Making the boots and bars ‘normal’

As ‘Happy Feet’ babies grow up, they only need to wear their boots and bars at night.. and this is usually until around the age of 5.

At the beginning of the treatment, this sounds such a daunting prospect.. 5!!!! – that seems so long away.

To help Jessica (and ourselves) we made the boots and bar part of the bedtime routine.. so in our house we did tea time, play time, bath, pj’s, bottle/milk, boots on and then a story (with cuddles) and bed time..

Compared to some other babies I know, Jessica seemed to get into a great routine and for this I blame her boots and bars! see (another positive there 🙂 )

Jessica had never known any different so to her, wearing her magic boots at night was normal.. it was her life and because we tried so hard to keep her routine consistent, she expected to have them strapped on and almost never complained or kicked up a fuss..

In fact, the older she got I remember occasions when she would go and get her boots when she was tired to say “mummy, please put me to bed – I’m shattered”.

I will say that we kept her in a cot bed with the cot sides up for much longer than we would have probably without the boots and bars, because we were scared of her falling off her bed and hurting her knees and joints with her feet attached to each other, but this was no big deal.. When we finally did remove the cot sides, we just made sure we kept the stair gate up so that if she did get near the stairs, she wouldn’t tumble if she tried to get down forgetting she had her boots and bar on..

The state of those cot sides were hilarious! the banging and crashing that they had endured from the nuts and metal on the base of the boots and bar made them look like there had been a caged animal gnawing its way out.. ha ha

The strangest part about Jessica finally having the cot sides removed (later than most of her friends), was the fact she mastered how to get into our room.. in the mornings.. one of the most precious memories I have is of Jessica caterpillar crawling across the landing into our room and kneeling up with her hands in the air saying “mummy, I can’t walk can I ?” laughing her head off and pointing to her boots.. she took all of this in her stride and for that I admire her so much. 🙂

As I keep saying, we are very lucky in that we have wonderful close friends… who also have children… two of those children were to be Jessica’s first ‘sleep over’ memory..

I remember having all three girls to get ready for bed and at the time Jessica would have been 3, with one of her friends 4 and the other  2 and a half.. all was as it would be with 3 girls 4 and under.. they giggled, played and ate treats.. When bedtime came, I was so proud of Jessica because I overheard her explaining to her friends that she had to wear magic boots to bed so her feet would be like theirs..

I will never forget overhearing these three beautiful girls talking (very maturely) so matter of fact about Jessica’s feet and her treatment.  Jessica was not phased by their questions and they were not phased that Jessica had to wear her boots.. they just ‘got on with it’.

These young ladies are and will always be in Jessica’s life as their parents are our son’s godparents and are also dear dear friends.. .but even so, I will never ever forget the image of the three little ladies, chatting (like little old ladies) about the differences in themselves.. and also more importantly, the acceptance.. because difference is amazing.

Some adults could learn a lots from children…

xxxx

Onto the Boots & Bars……….

Having a baby is all about milestones at times isn’t it..? First bath, first smile, first night of sleeping more than a couple of hours etc.. and for Happy Feet babies this is no different.. but we have extra ones… first cast, second cast….fifth cast…BOOTS and BARS!  If you thought that the casts were clever then you will also be impressed with this part of the treatment..

The babies wear ‘magic’ boots attached to a bar and these boots are set at a specific angle so to ensure the feet don’t relapse into the original talipes position..

I couldn’t wait for this stage with Jessica as it meant that she had a break from treatment for an hour a day.. For the first 12 weeks she had to wear these ‘ magic’ boots for 23 hrs a day.. and boy were we strict about the timing.. but it meant that for one very precious hour a day, we could have those amazing full cuddles and and lets not forget… We got to bath our girl –  most parents get to do this once they take their baby home, but we had waited 5 very long weeks..

I still remember Stewart and I getting so so giddy at the thought of bathing her.. I suppose the talipes treatment just ensured even more so that we never took anything for granted.. It made us realise just how precious those ‘firsts’ are.  Many people said to me that you ‘wish’ your first baby’s early years away as you are always willing on the next step.. This was something we could never be accused of..

Yes, I willed the weeks away so I was closer to her needing the boots and bar only at night, but no – I never wished her newborn time away, I wanted to cherish every second of her being still tiny for me to have those longed for cuddles with nothing in the way!

At first to be able to see Jessica’s feet each night and also stroke her legs and bath her was such a welcome change from the casts, I was back in my ‘zone’ and got my mojo back.. but again there came a few moments where this was also a bit tough at times..

I am proud that I took Jessica to baby massage.. the other mums there looked at Jessica in her boots and bars but I smiled as much as anyone can possibly smile without their cheeks bursting, always made sure me and my girl looked the part and prided myself that yes!, my baby is ‘different’ to yours, but she’s perfect too – just like your baby…

I remember even joking with one mummy that the bar really helped me to change nappies, as I never had to worry about wandering legs and feet ! – every cloud hey….

Like all long term treatment, seeing your little one with boots and a metal bar joining her feet together for 23 hours a day had it’s upsetting times.., I remember putting on the proud, brave face for the first 6 or so weeks and then my good friend seeing me arrive home one day.. she nipped across our driveways and asked how we were and I remember just bursting into tears!  I had no idea where this had come from but I think the sight of a friendly face just opened the floodgates.. but as I said earlier… my friends are amazing and never ever made a fuss about Jessica being different.. and this really helps 🙂 and one thing I have definitely learned from this is that it’s ok to admit when things get a bit too much – don’t be too proud x

There are moments when Jessica simply amazed us in her boots and bars.. she could look so comfortable in sleeping positions that most of us would think looked so bloomin awful.. she just got on with it.. I suppose she has never known sleep in any other way..

We were tough with Jessica… I was so adamant that when she was older I wanted her to have the option to wear all of the amazing and gorgeous shoes out there (yes I flippin love shoes), that I was driven with the attitude of

‘when she grows up one day and wants to wear the high heels and sparkly strappy shoes, I want to know that she can, because we followed every last part of all of the instructions given to us about her treatment.  I never want to have to say, no Jessica, you cant wear those type of shoes and that’s because I wanted you out of your boots longer so I could cuddle you easier, or you cried when we put the boots on so we removed them for a better nights sleep!’

What I will now be able to say is – ‘yes you cried and we were heartbroken at times to have to make you wear them – but look at you now.. you dance, swim, trampoline, jump, ride your bike and yes! I am almost certain – you will also one day be wearing high heels that are sparkly! – because we loved you enough to persevere! because this is about you – and not our need for sleep and cuddles xxx’

The boots and bar stage 23 hours a day once again left us in awe of our amazing girl… she was so strong and she almost never complained..

The day when we were told Jessica now only neede to wear these boots and her bar at night will remain one of the most happiest days of my life! – at 18 weeks old, we finally had our little girl to cuddle, roll around, play with without and metal or plaster to worry about or get in our way!

Boots and bars for 23 hrs per day! COMPLETE xxxx

The tough times during the casts …….

So, Jessica had done it.. we had got through the first hurdle.. Casts.. have to be honest that it did have its bad bits.. so here goes.. I’m viewing this blog post as therapy and I hope that you mummies and daddies out there with happy feet babies don’t feel upset when reading… but I did promise honesty..

To see a 6lb11oz baby in full leg casts is always going to be a shock to the system… to have this done on a hot summer day is also not helpful… at the time Jessica had her first casts put on I will admit that I was partly on another planet and for that I blame the shock that she had arrived 3 weeks early coupled with the shock that she actually arrived after a very long labour.  I was exhausted! so admittedly my memory of this first step in the process is a bit foggy.

I’ve already explained what happens when they put her in casts so I won’t go into that again.. what this post is about is what comes when you get home.. what I simply didn’t expect..

As I said before, Jessica was born in the summer.. when everyone is out and about and to me this was just the perfect time to have a baby.. to be able to make use of the pram and have lovely family walks.. the sad part is that I ended up almost dreading these walks.. not always but on my bad days (as every new mum has).

Maybe I was in a ‘zone’, maybe I was naive.. but what I never expected was the amount of interest me introducing my new baby girl to our village while she was wearing her leg casts would bring… now please don’t think that I am saying my village is full of rude people who stare… absolutely not! we are a strong family based community which results in most people knowing you some way or another and also people actually caring about each other… so this is hard to explain and get the point across correctly..because everyone (almost) meant well.

I was so very proud to be a mummy.. It was something I had always wanted to be so I had no hesitation in putting Jessica in a lovely summer dress and taking her out into our village for the annual ‘club day’.. Of course like most mummies, I wanted to show her off and enjoy being part of the mummy club… but my memories of this day aren’t all great.  Unfortunately I did not prepare for all of the questions… and there were loads..

If I had a pound for every time we were asked that day if Jessica had ‘clicky hip’ I swear we would have made a fortune.. the first people that asked what was wrong, were fine.. I was prepared (to a point) for questions.. but what I was so sad about was that the casts overshadowed us showing off our greatest ever achievement .. Our precious baby girl.. You see, people first saw Jessica, but then they noticed the casts… so rather than them coo and aaah as most of us do when introduced to a new baby, then give the mum and dad hugs, best wishes then maybe make jokes about “welcome to the sleepless night club” and so on.. – all positive things…we didn’t get that.. not that day.. we got oh no whats ‘wrong with her?’ ‘oh has she got clicky hip?, what are the casts for?, oh what a shame.. and for us then to continuously have to explain the course of treatment and what it entailed, that she had bilateral talipes, you know…. club feet….

I am not saying that these people didn’t mean well – of course they did.. they all looked genuinely concerned for both jessica and us.. because our village looks after its community.. but.. it still hurt…

I felt like I wanted to stand in the middle of the club day celebrations and scream….

“Hi, just so you all know… we had our baby early, so she is here to celebrate our first ‘club day’ as a family.. we are so so so HAPPY and she is everything we could have ever wished for! please come meet her and share our joy.. by the way.. she has two full leg casts on.. no – not for clicky hip – she has bilateral talipes..but don’t worry – we and her consultant have it all in hand so just come meet her and congratulate us she is PERFECT!!! ”

People sometimes say the right things.. but unfortunately it is very hard for faces to hide true feelings.. and i saw a lot of “oh poor emma and stew” faces that day.. and I have to admit.. it burst my bubble a little bit.. because I am far too proud at times.. and admitedly, even on hot days.. after that.. I covered her casts.. because quite frankly, then… i just didnt have the energy to keep on explaining..

so they were the well wishers..

there are of course, truly ignorant people out there who are just downright rude, thoughtless and should be taught manners!

this makes me laugh now as I am older, wiser and a much stronger person.. but one comment that I will never forget is that of a young woman walking past with her boyfriend.. We were  just getting back to our car after a lovely walk and for once, Jessica’s casts were on full display.. a young couple were approaching on the footpath as we were preparing to put jessica into her car seat.. they must have noticed her legs in plaster.. asthey passed I unfortunately heard the womans comment to her boyfriend..

“oh my  god! that woman must have dropped that poor baby.. it’s got two broken legs”

I wish I could write that I went over to her and told her how rude she was and that how dare she make such awful assumptions and then be rude enough to say them aloud in earshot of us.. but I didn’t.. I strapped Jessica into the car seat, hoped Stewart hadn’t heard too and  got into the car.. heartbroken.

I remember this being very early in Jessica’s life.. it must have been because my midwife was still visiting us at home.. when she next visited I told her.. and she was amazing.. she told me to stand proud and not let ignorance of others cloud this happy time for our family.. so I didn’t.. I later heard a young boy ask his mummy what was wrong with that baby’s legs.. she looked at me mortified but I didn’t blush and shy away.. I explained to him that she had magic feet that can actually change direction.and that the casts were to help them be like his feet… and he seemed happy with that and I left the shop smiling. 🙂

Children and motherhood is character building! FACT xxxx

Cuddles…

My biggest regret from when I had Jessica is that I didn’t cuddle and hold her for every minute of her first 24 hrs of life..

You see, I did what most new mums do …. the right thing..  I ‘shared’ her.. of course what I really mean is that I let her absolutely doting Grandparents, Great Nana, Uncles and Aunties cuddle her and hold her when the visited me in hospital.. of course if i did it all again I wouldn’t change any of this.. but I would change that when I had her all to myself for those few hours on the hospital ward, that I had held her and never put her down.. because that’s what you miss..you miss holding your ‘newborn’ without feeling the hard full leg casts banging together..

Jessica was around 24 hrs old when I met a lady that is still a big part of our lives now.. Jane.  Jane in my eyes is a miracle worker.. (she is Jessica and Max’s physio)  Jessica was put in full leg casts the morning after she was born..

This is the clever part…

The Ponseti method works because physios work closely with the staff in the plaster room and between them, they position and set the feet, each week in a new pair of casts to reposition the feet and manipulate them to be straight.. I am still in awe of Mr Ponseti for his amazing work which led to this method now ensuring that not all children born with Talipes will need surgery.. it’s AMAZING!  another point for you happy feet parents though – doesnt it feel strange to see such a small person have casts sorn off! I remember cringing that it may hurt her.. Jessica meanwhile was more often than not, flaked out on the hospital bed oblivious to all of the fuss – what a life hey?

Jessica’s feet were both turned inwards and upwards and to see her at birth, it was hard to imagine that she would ever walk, let alone dance.. but this amazing treatment works and she is living proof x

If I am honest, the cast part wasn’t so bad.. we didn’t know any different and neither did Jessica so we just ‘rocked on’ with it we were lucky in that Jane explained every thing she was doing .. .we did however long to bath our precious girl and were on a serious countdown to week 5 when this would be possible and the boots would be off!!! wooohooooo

So week 5 came and sure enough Jessica had her final casts removed and I have to say that I had a little weep to myself – first hurdle COMPLETE!! 🙂

xxx

When it all started….

When I met my hubby it was a standing joke (pardon the pun) that I wouldn’t marry him as he had scars on his feet and I ‘didn’t do feet’  I had been paranoid as a child of someone cutting my feet or stretching my tendons..funny how things turn out… years on we have two beautiful children and I am constantly aware of stretching tendons and feet operations!

I could not have been happier when I found I was expecting a baby.. I had all of the usual tests and scans and it was only when I received a call from my midwife about the results of my 16 week blood test that things didn’t look so positive.. she told me that the chance of our baby having spina bifida had come back as a borderline score.. of course she told us not to worry (which was an impossible request) and informed us that we would be scanned by a consultant to ensure thorough checks were done.. the scan was a week later..

That was the longest week of my life.. I read everything I could find about spina bifida as I had no idea what it was – during this reading, my hubby and I came across information on talipes… as he had had it when he was born we read further.. it mentioned that this could be hereditary so we decided to ask the consultant to look to see if our baby had it..

Thank goodness. the scan showed that our baby did not have spina bifida.. but it did show that our baby had a fine pair of ‘happy feet’.

This would be so worrying to some parents.. but we were so relieved that’s ‘all’ that it was, we were almost thrilled.. My hubby was living proof to me that my baby would still live a normal life.. he had ran for his county in 100 mtrs sprints and also played football semi pro so I had no worries  and maybe that’s why I never really allowed Jessica to feel anything but normal, because in our eyes she is…

The general RUDENESS!!! grr

so…my parents brought me up to have manners and generally to consider the feelings of others and the impact that my comments and actions can have on their day… it appears this was not taught to all!!!

I laugh remembering this now but at the time i was heartbroken.. I think i have ‘hardened’ over the years..

Lindsey (Best bud) and I had decided to leave our lovely cul-de-sac and venture to the glorious world of a soft furnishing shop (i can here the men groan at this point!)… anyway… this was at the point when Jessica was still having to wear her boots and bar for 23 hours a day so evidently she can’t have been more than 16 weeks old.. and i remember her being tiny at the time..

Lindsey was looking after me and taking charge so placed Jessica (in car seat) into the trolley so we could easily maneuver around the store…. to our amazement a member of staff lifted Jessica’s bar ,, with no care for what it was actually doing, and blurted! “eurgh!!! what’s that for?”  I was so stunned at her forward approach that I automatically started explaining the treatment Jessica was having… blah blah blah.. very much a scripted version that I had got used to saying.. while Lindsey stood there, quite frankly astonished at the lack of manners or compassion by the woman in question.. – the great thing for me is….. i have great friends who never made me feel like my baby was ‘special’ or different.. each and every one of them have treated me as a mother just the same as them and my children the same as their children.. but the special ones out there know who they are and they know the tears that there have been and the tough times that we have had.. my children will walk and dance one day..and they will also have manners! and respect for difference in people  xxxx

why this is important…

I ‘ranted’ to myself via laptop the other week… I had text a couple of friends to say i felt strange about Max’s physio appointment.. so today at work I decided to re-read that rant.. and it made me realise that there must be other parents out there that feel the same, but maybe they dont want to say it out loud either.. so I’m still not saying out loud.. but here is how I felt that day.. and also why this is so important to me.. .

this was the rant.. i didn’t even finish it.. but it made me realise that we all need people who ‘get it’  so i hope you that have Happy Feet babies, do  xx

So today my 18 month old son has an appointment with his physio… this is to treat his Talipes which affects his left foot…

What’s that?  is the question most people ask.. Club foot is the more commonly used term!

So he’s smiley, happy and generally as much of a character as I could have ever dreamed him being.. but today I feel tense… I don’t always when we have a visit to the hospital but today I do..I think I know why… it’s because secretly I’m scared… there! I said it (well typed it!) 😉

I have two beautiful kids.. Jessica and Max.  Jessica is 7 and Max is just 18 months… both of my babies were born with Talipes.  Jessica has it bilaterally and Max just has it affecting his left foot..

It’s FINE! – that’s what you tell people.. you are the driving force for ensuring that your children and all who meet them are not of the mind set that your kids are anything but ‘normal’ whatever that is?  You do your best to make sure that they don’t feel different to their friends at nursery and school.. not to mention ballet classes and swimming lessons.. You are their mummy and that’s your job – to make sure your kids are happy

The hardest part is sharing my worries..because it’s really hard to explain what they are.. 

So back to today.. You’d think I’d be used to it.. it’s hardly difficult.  I take Max to see his wonderful physio, we have a chat.. he comically takes his socks off as soon as he see’s her and has the cutest smile and cheeky face as he does it.. his eyes say ” I know what you’re going to do – here you go – look at my cool feet”,  the physio will have a look, bend him and stretch him to the point I am cringing, yet he is giggling so I know he’s not uncomfortable.. but I am nervous… that she’ll tell me he’s going to struggle walking.. that beyond his ‘magic boots’ that he now only has to endure through night after 23 hrs a day for 12 weeks,  there will be something else that he has to go through, and for that reason I feel guilty..

I am all to aware that I am so so lucky to have two healthy and happy children who are so kind, caring and loveable.  They are healthy! They can see the smiles and caring eyes of the numerous family members and friends who love them dearly.  They can hear our lullabies and bedtime stories, our words of comfort and cheers of support.. they are growing and developing as they should in each and every way reagardless of the talipes.. so you see.. I feel guilty that when there are so many other parents out there scared sick that their poorly child will make it through another night or helpless that their child will never see their face through their blind eyes or hear the words of love through their deaf ears.. but however guilty i feel I still worry for my children, I want like any parent, for them to have as little pain and discomfort as possible while they go through their lives..

so it begins….finally

Hi,

I am a mummy to two gorgeous children.. who happened to be born with talipes (club feet).. my eldest, Jessica (7yrs) has bilateral and Max (18 mths) has unilateral..oh forgot to mention  him indoors was also born with unilateral talipes..

hopefully my blog will help other parents and children by raising awareness and also letting them know that they are not alone! Happy feet are everywhere and in my eyes… are remarkable… so here it is.. my new blog.. I hope it helps.. I cannot promise to make you laugh, smile or indeed cry.. but what I do promise is my honesty  and a true recollection of my experience through two lots of treatment ..

I hope this helps you

Emma xxxx