On with the splint

It was a big day for Starbaby on Wednesday. We drove 2 hours to hospital for a foot check up with his amazing consuiltant and to collect his AFO splint to use in the day when he goes down to part time BnBs. We were geared up for 3 more weeks full time but his consultant is so happy with how well his little foot is doing, and how keen he is to be on his feet, that she decided it was best for him to go into his day splint today!

His foot is not a 'normal talipes' foot so she said from the first time we saw her that, combining that with the fact he is a bit older than most babies being treated (and so able to put weight on his foot more), he might need a slightly 'tweaked' approach.

 The splint already bringing its own challenges (hot sweaty foot and finding baby sized over knee length socks) but... he gets to move his feet independently in the day! I can sling him properly! Happy day. Also very happy that the little flexible 'gripper soles' shoes (starry, of course) that I bought him 2 months ago in readiness for this moment, fit perfectly on both his splinted foot and other foot.

We've looked forward to this moment for a long time but has no idea it was coming this week. I'm finding it a little hard to adjust to almost the whole of his lower leg and foot being encased in hard plastic... and knowing that this is going to be the way it is for at least 5 more years, possibly forever. It feels so unnatural to touch his foot and feel it so hard. But I know I'll get used to it in time.

Thankfully Starbaby seems fine in it, although we're having to give him breaks a few times a day for a change of socks and to dry the moisture that collects at the back of the splint. I'm hoping we might be able to arrange for some air holes to be made, or else I don't know how we're going to cope once the weather is warmer. He has very sensitive skin so I'm worried about it getting sore.

 But overall... things are good. It's great to be onto the next stage.

Crawling in Boots and Bar

Starbaby has now been in his Boots and Bar for 3.5 weeks (24 days, if we're being exact) and is doing wonderfully. He doesn't bat an eyelid at them, and is now very used to them going back on after his hour off, so is getting slightly better at lying still (as long as he's got something to hold) which makes getting them on a lot easier. At first, it took so long to get them right that we needed Daddy sitting with him on his lap and entertaining him with bizarre baby youtube videos, but now I can do it on my own and generally get them on before he tries to crawl away.

Speaking of crawling, take look at this!

I'm one proud mama. He's been crawling in his BnBs 'full time' for a week or so now. Amazing for a little chap with low muscle tone, and a very weak left arm (not to mention his feet being fixed together). He first started commando crawling forwards 2 days before getting his Boots on, at about 10 months old. Within a week or so he was doing a few 'proper crawls', then 'collapsing' on his left arm, commando crawling just using the right for a bit, then pushing up for a few more proper crawls. Then sometime in the last week I noticed he was proper crawling all the time. My goodness! He is doing so, so well. We have done physio exercises many times a day, every day since he was a few weeks old, and he's come so far. When he was born his left arm was totally floppy, no movement whatsoever. It's still a fair bit weaker than the right (which isn't 100% itself) and is also shorter than his left... but somehow it manages to share the job of supporting his weight, and... he can crawl!

Into Boots and Bar

2 weeks ago, the day we had been waiting for since starting Starbaby's talipes treatment 9 months earlier finally arrived.

We managed 3.5 weeks in his post-tenotomy cast with no slippage, and on the 29th January we made the move into BnBs. The first day was wobbly, the night wasn't easy (but wasn't anywhere near as bad as I feared) and by late morning the next day he had re-learned how to crawl around already. Particularly impressive, since he had only learnt to crawl without BnBs 3 days earlier! 

Since then, he has totally bowled me over in how well he's done in them. He can get around faster than ever, is sleeping pretty well (bar the 5.30am get-up-for-the-day... but we won't dwell on that) and seems very at ease in them. I was worried that with him being a fair bit older than almost every other baby that goes into BnBs (he's 10.5 months) that he would take much longer to adjust and be much more unhappy, but it has been the opposite. He's taken them so well in his stride.

Who knows what the future will bring, but for now I am so relieved that our first 2 weeks in BnBs have been so much better than I expected.

Here's Starbaby showing that he won't let his BnBs stop him getting somewhere he wants to go!

Starbaby's Op

It's now nearly 2 weeks since Starbaby had his op. Our consultant had talked about the possibility of a soft tissue release but in the end they decided to go with an 'early' tenotomy (i.e. a tenotomy being done well before the foot is at the 'nearly corrected' stage.

Our not-so-new-now hospital are fantastic - we were very happy with the care Starbaby received. As he has an undiagnosed neuromuscular disorder he is at higher risk of a potentially life threatening complication of general anaesthetic called Malignant Hyperthermia. So as a result of this, the anaesthetist decided to use an anaesthetic rather than the standard inhaled on, which was on the list of safe substances for MH sufferers... so basically she treated him as though he did have MH. As she said, one day it might be worth having him tested for it (which involves taking a sample of muscle) but she didn't want to find out he definitely did have it while anaesthetising him then! She was brilliant. His fab consultant also came to see him before the op and talked through everything. I can't fault the care he received.

We got to the hospital at 7.30am (after setting off at 5.30am) and only waited a minute in the waiting room before being taken to the ward by the nurse assigned to Starbaby for the day. After lots of checks, dressing him in a gown, putting on numbing cream for the IV, signing the consent forms and walking around with him in the sling to distract him from the fact he was hungry, the operating theatre was ready for him at nearly 10am. Before getting going with the anaesthetic, the anaesthetist produced some bubbles and started blowing them for him to watch! How lovely! She then passed them over to the lovely student nurse who was also with Starbaby for the day, and she blew them while I cuddled him and the anaesthetist put in his cannula and got the anaesthetic flowing in. It was quite disconcerting when Starbaby fell asleep... he went all 'slow', coughed a few times (the anaesthetist warned us to expect this, and said it was normal) and then flopped... it wasn't at all like normal falling asleep. Then we left the room, and they got on with his tenotomy. We waited back at the ward, and it was about 50 minutes before his nurse got the call to say he was in recover.

Poor little chap was very unhappy for a few hours after coming round... even breastfeeding only did a fleeting job of calming him before he was unhappy again. He was discharged in the afternoon, but continued to be very unhappy for the next 24 hours. The night was horrible - he cried and cried and cried, and then would sleep for 5-20 minutes snuggled into me before waking and crying again. He was so frustrated with his huge cast and just couldn't get comfy, and he was clearly still suffering with the after effects of the anaesthetic, as well as being in a bit of pain too.

It took 3 days before he was remotely himself again. Thankfully my parents had come up to stay and look after Big Sis while Starbaby had his op, and they were able to stay on for an extra day to help out... I was practically hallucinating from extreme sleep deprivation, so their help was very, very much appreciated.

At first Starbaby was really bothered by his cast, and it stopped him doing a lot of the skills he had recently mastered (squirmy crawling, shuffling/turning round in a circle on his bottom, going from lying to sitting) but over the past 13 days he has gradually worked out ways around the restriction and regained those skills... and added in a few more! He now has a very unique way of command crawling and can easily get from lying to sitting, both on his front and sideways.

I do feel sad that having had to adapt to life in a cast at nearly 10 months old, in a couple of weeks he's going to have to adapt all over again, this time to his Boots and Bar. And I also feel sad that had the fact his foot was unusual been recognised at our local hospital and it treated accordingly, he'd've been in full time BnBs from about 4-7 months... but instead he's going to be in them full time from 10.5-13.5 months, a time when he desperately wants to be on the move. I know it's going to be quite a major adjustment. I'm really worried about how his already wobbly sleep is going to be affected, and I hope he's able to find a way to be mobile in them as that is giving him so much satisfaction at the moment. My little wobbly boy who has to work so hard to achieve any physical skills has done amazingly... I hope he continues to amaze us as his talipes journey moves onto the next stage.

Goto Firefly Seat

I've got a lot to catch up on! I've downloaded an app to watermark my photos from my phone so I think I'll try to phone-update more.

Starbaby is doing amazingly. We're continuing to work hard on physio and over Christmas he has learnt to clap, wave, shake his head, copy things (generally head-shaking!), say mamama and bababa... and most excitingly, get himself from lying to sitting 'sideways' (our current main physio focus) and push himself up into a near-crawling position then to sitting from there. All that happened within the space of just over a week! Which explains why he's hardly been sleeping. ;)

Starbaby's foot op is next Monday. 6 days away. I'm really scared but just trying to picture it being over. It's going to be a very long day... we need to leave home at 5.30am to get to the hospital for 7.30am.

We have recently spent some of Starbaby's DLA money on a goto firefly seat. Due to his low muscle tone he can't sit upright in a chair, shopping trolley etc for more than a minute or two. The seat is amazing! You clip it on, clip Starbaby in with the 5 point harness and voila! He sits so stably and comfortably. I'm so happy we took the plunge and got it.

New Op Date

Starbaby's op has been rescheduled for 6th January - so that means a cast-less Christmas! It also means he won't be into BnBs until he's around 11 months at the earliest, but hey ho, I've accepted that.

He'll be 9.5 months when he has his op and goes back into casts... he's getting more and more mobile, so I wonder how having one leg held rigid will affect him. He's taken most things in his stride so far, so hopefully it won't affect him too much. I guess I'm most worried about going into BnBs... I was fine with it when we thought it was imminent at 5 months old... but it's a different kettle of fish when your child is nearing their 1st birthday and having them for the very first time. I desperately hope he doesn't struggle too much having his legs restricted. However, I can't help feeling sad about it... he has so many things to overcome physically as it is, due to his muscle condition, so adding BnBs into the mix is rather different than for most babies with talipes. All we can do it wait and see.

Starbaby is doing really well, overall. He's responding brilliantly to our physio exercises and if I put him into an almost-crawling position (kneeling down, leaning forward onto his hands) he can actually support himself with his hands for a brief time! This is <i>amazing</i>, as his hands and arms, particularly on his left side, are so much weaker than your average child. I am SO proud of him.

Another Delay

I guess I shouldn't be surprised, really... Starbaby's talipes journey has been far from smooth!

He's been a very healthy little guy since getting home from NICU at a week old... a very brief tummy bug (which everyone in the family shared) and a cold a month or two ago. But this week he's gone down with a stonker of a viral infecion, with an awful cough and difficulties breathing. So the hospital have had to postpone his op, which was due to be on Monday 25th. It's frustrating that he's got poorly just at this point, but postponing the op is totally the right thing to do - I don't want any risks taken with my precious boy.

He has been cast free for 8 weeks now, and the earliest his op will be rescheduled is 3 weeks from now, when he'll be nearly 9 months old. After it will follow several weeks of casts, then he'll go into BnBs (finally), probably at around 11 months old. It's so, so frustrating to have had so many issues... most babies do the '3 months full time' period between the ages of about 2/3 and 5/6 months, so that once they're starting to get mobile, they are only wearing them at night. Starbaby will be close to 1 before he even gets into BnBs at all! He obviously has other issues which impact on his mobility (mainly his weak arm/hand muscles) but even so, he is rolling around the room like a pro and getting closer to a sort of of wonky commando crawling. I do worry about how he'll cope, going into BnBs at such a late age... but at the same time, I feel pretty sure he'll amaze me with how he takes it in his stride, as he generally seems to.

He's really quite poorly at the moment... struggling a fair bit with breathing, although he's OK if he's calm. Thank goodness for breastfeeding... last night he was getting upset and that was making him cough then he was really struggling to breathe... I managed to get him to feed and that calmed him instantly.

He's been very floppy since getting poorly on Sunday night... it's a little scary to see such regression in his muscle ability, but I am 99% sure it is related to being under the weather, so should only be temporary. It's not much fun, though... some muscular conditions are progressive so at some point there is a regression in the muscles' abilities... I hope that never happens for my Starbaby but I know it's a possibility. He's been struggling to sit upright (even with support), despite having been sitting for nearly 2 months now, and he's not been able to hold onto things properly, even with his 'good' hand.

Hopefully he'll be better soon. For now, it's lots of feeding, mummy snuggles and distraction.

19 days...

... left until Starbaby has his second tendon op (along with a bit of 'tweaking' inside, apparently). We are absolutely loving having him cast-free, and I'm glad to say that even though when we were in the middle of his 16 weeks of casts it didn't feel much fun, the memory is very quickly fading into the past and it definitely hasn't affected Starbaby long-term - that's the main thing.

He's doing really, really well. His hands and arms are continuing to gradually improve, and I'd estimate that he currently has about 50-60% use of his right hand and 10% on his left - it may not sound much, but it's a lot more than he did a few months ago. He is getting better at picking up some food with his right hand, and uses his left hand a lot to 'brace' things against and support the work of his right hand. His arms are still generally quite weak but it isn't affecting him too much. We have some physio exercises to work on arm strength so that crawling is a possibility in the future, although I think that is still a while off. He rolls both ways like a pro, though.

Today Starbaby had his first proper blood test - he had 40-50, maybe more, heel prick blood tests when he was in NICU, but he'd never had a 'needle' one until this morning. I requested some numbing cream last time we were at the hospital, which although he had a bit of a reaction to it, meant he felt no pain and that made it a much better experience for both of us. He wasn't too impressed at having his arm held still, but I breastfeed him throughout (well, he popped on and off to see what was going on!) so that was a good distraction. It was testing his level of creatine kinase - if the result is high then it means it's likely he does have a muscular condition like muscular dystrophy. I'm expecting it to be high as he does clearly have something going on with his muscles, and if it is it'll mean we're one step closer to a diagnosis and the future seeming a little clearer.

Dates

This week we've received dates for two upcoming big-horrible-scary-things-under-general-anaesthetic aka Starbaby's tenotomy (plus a little more) and his MRI scan.

25th November is tendon surgery day and 11th December is MRI day. I look forward to them both being over... really nervous about my precious boy being anaesthetised/sedated twice in just a few weeks. I desperately hope it's worse for him than it is for me.

Other than that, things are ticking along quite nicely here and we're very much enjoying having a good chunk of time out of casts. To think that when Starbaby had he week break from casts about a month in, I thought to myself on the last day "this will be the last day he isn't in casts or BnBs to sleep until his 5th birthday" - how wrong I was! But I'm feeling fairly accepting of the fact our journey is a very bumpy one (after a fair period of feeling royally, um, unhappy about it all, and not in the least bit accepting) and am mostly able to appreciate the good things. Like baths, cast-free snuggles, and no "how did he break his leg?" enquiries from random members of the public.

Starbaby is now a pro at sitting up on his own - he amazed us all by sitting for the first time at 6 months and a few days, and is loving being upright and seeing the world from a different angle. I'm so, so proud of him. He still has significant muscle weakness, but just watching him sit, you can see how hard he is working to keep himself upright and steady - he's such a determined boy. I hope that the fact he's having to work hard to overcome some challenges will actually result in personality traits that will serve him well in life.

He really is totally and utterly amazing. I am head over heels in love with him, and fall further every single day.

Sitting

Last Monday, 23rd September, Starbaby started sitting up on his own! It was quite a sudden thing, as it was with Big Sis, and he has very quickly gone from looking like independent sitting was a good way off, to being incredibly sturdy.

I am so, so, SO incredibly proud of him. Through physio exercises and the most determined personality ever he has overcome so much in the 6 months he has been in the world. Not long ago he was so, so floppy, yet look at him now!

Sitting has opened up the world for him more... he's suddenly got really into reaching/grabbing and is constantly looking around for something else to grab at. His left hand and arm are still very weak, although they are improving, and his right hand is doing really well. He can grasp things when they're put in his hand, or held in front of him, and hold on to them for a good while (especially if it's food... that reminds me, I must write about our quasiBLW adventures soon)! He has even managed to pick a few things up from his high chair tray, although that's still fairly challenging. However, seeing how determinedly he has overcome all sorts of challenges in his life, I have little doubt that he is going to continue to amaze me.

Here's my little sitting boy, last week, at 6 months and a few days.

Castless - again!

On Tuesday we headed to hospital, 2 hours away, to have Starbaby's slipped cast changed... we were seen really quickly as our fab consultant and physio were popping in especially in between other commitments.

Starbaby's cast was removed by yet another lovely casting nurse (what a stark contrast to our old hospital) and then our consultant had a good look at his foot - she said it had lost some correction due to the slip, but that's not a surprise, and overall now it's settled I can see it's still in the position it seems to have stayed in over the past few weeks. It's proving a tricky one, this foot!

They started putting on his next cast, but within a few minutes I looked up from distracting Starbaby with lots of funny noises and realised they were taking the cast off. Our consultant said that she didn't feel confident that this cast wouldn't slip as well (the last 4 casts have all had some shiftage or a full on slip) and didn't want us and Starbaby to have to deal with the stress of that.

Starbaby has neurological talipes which is why his treatment journey has been rocky and why his casts keep slipping. It's frustrating, but at the same time I'm feeling quite used to it now. This is our new normal!

So the current plan is for Starbaby to be cast-free for the next  few weeks, and then he'll be having a tenotomy (operation to cut his achilles tendon) under general anaesthetic. Hopefully the result of that will be to bring his heel down and allow his foot to be manipulated into a position which will help the next cast stay put in the right position so his foot can finally get closer to being corrected.

Starbaby got his first cast nearly 5 months ago... we were expecting 2 months in casts, 3 months in BnBs full time and him to be free of them in the daytime around now. But this journey has ended up being trickier than we expected... I'm frustrated with our local hospital for many reasons... but I'm now feeling more accepting that this is the journey we're on, it's complicated, but we are now in the very best hands.

Another Bump in the Road

Starbaby's 16th cast appears to have started to slip again. I'm getting pretty used to casts slipping now, so am not feeling too down about this latest slip. Hey ho. Starbaby is on a long and bumpy journey but it's becoming normal to us now.

After emailing back and forth which his fab consultant and physio, they've asked us to bring him up tomorrow to have a new cast put on. Thankfully B's work are fantastic and his manager has agreed he can swap his unpaid leave from Wednesday to tomorrow so we can all go up together. It's a 4 hour round trip, Big Sis and Starbaby both have bad coughs, and Starbaby still hates the car if the journey lasts longer than 10 minutes and he's awake, so it's really not a trip I feel I could cope with on my own.

Looking on the bright side, it means Starbaby and I get a day of 1:1 time on Wednesday instead of spending Big Sis' nursery day going to the hospital.

Tomorrow...

... Starbaby will get cast #15 on. Fingers crossed for no slippage this time! Cast-slips are quite common with his type of club foot, so I know there's a good chance it will happen again at some point... but it would be lovely if we had a week of things going smoothly on that front.

We've sent in Starbaby's DLA application... although I feel he is deserving of it (he needs a lot more care than an 'average' 6 month old) I'm not overly hopeful as I know it can be tough to prove extra care needs at his age. But we'll appeal if he's turned down. We're spending so much on hospital parking, travel, unpaid leave from work etc that any extra ££ would make such a difference to us.

Starbaby, Big Sis and I had a lovely bath this evening... we've had one together every day bar one since his cast slipped and I'm so going to miss them once he's back in casts tomorrow. Hopefully it won't be for too many weeks, though...

Paediatrician Appointment

Today we saw Starbaby's hospital paediatrician.

Going to write quickly, just so it's all recorded, but I don't really want to dwell. Oh how I envy people who don't spent so much time at the hospital with their baby.

She asked me lots of questions about how he's changed over the 4.5 months since she last saw him, then examined him thoroughly. She confirmed he has hypotonia, most seriously affecting his arms, hands and legs and feet. His neck muscles have noticeably improved through the physio I've been doing with him. When she pulled him up by his arms from lying and instead of his head falling back, as it did until not long ago, it stayed 'solid' on his shoulders! Every time I pick him up or lie him down I incorporate an exercise the physio asked me to do... and it's made such a difference. Proud mama! His arms have improved a long way from where he started (little movement in his right, almost none in his right), again due to intensive physio from me, but are still very weak, particularly his left. It was hard to be asked "Can be do x? Can he do y?" and have to answer 'no' to  almost all of them, and as she examined him she mentioned several things he can't do (i.e. push up at all with his arms, push against pressure with his arms). 

Hypnotonia is just a symptom (muscle weakness/low muscle tone) so the next step is to try to get a diagnosis as to what condition it a symptom of.

She thinks he has a genetic neuromuscular disorder... that's what, in my layperson but googled-the-hell-out-of-because-he's-my-precious-boy opinion, I feel too. But even though I think it too, hearing it said by a doctor, and seeing how seriously she talked about various referrals was really quite upsetting. It made it feel real.

I guess I was hoping I might share my thoughts and she would say she didn't think he had a serious issue, but would make a referral to investigations to be sure. Instead, she was talking referrals before I even mentioned it myself.

Oh, my wonderful boy. You don't deserve this.

Next steps... MRI scan on his brain, blood tests, muscle biopsies and seeing a neurologist then once their investigations come back, a geneticist.

There are no available neurologist appointments at our hospital until February, but we may be able to see them at the hospital just very slightly further away sooner. I hope so. I know it may take a while, I know there's a chance we may not get a diagnosis... but if it's possible to know what Starbaby is dealing with, I want to know. I want to get an idea of what the future may hold for our wonderful boy and our family.

Yet Another Setback

.. but hey, we're getting pretty used to them now.

Starbaby went down with the sick bug on Sunday. My poor baby boy did the most impressive repeat projectile vomiting I have ever seen... all over me! We jumped straight in the bath as we were both covered... maybe that's why the Universe felt he needed to have this week cast-free?

We had hoped Daddy and I had escaped... but I spent all of last night throwing up, and Daddy joined in today. We really are the house of sick! I feel utterly rotten, as does Daddy, but thankfully the children are better now. I'm trying to keep drinking as obviously Starbaby is taking a lot of my fluids through feeding, and I've kept an oatcake and a slice of toast down today.

It means that we're not able to go to Starbaby's appointment tomorrow, as we'll still be infectious. So frustrating to have another setback... he will be 6 months old next week, has been on the talipes treatment rollwecoaster since he was 5 weeks old, and his foot still looks little different to how it did  after 3 or 4 casts. But I know this is going to be a long road... his club foot isn't the 'easily corrected' type so he's going to need a lot of treatment over the coming months, years and problem decade. And that's not including whatever will be going on as a result of his wider neuromuscular condition.

We're about to apply for Disability Living Allowance for Starbaby... his range of issues mean he needs a lot of extra care/support compared to other babies his age so we feel it's worth a shot. I'm not holding my breath as I know many people get turned down... but anything would be helpful as we're spending out so much on hospital visits and things he needs to help him at home. I have spent many hours working on the form, and now that's done I need to move onto putting together some further/supporting information before it's sent off at the weekend.

Well, that didn't work!

Today we should have been off to NewHospital to get a new cast put on Starbaby's slippy right leg... but Big Sis went down with a nasty sick bug overnight and spent all night throwing up so that scuppered that plan.

I considered going on my own with Starbaby but it's 4 hour round trip and he really struggled on car journeys, plus I was worried one or both of us would get sick while away from home.

I exchanged emails with our physio and the plan is to stay cast free too our normal appointment next Wednesday. Another setback... but we're getting pretty used to them by now!

What a few days

Yesterday Starbaby had his 15th cast put on. His 14th slipped a little - not enough to need removing, but enough to achieve little correction over the week.

The consultant thinks there's a chance we might still be looking at a standard-ish Ponseti treatment for Starbaby, possibly with the addition of a splint on his foot once he goes down to nights in BnBs. No free-feet time at all. That makes me sad. I want him to feel grass under his beautiful little feet next summer.

Soon after we got home I looked at his toes and thought they seemed a little further into his cast than when the cast was fitted. A couple of hours later and it was obvious the cast was slipping. I called the out of hours number which was engaged, so emailed our amazing physio-who-never-stops-working and got a reply very quickly. I'd sent her a couple of photos and she confirmed slippage, and said we should take the cast off as soon as Starbaby woke in the morning.

By morning his toes had totally disappeared inside, which actually made removing the cast fairly easy. He had a lovely soak in the bath, then I managed to remove the top couple of inches, then cut down towards the knee (with Big Sis' blunt scissors) and I hadn't cut much at all before I was able to slip the rest of the cast off his leg.

We couldn't get to the hospital today (it's a 2 hour drive away) as Daddy had an important work thing and my car was having its MOT, so we're heading up tomorrow. Big Sis will be at nursery again (she does Wednesdays and Fridays for her 15 free hours) which is handy, and Daddy will need to take another day of unpaid leave. It's really adding up, but we don't have much choice - Starbaby hates the car and needs me next to him to stand any chance of him staying calm, so we need 2 adults if we're driving. The train would be a 6.5 hour round trip, which I'll do if there's no other option, but the car with both of us is much easier. Thankfully his work have been very understanding and supportive, which makes a huge difference.

Hopefully Cast #16 will stay on for longer than 17 hours!

Check me out...

... in my funky paw print cast!

... and in my funky new chair to help me strengthen my muscles.

(Aged 23 weeks, in cast #14/1a)

Home in a Paw Print Cast (#14)

What a day! We left the house at 8.20am and were finally back home at 7.45pm.

Starbaby's new consultant was excellent and really treated him as an individual (rather than just 'a foot') and considered everything that's going on with him in addition to his talipes. She believes (which I had feared) that he has a neurological muscle disorder, and his talipes is part of that as opposed to being isolated. Whenever I raised the possibility with our old consultant/casting nurses that his foot issues might be part of a wider condition my comments were dismissed with a "we need to treat the foot first" comment. It was refreshing to have someone really, properly look at Starbaby and try to understand his issues and how they're linked.

It could mean he needs a different approach to his treatment to the standard Ponseti Method, and perhaps surgery down the line. He's in a cast now (complete with funky paw-print reinforcement to stop him bashing it to pieces on the floor!) and in a few weeks may have one foot splinted rather than the boots and bars which we were expecting. We shall see. It feels strange to think that his treatment might not be following the route we had got our heads around (casts, tenotomy, BnB) and that almost everyone who has a child with fixed talipes experiences. I don't know of anyone whose child's talipes has been deemed to be part of a wider condition and needing different treatment from the off.

Next step, neurologist referral for more investigations and tests (we see Starbaby's paediatrician in the middle of September so will be requesting that then). We could be staring down the barrel of a potentially life-changing diagnosis, but apparently it may take some time (perhaps even years) to get all the answers for our very special boy.

For now, I am incredibly glad I trusted my instincts which were screaming at me that something wasn't right with his treatment in his previous talipes clinic.

Big Sis and Starbaby were both superstars during the 11.5 hours we were out (only the last hour of the journey home contained several stops for calming-down-breastfeeds and a very unhappy little Starbaby at a few points), and it was great to be able to pop in on some very good friends of ours on our way home for a very late lunch and some delicious chocolate-star(baby)-cake.

Tomorrow's the day...

... that Starbaby goes back into casts.

We've had an amazing 3.5 weeks cast-free. Yes, his foot has regressed a fair bit, but my goodness it has been worth it. Baths! Freedom to dress him in whatever we want! No worries about his leg overheating! People not staring and asking how he broke his leg! A little taste of normality... it's been great, although bittersweet in a way as it's reminded me what we are missing.

We've had so many baths... some with just Starbaby and Big Sis but most with me as well, and a few on holiday with Daddy too (our bath at home is too small for all 4 of us, unfortunately)!

Starbaby has also progressed a lot physically in the last few weeks... perhaps it's coincidence, but I think not being hindered/focused on a cast on his right leg has really helped him develop in other areas. He has an as-yet-undiagnosed muscle condition which affects him globally, but especially in his arms, wrists, hands, fingers, neck and 'trunk' (back/front) but recently he has become a pro at rolling, been (with help, sometimes) holding things with his right hand and bringing them to his mouth, and is also pulling his head/upper body forward as if he's trying to sit up.

I hope that he continues to get stronger and stronger even with a cast on... he's going to need that strength come Boots and Bar time in a couple of months!

Wish us luck for the 4+ hour round-trip-with-a-3-year-old-and-car-hating-baby tomorrow...!