The full time boots weeks

We’re now on the countdown till the end of full time wear of the boots and bar.  Yippee!

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Looking back almost three months I just can’t believe how quickly it has passed, and how much Harvey has grown. It’s not been an easy three months (but then it never is with a baby!) but it’s also not been as bad as we had sometimes imagined. It’s unavoidable, you get on with it, you learn to live with it. Getting used to the boots and bar was strange at first, but now I’m imagining how strange it will be without them.

The boots are bar are the final stage of the Ponseti treatment and are used when the foot has been straightened but needs to remain in that position. As babies bones are developing at a rapid rate, they need holding in the corrected position. A lot like teeth, braces to straighten and removable retainers to maintain correction. So, for three months the boots and bar are worn full time, then go down to part time wear for night time and nap times until the child is around 5.

There are a few types of boots and bar. We have strappy boots, and a standard ponseti bar. The boots hold the foot in the corrected position and the bar goes between the boots to also hold the correct angle. This means the feet are effectively bound together, which Harvey found tough to start with. There is a newer bar, a Dobbs bar, which allows the feet to move independently which is an option if the standard bar is not tolerated, but it is too new for substantial evidence into it’s effectiveness.

Getting Harvey free from his cast was amazing. Although it had become normal, seeing my perfect newborn in an unnatural cast was sad, as much as you know it’s for the best.  Equally, there have been times over the past three months where I have cried for Harvey, got angry, frustrated, and the sense of unfairness has re-emerged. But, treatment is soon over, and the long term benefit more than outweighs the short term.

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The first few days where the hardest. The weight of the responsibility was immense. During the casting stage, us parents had very little responsibility for his treatment besides taking him to appointments and keeping a close eye on his toes for cast slippage or circulation issues. Now, the success of his treatment was entirely down to us. His later ability to walk on a straight foot was down to us. Preventing an early relapse was our responsibility (relapses are rare and are sometimes unavoidable despite treatment adherence). Taking care of a newborn for the first time is a massive responsibility, and, at times, the extra weight caught up with me. But the weight of responsibility felt much lighter, much sooner than expected. The nurses showed me twice how to put the boots on correctly and let me practice. I left feeling confident, but, as soon as it came to putting them back on for the first time at home I don’t think it would have mattered how many times they had shown me. I was so anxious to put them on right. I felt I needed to be proficient at putting them on straight away and got frustrated when it took a few attempts to get his foot positioned in them correctly. Such a difference from now when I could probably do it blindfolded, nearly! For a few weeks we were obsessed with Harvey’s heel. When the boots are first fitted the heel isn’t quite all the way down at the back of the boot. There is a little viewing circle in the boots to check and I was looking in it multiple times an hour, comparing it to photos posted on facebook groups and worrying the boots weren’t on right. For any new talipes mums- the heel does drop after a few weeks but our consultant said as long as you can see the heel in the hole, a little gap is fine.

The day Harvey got his boots was the hottest day of the year. The worst possible day. We got about 2 hours of broken sleep that night and ‘woke up’ worried that this would be the norm- it isn’t, it gets better. The next day was almost as hot and my graduation day.

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Poor Harvey was not happy. In fact this year’s long hot summer was very much not appreciated. Imagine spending all day in socks and boots when it’s too hot for clothes. That first night, facebook was full of parents on the talipes groups discussing leaving the boots off for just one night because of the heat. As it was Harvey’s first night this was not an option. We’re all so glad it’s much much cooler now. The one thing which helped a little was cutting the toes off of his socks to get a little air to them.

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Hot and bothered after the first night 😦

The first few days were tough. Harvey was inconsolable at times. It must have been so incredibly frustrating to not move his legs independently. Again, it got better quickly. The more we lifted and played with the bar the better it got. He now happily lies for ages with his legs right up in the air. An impressive feat when the boots and bar weigh 400grams- his tummy and leg muscles are now super strong! He loves nothing more than banging the bar down to make a loud crash. Fun for him, but painful if an arm or leg is caught in the danger zone! Yep, we’ve had a fair few bruises from Harvey’s feet!

He may be strong but he’s not as mobile as other babies his age. Before the boots he was happily rolling from tummy to back. Since boots, nothing. He’s shown no signs of rolling for three months. He can sit unaided with his boots on, without them, he’s like jelly on a plate on a trampoline. He has plenty of tummy time throughout the day but just shows no sign of mobility. This is really starting to frustrate him over the last few weeks. He’s 5 months and wants to get going. He’s super alert and everything captures his attention. This is quite demanding for us, and I’m always on the lookout for new ways to entertain. I’m sure pretty soon he’ll be off in the blink of an eye.

Boots and bar are tiring for him too. They are so heavy it must take such energy to lift them. This shows in him not being able to stay happily awake for very long. Even now he starts grizzling and rubbing his eyes after an hour of play. I’m militant about naps, making sure he gets enough sleep during the day to fully enjoy golden hour.

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During full time wear they are allowed an hour a day of freedom. Golden hour. The best hour of the day. He loves it. Mummy loves it. Daddy’s desperate to get home from work in time so he doesn’t miss it. As soon as the boots are off he grins, gurgles, kicks and squirms. Then plays with his toes in wonderment. He loves nothing better than us blowing on the soles of his feet. I love nothing better than kissing his perfect, (cheesy!), tiny little feet. We have bouncing, standing, dancing. His toes curl under all the new textures as he explores.

Then the boots have to go back on. At first he would scream. We tried to remember to shut our back doors before boots on in the summer, but apologies to our neighbours for the screams at the same time every day! As soon as the bar clicked back in place, I kissed Harvey, Daddy scooped him up for a reassuring cuddle and he was fine. I often retreated into the garden for a little sob, he will never see me sad about his feet. Fortunately this stage didn’t last for too long. Routine really helped, golden hour, boots on, feed,book, bed. We also found it was much easier to put his boots on whilst he sat in his bouncy chair, playing with a toy and Dad. At first we sat him on Dad’s lap but I think this may have made him feel constrained, perhaps reminding him of cast changes. We’ve been fortunate in that Harvey has not suffered from blisters or sores which a lot of babies do due to rubbing. We used socks with grips and granuflex (adhesive padding) at the back of the heel and under the middle strap. At the first sign of any redness we also used mepilex border lite (spongy plaster) under the granuflex. Although he has recently had very dry skin on the front of his foot which sometimes bled when we took socks and dressings off. I think just from daily baths and dressing changes when it was so hot. A tiny bit of sudocrem and bathing less often has really helped.

So, we’ve nearly survived full time boots. I was dreading this stage but it was not as hard as I imagined. Yes, you have to get used to slightly different ways of carrying and holding them. But there are advantages for parents- nappy changes are easy with no flailing legs! Also the bar is useful for carrying a muslin with baby at all times- handy with a sicky reflux baby like mine!

Of course it’s been tough on Harvey, he has coped amazingly and we are incredibly proud of him. Such a happy, bouncy fella who will never know just how much he amazes us.

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Here’s hoping part – time wear continues to be a road with few bumps.

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Farewell casts!

So tomorrow we’re saying goodbye to the casts after 11 weeks of serial casting ! Yay!

Harvey’s tenotomy went really well at the beginning of the month. He was a superstar. The hardest part was having to fast him from 3am till he was given a bottle in the recovery room at about 9am. They did the op under local but he was fasted just in case he had to have a general. Frustrating as we had to wake him for that 3am feed when he had been sleeping through the night for a couple of weeks already! (I am well aware how lucky we are and we both express how grateful we are every single night we get a decent sleep!). Once in hospital we took him down to theatre asleep and picked him up from the recovery room asleep. What went on in between I don’t want to know, but aparently he  charmed everyone. After the op we spent the day on the ward but our little superstar barely made a fuss and didn’t even need paracetamol. His foot was clearly uncomfortable and he made it known when we moved it. The next day he was a little unsettled but one dose of calpol was all that was needed. We were relieved. We had been dreading the tenotomy but really did not need to. Babies are so incredibly resilient,  it amazes me continually.

Three weeks later and Harvey is ready to come out of casts. We’ve been making the most of wearing trousers before he gets his boots n bars and making sure we have enough footless rompers with poppers down the legs to make nappy changes easier. And socks ready for wearing with the boots- anyone who knows me knows how unlike me it is to buy expensive socks, or pay £7 for a pack of gap or next socks. But suddenly the smallest garment is the most important- I really don’t want him getting sores or blisters so if grips, towelling material or double lined help, he’s having them! We are approaching sock conniseur status! His feet, even the unaffected one are tiny, 0-3month socks drown him so I keep buying more.

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What a beautiful shaped foot!

Harvey has also had lots of tummy time and I am incredibly proud that he learnt to roll from front to back at 11 weeks- talipes?what talipes! It doesn’t seem to be holding him back.

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So tomorrow we will whip the cast off at home. Harvey will have a lovely normal bath at home, bliss in the supposed heatwave due. Then some foot massage to get the blood flowing, before heading to hospital to get his sweet little boots fitted. I cannot wait to see his perfect little straight foot and tickle his tiny little toes. The first two stages of treatment are done and onto the next stage. We’re dreading boots and bars a little as he loves kicking his feet, so unsure how he’ll react to them effectively being bound together and the weight of the bar. But we’ll approach with positivity and relish singing two rounds of “This little piggy”…..!

It’s the little things…

The weeks are flying by! Everyone says time flies when you’ve got a little ‘ un but you don’t realise just how quickly until you have one!

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Tuesday afternoons have become my marker for the week, before I know it we’re back at children’s outpatients. A few weeks ago, when everything was a fatigued blur, I said to Tom that Harvey’s castings were the only way I could pinpoint what day of the week it was. And very soon we’ll have our Tuesday afternoons free again!

This is Harvey on week 7. The week we were in clinic with a ‘working’ (functional/normal) pair of feet between us. I was on crutches and reliant on Mum to bathe, carry and push him. Each of our consultants were interested in the other. My rheumotologist was interested in the talipes treatment and his orthopedic doc was interested in my arthritis. Great. Very much looking forward to when neither of us are interesting to anyone involved in healthcare!

We’re trying to help him strengthen his muscles lots prior to going into boots n bars, and he started really kicking his casted leg almost as much as the other, which was great to see as he had been a little reluctant to move it for a while. Also great to see are smiles!!!The best!

Week 8 was a good week. His foot looked straight for the first time and we were really chuffed with his progress which had been a little slow in recent weeks, especially as they took it slowly due to swollen toes. I was also walking around again, happy days! A while ago I never thought I’d be so emotional about feet!

Week 9 and we’re ready for the tenotomy!!! Woohoo! His foot is straight so it now needs the achillies tendon cut in order to allow the heel to drop down. So he’s back into a holding cast to keep the foot in the corrected position and then we’re into hospital Friday morning and first on the surgery list, so all being well home early afternoon. Fingers crossed! Harvey celebrated by really banging his foot down when kicking on the floor, think he enjoys the noise! Exciting times today too as Tom was able to come to the appointment so got to bath Harvey for the first time, such a simple joy which both of them fully enjoyed. No-one gives quite such a good cuddle and playtime as Daddy.

So stage 1 of treatment nearly done. Will be glad to not have the weekly hospital visits anymore. I’m back there again for a check up next month. The arthritis is much better than it was. The timing of it has been rotten and I’m still pissed off I’ve got it. The steroids are keeping the inflammation under control and the pain is mostly gone aside from stiffness in the ankle and morning pain in my hand. As there’s still stiffness I’ve got until my next appointment in a few weeks for the steroids to restore movement in my ankle fully else I have to decide which anti-rheumatic drugs to take to avoid long term damage. Not cool. Without wanting to moan, this arthritis was, for a couple of days, the most painful thing I’ve  felt, yep, surpassing labour! Although that’s probably due to not having gas and air at home! Not being able to get to Harvey’s crib at the end of the bed when he was crying, having to have someone pass my baby to me, not being able to hold him with my right hand, was pretty shit. But the feeling of carrying him downstairs again was amazing, it’s the little things we need to fully appreciate more often. Our Mums have been superb and we’re really lucky to have plenty of offers of help, I just need to learn to take those offers up more!

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The bear on his top has talipes too!

One season ticket for the hospital please

So, week 6 and Harvey’s foot is correcting nicely despite the small amount of manipulation done last week. This week’s cast certainly looks a lot straighter too. Yay!

Harvey’s big excitement this week was he got to have a bath! We’ve only been able to give him one proper bath before, other than top n tailing, when we had to remove a cast at home. The hospital are fab and let parents bathe babies there but he’s always been either incredibly grumpy or we’ve been late to the appt due to work commitments. So that bath was just wonderful! It was so hot too so must have been nice n cooling and he loved it! He was also incredibly chilled that evening for the first time on cast day. We got infant gaviscon for his reflux which seems (cross fingers) to be helping him. So proud of him. And…..We have smiles!!!! Not on demand yet though so no photo!

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So everything going well. Frustratingly there is a but. We’ve been kicked (should really use a different word considering this families current feet issues!) with bad luck again, I’ve developed reactive arthritis. Bugger.

This week we have been at hospital everyday bar one. We may as well send our wages directly to the hospital trust’s car park. I feel like i’ve spent more time on hospital beds and in waiting rooms than I have cuddling my little boy this week and have hated every minute of being apart from him. Thankfully my Mum has been brilliant and secretly enjoys all the nappy changes. Super secretly this is all just a ploy to avoid nappy duty until he stops exploding after every feed!….If only. I could have read several books if I’d been able to focus on myself and remember a kindle. So I’ve been people watching for hours on end…A pretty dull pastime when everyone around you is ill!

Basically my body has decided to attack itself. I had a tiny minor stomach bug at some point after giving birth. Didn’t think anything of it, can’t even remember when it was exactly. Then I felt totally drained. Normal with a newborn. Then I got conjunctivitis last week. Ok, that’s odd, but it’s hayfever season, suck it up. Then my hand hurt to grip anything. Annoying, but probably too much time typing on my phone whilst Harvey’s being held sleeping. Then my ankle starting twinging. Ok, must have twisted it and not noticed. Then it swelled, and swelled and swelled. Crap. Off to the walk in centre- sent straight to a+e with suspected DVT. Blood test clear, phew! Must just be injured. Xray clear. Then they thought it could be a blood infection but thankfully even with unsuccessful attempts at getting the fluid out the joint, that’s been ruled out. Thankfully, as a hospital stay and stopping feeding him my breastmilk would have devestated me.

So reactive arthritis it ended up as. Basically, my body responded to the stomach bug by attacking itself. Nice work bod! How it can perfectly navigate pregnancy and birth then mess up ‘normality’?! The hospital have been great. I’ve got steroids  (been assured they’re safe for the Harvster) and crutches. At the moment it’s mainly just the ankle, and praying it stays that way and the twinges elsewhere are my imagination. It’s incredibly stiff and painful, in the morning and late evening I literally cannot walk. I now know what our stairs and landing look like to a crawling infant! I’ve a mental list of what we need to move when Harvey’s mobile! Its not the end of the world, it gets better within 3 weeks to 6 months aparently, I better be nearer the former end of that scale! I think I’ve just come out in sympathy for Harvey. Serves me right for laughing at his elephant knees a few weeks ago- I’ve now got elephant foot!

 

World clubfoot day

Today, 3rd June is world clubfoot day. A day to spread awareness about clubfoot and it’s treatment.

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It is also Dr  Ponsetti’s birthday- the pioneer of this non-invasive treatment method. A man who many children, adults and parents would love to thank personally for allowing them to be fully mobile and avoid invasive corrective surgery.

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The amazing Dr Ponsetti

I am incredibly grateful for this method of treatment to prevent pain in my boy and allow him to walk and run just like anyone else. I am proud to be aware of talipes and an advocate of the ponsetti method. I am excited about the rest of his treatment and his perfect feet.

I am also grateful for our treatment team at then hospital and STEPS charity for their invaluble support shortly after the initial prenatal diagnosis. I hope to one day in the not too distant future raise money for this and other clubfoot charities who help children in developing countries access treatment, with my son running around alongside me.

5 weeks, 8 casts

Baby H was 5 weeks old this week so off we went to have his 5th cast on, plus one for last week’s re-casting.

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Baby H at 5 weeks rocking the collar up!

Everything had been going well, we were missing baths but enjoying wearing babygros with feet in while he still can. Once he goes into boots n bars he won’t be able to wear gros with feet. The cast is now normal- as its wrapping a nappy sack round his leg every nappy change to protect it from wee fountains and worse!

We approached this week with a little apprehension as he had had a little skin reaction to the cast last week which had rubbed a layer of skin off his ankle which was sore and bruised. He screamed the place down when we took it off and the air hit it- so much for enjoying a few minutes of freedom from the cast!

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Week 4 soreness
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Excuse the red face from tears!

Thankfully that was mostly healed this week but explained why he had been rather hard to soothe recently, poor lad. His foot was still fairly swollen, a kind of protest from everything moving. On went the next cast. Purple toes. 15 minute wait. Toes with poor capillary refill- not great. So off came the cast and it was done again. Same thing. 2 hours later, lots of crying and three casts later we were on our way home. Exhausted.

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Week 5 progress

The team were fantastic and as they said better he his comfortable than having to rush back. However, they weren’t able to manipulate the foot as much due to his toes so this means he will need more casts. So a slightly longer treatment time, but means he’ll be slightly bigger when he has his boots n bars which is not such a bad thing- i’m don’t feel he’s ready for coping with those just yet.

Guess he has sensitive toes, he also scrunches them up so tight bless him. It might not be helping that he’s a touch of reflux which upsets him. Lots of sitting him upright for a long time after feeds and helping him fall into a deep sleep- so lots of time to write these updates!

We saw a different consultant on week 5 who scored his foot a 4. We were a little disappointed with this as it was scored a 2.5 the week before. We had also thought thought the position wasn’t as good this week. They assured us this is probably just the way he was holding it and that the scoring is often subjective and varies between raters. This surprised me, and as such, I have decided to pay less attention to the numberical score and instead focus on the amount of movement and position of the foot.

 

 

Swollen toes

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Love these milestone vests

Casting went ok, went back, took it off, got a new one. There was some noticeable difference in his foot position and Doc reckoned it was down to a 5.5 after 1 week.

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End of week 1. Skinny elephant legs!
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Progress after 2 weeks – we must wear this vest a lot!
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Current size difference- the affected foot tends to be up to two sizes smaller but this may well resolve to a neglible difference

Our hospital uses a soft cast below the knee method of casting rather than the traditional plaster of Paris up to the thigh. There is some controversy surrounding this but there is published evidence of effectiveness and as a parent I much prefer this smaller, lighter cast for his comfort. It also means we can remove it ourselves quickly if needs be…

We have to keep his foot elevated which means holding it up when cuddling/feeding and trying to keep it propped up when sleeping. With a tiny wriggly baby this is not easy and we b came fairly inventive; blankets, muslins, soft toys, even kitchen roll! It took us weeks to realise the horse-shoe shaped tummy time support from his playmat was ideal.

Despite lots of elevation, one morning after his third cast he was incredibly irritable and hard to settle. When I came to do a nappy change his poor little toes were squashed together, overlapping and half purple, half white. So quick call to the hospital, unwrapped the cast and took him back in that afternoon to be re-casted.

It was starting to feel like our baby was spending far too much time in hospital, but the up-side to this re-casting was that we got to give him a bath! His first proper bath rather than top n tailing whilst holding his foot away from the water (we need to keep it dry). But boy did he need it! No-One mentioned to us just how much their little feet smell after being in a cast-super cheesy!