com. 15% off is only available on purchases of £150 (excluding delivery) online at www.Kiddicare.com or in store (Peterborough, Hampton). The discount codes must be entered to receive the discount. Discounts cannot be applied retrospectively. The voucher is not transferable. Offer ends at 11am on Tuesday 31st July 2012. Kiddicare have the right to amend or withdraw the promotion at any time.

Don’t forget the Kiddicare Big summer Sale is still on and New Lines have been added.

 

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Surprises from my best friends!

Table at Babylon restaurant, Kensington Roof Gardens.

On Saturday of last week (9th June), I was whisked off to Kensington for lunch with my best friends at Babylon, Kensington Roof Gardens. The restaurant and garden’s were absolutely amazing… there were real-life flamingo’s in the gardens! On the ROOF, in Kensington! Crazy!

When I arrived at the restaurant I called my friends and they came and met me at the reception and lead me to our table. They’d decked the table out with ‘Baby Shower’ banners and presents! What a lovely surprise!

I thought I’d share the lovely gifts that they got us 😀

Scrummy cupcakes from Whole Foods.
Scrummy cupcakes from Whole Foods.

 

We're massive fans of "The Very Hungry Caterpillar", so this amazing box has taken pride of place in the nursery!

 

Lots of presents! Lots of essentials 🙂

 

Beautiful gifts from The Little White Company.

 

Absolutely adore this super-soft bunny rabbit and elephant rattle from The Little White Company!

MM.

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Warning: May induce hysterical tears. (Or maybe that’s just me then!)

While watching the Britain’s Got Talent – Final last night an advert came on that reduced me to hysterical “I can’t breathe” tears. I got emotional at adverts before my pregnancy, but now it’s an absolute extreme set of events. Horrendous. Not only did I sob my heart out at the entire advert, not even knowing what the advert was even advertising, it got to the end and I couldn’t breathe when I found out it was for Volkswagen Polo. OUR CAR! Cue more intense hysterical sobbing.

The advert is tells the story of a very protective Dad, through the years of his lovely daughter growing up. Then handing out a brand spanking new Volkswagen Polo to her as she drives off to university… more crying ensues (on my part).

If you think you’re tough enough to watch this advert, click the play button below! Don’t say I didn’t warn you…

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Boys Clothing: Topshop Mini ‘Dino’ Jumper.


Topshop Mini ‘Dino’ Sweater, £15.00. Click here to purchase.
OH and I absolutely love the idea of our baby boy in Space and Dinosaur printed clothing… and just spotted this on the Topshop website. It’s absolutely lovely! ‘Twill be perfect with the new Converse we have for him!

Unfortunately, Topshop do not stock Mini at many stores anymore so this is going to have to be an online purchase. Topshop also charge for their shipping, which is £4 (!!). It’s a tiny jumper! Does anyone have a promotional code for money off/free shipping so that I can justify this purchase please?

MM.

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Book worm: Which books do you recommend?

Both OH and I are avid readers and we want to start building up our library for the little one now. We’d like to actually start reading to the massive baby boy bump too – so wanted to get books that are suitable from Newborn upwards… thing is, there are SO MANY books out there, we just don’t know where to start! We can remember a few popular books from when we were kids (The Hungry Caterpillar, The Jolly Postman, that kind of thing…) but books do you recommend? Which books did you buy for Newborn and older? Which books did you ‘swear’ by?

Would love to hear your recommendations! We’re really excited to get buying!

MM.

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Help needed! Songs, nursery rhymes and lullaby’s.

After coming to the conclusion that *most* nursery rhymes are actually pretty frightening (Humpty Dumpty dies… Jack, from Jack and Jill, smashes his head open and ring-a-ring-‘o roses is about the plague for crying out loud!), I turned to my iPod for exciting sounds for baby boy bump to listen to.

He favoured The Beatles, Enya and Fleetwood Mac. But that’s about it.

I’d like to actually sing mumble through some ‘classics’… What songs or nursery rhymes or lullaby’s did you yakkety yak sing to your bump and then continue to murmur sing when your buddle of joy was born? What songs did your bump respond to most?

Would love your thoughts on this one!

MM.

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Our iCandy Strawberry: Seat unit/Stroller and Carrycot.

**Quick warning, this post is quite photograph heavy**

We had looked at lots and lots and lots of reviews of travel systems, push chairs, strollers, joggers, car seats – everything! We came to the conclusion that we *needed* the iCandy Apple. No, not because we’re massive Apple fans… but because iCandy products are the most innovative, easy-on-the-eye and well received. Also, it’s quite important to us that iCandy is a British brand – we’re massive supporters of all things heritage, so this was also a key selling point for us!

Upon further investigation, we found that the iCandy Strawberry was due to be released – after much anticipation. We watched a ton of videos from trade fairs and Which, along with reviews, and decided that we now *needed* the iCandy Strawberry. We called up John Lewis dozens of times awaiting the delivery of it to the shop floor so we could look at it in real life. FINALLY, it had arrived at the Oxford Street store, so we dashed down after work to have a butchers.

We were not disappointed – but knew there was a waiting list and all products that were being delivered, were going straight to customers who had pre-ordered, months and months and months previous.

We looked at a handful of forums and spoke to iCandy stockists and found that we were likely to have a 3 month wait. So we thought, ‘sod it, let’s get it ordered’. So at just 12 weeks pregnant, we ordered the entire package from John Lewis in Stratford. We just wanted to keep it simple colour-wise, black goes with everything – and is unisex. So we ordered the seat unit (£450) and seat unit flavour pack in Assam (£75) along with carry cot (£95) and carry cot flavour pack in Assam (£75).

We were told that we’d get a phone call when everything was in stock, ready for dispatch. Personally, I thought it would be longer than the 3 month wait… judging by conversations around the amount of pre-orders and the length of time it takes to dispatch to the stockist – for the stockist to then dispatch to the customer directly. Just 3 weeks later we got a phone call saying that all items would be delivered in a further 3 days time! We couldn’t believe it.

But hey, I did say we were organised, didn’t I? 😉

So, obviously, at just 24+1 weeks pregnant, we haven’t given it a proper test drive yet. But check out the pictures. We’re chuffed with it! Will have to follow up on this post when Baby Boy actually arrives! From driving it around the house, I can confirm that it is smooth, easy to manoeuvre and quite light. The iCandy Strawberry comes with ‘memory’, meaning that it can be folded with the seat unit attached still – it will then unfold back into the same position before it was folded.

What’s in the box? iCandy Strawberry Chassis, Stroller seat unit, bumper bar, wheels, rain cover and instructions/warranty.

What’s in the box? iCandy carrycot, bumper bar, rain cover, instructions/warranty.

Carry cot attached, with bumper bar. The carry cot features the Assam flavour pack – hood and cover.

Stroller, rear facing. The stroller features the Assam flavour pack – hood and seat cover.

Stroller, front facing.

Folded, free standing, with stroller still attached.

Folded, laid flat with stroller still attached.

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We’ve also ordered the Maxi Cosi Cabriofix car seat from Amazon, which attaches to the iCandy Strawberry chassis. You need to purchase the Maxi Cosi Cabriofix adapters (£30) however!

The complete iCandy Strawberry Travel System that we purchased above came to a total of £725 from John Lewis. We still need to purchase a the Parasol (£25), which can now be purchased online at JohnLewis.com

MM.

 

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Today I’m making…

…Curtains! These are for our nursery.

What do you think of the IKEA bunting print that we’ve chosen?

 

MM.

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Welcome to the world: Blue Ivy Carter.

So today the world woke up to the news that the very lovely Beyonce and husband, Jay-Z had given birth to a healthy baby daughter – of which they had named ‘Ivy Blue Carter’.

Since the initial reports, I’m seeing articles across Twitter saying that their new born is infact named Blue Ivy Carter.

I think I prefer it the other way around. What do you guys think?

Obviously, cannot wait to see the first pictures of what will only be an incredibly beautiful baby!

MM.