Talipes Clinic Visit TEN

Yes, TEN!

This was our first hospital visit of 3 this week... feel like we spent half our lives there!

After 9 weeks of treatment Starbaby's foot has finally reached the dizzy heights of a '1' (it as a 6, the most severe), which hopefully means only another month or so in casts (in order to reach zero), one small operation, and then he'll be into Boots and Bars. We're getting there!

So proud of my superstar for being calm and happy both when his cast was taken off and the new one put on today. He has certainly charmed all the nurses! Next stop, hand surgeon appointment on Thursday...

 

Starbaby's feet, just after his cast was removed on his right foot. The dressings are where he was sore - thankfully, although the skin isn't exactly 'happy', he has no more open sores.

Gorgeous foot!

Both beautiful feet.

Photos from 9th clinic visit

Here are photos from our 9th visit to the talipes clinic... Starbaby's foot had been in 2 casts since his week off, and was graded a 2.

Gorgeous foot... and in the background, the room where we bath Starbaby in between casts.

Beautiful boy! Castless!

Both of Starbaby's feet. His left foot has some muscle imbalance issues so it's a little 'pulled up' at the joint and the toes, so they won't 'match' totally when the treatment finishes... but isn't his little talipes foot looking fab?

Another angle. Cute foot!

He only gets to see this foot for an hour a week!

Groundhog Day

Tuesday this week (25th) saw our 9th visit to the talipes clinic since Starbaby's birth - it's getting to feel a little like groundhog day. When we finally have our first Tuesday without a hospital visit I am going to have to find something extra-specially-special to do to celebrate!

The top of Starbaby's foot looked a bit sore when the cast and dressing came off, but thankfully after a birth we could see that the skin wasn't broken. His foot was graded a 2, the same as it was a month ago, when he had his last cast before his 'week off'. I'm desperately hoping when his 8th cast is removed on Tuesday that the skin hasn't broken again.

Starbaby had a lovely bath... lots of smiles. It's so hard not being able to bath him at home, or bath with him, though. One day...

I'm finding myself quite jealous when I hear of other babies for whom the cast stage of the treatment goes more smoothly and more quickly. There are many babies on the facebook group who are younger than Starbaby and are already in BnB. I think we're looking at him being about five and a half months before he's in them full time, which means nine and a half months or so before he's down to 14 hours. That's a long time.

We'll get there, though.

This coming week we have three hospital trips. Talipes clinic on Tuesday, Hand Surgeon on Thursday and Physiotherapy on Friday. The hand surgeon appointment is one I am both looking forward to and worrying about. Having a diagnosis (or at least an indicator) of what's going on with his hands may shed some light on whether we're looking at a global condition for him, or just several different issues combined. It'll be good to have some more information but at the same time I worry what the news will be. Fingers crossed.

8th week of treatment

Starbaby is now in his 7th cast, and his 8th week of talipes treatment through the Ponseti method.

Yesterday's cast change wasn't much fun. The top of his foot is getting sore again and one of the nurses doing his casting upset me by saying a few things, including that it would 'get worse when he's in boots and bars'. :( I was feeling very fragile... it's hard going back to the hospital every week where there are reminders everywhere of Starbaby's tough early days... and felt very disheartened when his foot was graded the same as it was 4 weeks ago (2.5).

I think the nurse felt I was questioning the treatment he was getting, which I wasn't... I was just having a bit of an emotional-outpouring-moment about how hard it is to see my precious little boy hurting and with no end in sight for the casting stage yet. A little sensitivity would have gone a long way. This is hard.

I just hope next week his sore hasn't opened, meaning another week off casts, and another regression.. It's disheartening for his foot to be the same as it was after just 3 weeks of treatment, yet we have been going for 7 weeks.

Starbaby had a lovely bath. However, the clinic is getting pretty busy so we didn't spend too much time in the bathing room (which we were already sharing with one other lovely family) as we knew there were others waiting.

Here is Starbaby and his feet after 6 weeks of casts... getting there... slowly.

... and this next photo was was meant to be of his foot but my little point-and-shoot camera focused in the wrong spot (I usually photograph with my lovely SLR but use the little camera for hospital or quite capture-the-moment shots at home. But the reason I'm sharing it as it shows that Starbaby can now get his hands up to his face, and he's having a good go at sucking them!! He can't suck his thumb or fingers 'properly' because of the angle his wrists are at, and the lack of movement in his fingers, but he is really trying hard! 

There's so much that I took for granted with Big Sis but is utterly amazing this time round. He has major difficulties in moving his arms, hands and fingers but with lots of exercises and activities he's improving quite a bit. So proud!

One little foot, one big pressure sore...

Another angle... looking nice and straight again (after relapsing during our cast-free week) but still quite a way still to go to lift the foot up (if you look back to previous weeks you'll see we're around the stage we were after 3 casts now).

I just want to kiss this beautiful little foot! Comparing this photo to the 'sole' one from last week makes me feel a bit better. Even if his score didn't change, his foot did improve a little.

Week 7 almost done

My goodness, time is flying! My wonderful little Starbaby is nearly three months old. It feels like yesterday that he was born, yet at the same time like he's been here forever. Before he was here, life was wonderful, fun and busy, but looking back it seems relatively empty because he wasn't there. I love having two children and I feel so lucky that we got there in the end.

This week seems to have been OK on the cast front, although obviously we won't know how Starbaby's foot is doing until his cast is changed tomorrow.

I had been feeling like I wasn't in any rush to get onto BnB, but after the cast making his foot so sore, I am actually starting to get 'itchy feet' (!) to get onto the next stage. I'm definitely not looking forward to him being in BnB in terms of babywearing, but I am keen to get the cast stage over and done with so we can stop going to the hospital every single bloody week (sorry... but it really is getting hard to lose every Tuesday with my two wonderful children to a place I really hate going back to) and can start enjoying regular baths again. We might even get to go swimming with Big Sis and Daddy on Sundays!

I am probably going to get Starbaby weighed tomorrow. I'm totally confident that he's growing wonderfully, but I'm just interested to see how much he weighs because I suspect he may be around double his birth weight now. Amazing! I held his first cast against his casted leg today, and already there is a huge difference. My tiny 5lb 11oz little boy isn't quite so tiny now.

Last Friday we went into the local town to do a bit of charity shop shopping. It was one of the first times I've been out with Starbaby's cast very obvious... usually it's mostly covered by trousers or fully covered by a babygrow, but he was wearing shorts-dungarees. so in the sling almost his entire cast was obvious. SO many people stared at him as we were walking down the street. It was incredibly obvious... one person in a couple would glance our way, then a couple of seconds later, obviously prompted by the first person, their companion would look over as well, and then they'd start talking. Some people asked why he had a cast (generally "Has he broken his leg?" or "How did he break his leg?" - no, I haven't dropped him!!) and some people just talked about how lovely he was, ignoring the cast, which was nice.

Here are a couple of photos from just before Starbaby's 6th cast went on last week. Comparing with the week before, you get an idea of just how much his foot regressed during his cast-less week. I really hope his sore isn't back when they remove the casts tomorrow.

Casting Day #7 - Cast #6 is (finally) on!

We had an absolutely wonderful cast-free week - baths every day! - and as his foot is pretty much healed, Starbaby's right leg is now back in a cast. This is cast #6 but unfortunately despite spending a huge amount of time doing the stretches we were shown, his foot has regressed a fair bit (possibly due to his muscle imbalance issues), so his cast-free week will probably add another 3 or 4 weeks onto the casting stage of his talipes treatment. I reckon he might finally go into 'Boots and Bars' when he's about 5 months old in August. 

During the actual casting, Starbaby was flashing smiles at everyone - our charming little chap! He was grumpy afterwards but as the cast dried out, he cheered up a fair bit. Onwards and upwards! 

Also, the first of his little sensory toys I ordered on the request of the physio arrived today - a fab little spiky 'massage ball' to help stimulate his hands and arms to see if it helps him move them a little more. We spend most of his 'free' awake time doing exercises (Big Sis helps too) - there's been some improvement in his movement but it's a long road and we don't yet know where it'll lead. 

♥ my darling little superstarbaby. :)

Cast Free Week

Starbaby and I are enjoying our cast free week very much! Unfortunately, despite huge amounts of massage/stretching exactly as shown by the consultant, his foot seems to have regressed a lot, and I worry how many casts it'll take to get it back to where it was. But I can't change that... he needed a break from casts to heal his little sore foot, so we may as well enjoy it.

Starbaby has had a bath every day since Tuesday apart from today, as we have been out all day. We've had a bath just the two of us, and he's had a few baths with Big Sis and one with all three of us (Daddy couldn't fit in too, unfortunately)! I've moisturised his leg and foot every day, given his whole leg lots of massage, and generally enjoyed snuggles without that pesky cast in the way.

It's given me a taste of what we're missing, which makes me sad. Oh, what I took for granted with Big Sis! If we're lucky enough to have more children, I will never take for granted having a baby with both legs 'free', not having to go to the hospital every week etc.

Tomorrow we're at the hospital for Starbaby's monthly physiotherapy appointment, then back the next day for cast #6 to go on.

6th Casting Day

Well, Starbaby's 6th casting day had an unexpected end... we came home with no cast!

Starbaby's sore foot had got much more sore over the past week, and the skin was broken in one place (my poor poor little boy!) so the consultant decided it was best to leave his leg without a cast for a week to let it heal. He showed me how to massage/stretch his foot in order to help reduce the chance of undoing any of the good work so far and we need to do that as much as possible over the following week.

I am sad that his foot is so sore... but very very excited about a week out of casts! I am looking forward to bathing with Starbaby, massaging his leg, snuggling with him minus the cast, breastfeeding without a cast and getting to know his new little foot. And if the week doesn't reverse any of the casting process... win all round! I hope he adapts to going back into casts this time next week ok...

Here are a couple of photos of Starbaby's foot this week, after cast #5 was removed.

Cast #5 is on

Casting Day #5 was hard. A combination of his current foot position and the recent warmer weather has resulted in a pretty sore leg and foot for our precious Starbaby.

It broke my heart to hold him sobbing as they put his new cast on. Feeling very sad that my wonderful boy has to go through so much just to get something that almost everyone else (understandably) takes for granted.

Apparently it looks like he'll have about 6 more weeks in casts before moving into the 'Boots and Bars' foot brace (a special boot on each foot, joined by a metal bar) which will be part of his life until he is 5 years old.

Lots of cuddles for my lovely boy this afternoon... I think we both need them.

Other than being poorly-sore, his right foot is looking amazing! What a change from before his first cast only 4 weeks ago.

3 casts down... how many to go?

Casting Day #4 for Starbaby was on Tuesday.

His lovely little right foot is still progressing well and bathtime was a hit once again. I spent a while talking to a lovely mum whose son was about to get his 1st cast on... so good to meet someone going through similar to us. I hope we get to chat again next week.

Starbaby's foot is now a 2.5 after 3 weeks of casts. I'm really impressed, it was so stiff to start with. It started as a 6, went down to a 4 after 1 week, then 3 after another week. Progress is slower now they're bringing his foot up, but I don't think that's a bad thing... it feels better to do something like this gradually without any rushing.

I don't know how much longer we have in casts, but actually I'm in no rush to finish them as I think the BnB stage will be more... intense. Being in casts has been nowhere near as bad as I feared... not bad at all, in fact. Of course, I'd rather his little leg weren't in a cast, but in terms of how it's affected Starbaby day to day... well, apart from not risking as much nappy free time so as to avoid soggy casts, it really hasn't made a difference to his or our lives. I know BnB will be different, though, and I'm not in any rush to get to that stage.

Here's Starbaby's beautiful foot this week. The crease on the bottom of his foot which was so deep to start with has pretty much gone - amazing!

We weighed Starbaby in between casts and he is almost ten pounds now!! That's 4 1/4 lb up on his birth weight of 5lb 11oz and over 2lb gained in the last 20 days alone. After his rocky start he's now doing amazingly!

End of week 2

Here are Starbaby's feet last Tuesday... 8 weeks old and after 2 weeks of casts

3rd Cast on.

This morning Starbaby had his 2nd cast removed. He's been slightly crankier than usual over the past week and after today I think it may be at least partly because he was doing some major growing and it made his casted leg feel a bit uncomfy. As he had grown it was very hard for them to remove it due to there being no gap between his leg and cast. Starbaby was calm to start with (despite having been woken 5 minutes into a sling-nap... again) but a little unimpressed by the end.

Afterwards we gave him his weekly bath which again he loved. We had to be a little quicker this time as there was a baby 2 days younger than Starbaby waiting to have her bath after him, and we also had to fit in seeing the physiotherapist before his new cast went on.

We've been given further exercises to do with his arms, and his paediatrician has referred him to the hand surgeon as she is concerned that he still has very limited movement in his arms and hands. Yet more hospital visits :(

Starbaby's foot is now a 3. It was noticeably more 'normal looking' than last week and a world away from 2 weeks ago. It is now pretty straight but pointing downwards, so the next stage is to stretch it into a normal 'sole downwards' position. I think we'll be visiting the hospital every Tuesday for a fair while to come.

I'm writing this from my phone while Starbaby sleeps on my chest in the ring sling, so can't upload this week's photos yet but I'll try to get them online soon.

Week 1 change

Here are 2 photos which show the change in Starbaby's feet during his first week in casts. Amazing!

The first photo was taken just before his first cast went on, and the second was taken between casts yesterday.

First cast changeover

Starbaby is now in cast #2.

Poor little chap had literally just fallen asleep in the sling when we were called in to have his cast removed so was a little unimpressed at being woken, but despite that he was calm quickly and put up fine with the rather scary-looking cast-cutting-scissors chopping his cast off.

After it was off (so lovely to see his leg and foot, although his foot looked quite unfamiliar) we were shown to the bathing room. It was wonderful to give Starbaby his first bath in 8 days and my little waterbaby loved it.

I even caught the tail end of a smile on camera!

The skin on his foot was a little peely after not seeing daylight for a week so I gently rubbed off the loose skin in the water and once he was out I put olive oil on his foot and leg to moisturise it.

Here are Daddy, Starbaby. Big Sis and 'Baby Sophie' chilling in the hospital bathing room before we we went back to have his new cast put on.

His foot was graded a 4, already a great improvement on the 6 (worst possible score) of last week.

He was very very tired by the time the cast was being put on (having had just 2 minutes of sleep in 2.5 hours) so cried a bit. They needed his leg still so despite not getting a positive reaction last week when I said I would like to breastfeed him during casting (in the end he was calm and happy so didn't need it anyway), today I sat right up against the 'bed' and decided to try. Starbaby lay angled towards me, turned his head and latched on... and was instantly calm. I think the physios quickly realised that breastfeeding was a fab way to keep him calm so they could manipulate his leg as they needed to. And Starbaby fell asleep! Have I mentioned that breastfeeding rocks?! ;)

His new cast is bent more at the leg than last week. His foot is set straight this week so apparently there's more of a chance it may slip so we need to keep a close eye on his little toes.

Feet update pics to follow soon!

Here is Starbaby...

... modelling his starry 'babyleg' cast cover a couple of days ago.

Today's is rainbow stripes... definitely jazzes up a plain white cast.

And so far... no poo-splosions in the leg area!

We're growth spurting at the moment so Starbaby is waking (and feeding) a fair bit at night, but his cast doesn't seem to have changed his behaviour in the slightest. I'm so relieved... and actually feel a little silly for worrying so much beforehand. But I only worried because I love him so much and just want him to be happy.

I'm really looking forward to when he has his cast changed on Tuesday and seeing how his little foot has changed.

Babylegs

The plaster of Starbaby's casts is quite crumbly and dusty, so I have put a 'babyleg' over it . They're baby legwarmers, and you can get a pair from china on ebay for barely over a pound... and they come in some fairly funky patterns! It's quite long as he's still small (7lb 12oz in his casts today) but that worked well as it meant they kept his little toes warm yesterday, when they were made cold by the drying-out plaster.

I've put the top of the babyleg right over the top of his cast+padding, so that if we have any poo-slosions, they should bear the brunt of the leakage, leaving the cast poo-free. That's the theory, anyway!

First Night

Amazingly, my little boy seems to be taking having one of his legs in a plaster cast totally in his stride. Yes, he's cranky sometimes... but he was cranky before the cast went on, so no change there! Last night he woke several times... more than normal... but that could easily have as much to do with him being in prime growth spurt territory as the cast. Thankfully feeding lying down is no different to before his cast went on, and he doesn't seem uncomfy when lying down.

I was worried the cast would affect the movement in his right leg a lot, but other than obviously not being able to bend it, he can lift it up easily and still give really hefty kicks with it. He can also move his hip just as before, which means he can still easily 'sit' on my lap leaning against my bent legs, something I wondered if we might not be able to do.

I was so worried about Starbaby going into casts, but have been amazed at how ok he has been about it, and how quickly him having one 'solid leg' has become something I barely bat an eyelid at.

First cast is on

Our journey has begun. Starbaby's first cast is on, and he is currently fast asleep in our wonderful wrapsody bali stretch wrap. Considering my biggest worry about him going into casts was whether or not he could still sleep comfortably in the sling, I am pretty happy!

Our hospital visit was an emotional one for me - I was so worried about Starbaby being upset during casting, and also had memories of his birth triggered by seeing the white and blue hospital towels on the casting 'bed' - but the most important person in all this, our little Starbaby, took it all in his stride. I was amazed - this is the baby who screams through almost every nappy change and is very unsettled a lot of the time. He had a good breastfeed, then lay on the casting bed, propped up with a pillow and held by my arms, and gazed around the room in fascination as one consultant and three nurses got to work casting his leg. I am SO proud of him.

The cast is fairly substantial, but not as bulky as I imagined. The weird thing... which may sound obvious... is how hard it is! It's very bizarre having a little chap with one soft, kicky leg, and one fairly still, solid one. I bet I will get used to it quickly, though.

I am so so happy that he can still go in the sling comfortably... it's going to make this process much less disruptive for us all. The ring sling may not be quite as easy as before, as the material under his bottom/the top of his cast felt like it might slip out more easily, but using the stretchy wrap has so far been identical to before. I have made sure that the material which goes over his bottom and upper leg is stretched as widely as possible towards his knee so the upper part of his cast is well supported. As he's a little chap, his leg still sits nicely around my side and so far isn't in the way at all. I know it may be a bit different a couple of months from now... but by that time we'll be talipes babywearing pros. ;)

Haven't taken any photos of Starbaby's cast yet, as he's been snuggled up in the sling since we got back from the hospital, but here's our first talipes babywearing photo. His casted leg is his right one - you can barely notice a difference when he's in a babygrow!

Eve of Casts

Our last castless day has been spent snuggled in bed all morning (big sis was at nursery today), and with Starbaby snuggled in the sling whenever he was asleep (most of the afternoon and early evening today). Big Sis, Starbaby and I also had a wonderful bath all together later in the afternoon once she was home. Starbaby really loves being in the bath - so sad that he's going to miss out on baths at home for the next few months. Once he's out of casts I can see us bathing together pretty much every day!

He's asleep on my chest in the ring sling now... tonight I am going to snuggle him close, especially his gorgeous little right leg - I'm going to miss seeing it, and his gorgeous little 'curved foot' as Big Sis calls it. I'm going to say I'd like to breastfeed him while they're casting tomorrow... it would make it much easier for them since if he's screaming he'll be thrashing his legs around, and the only thing that successfully calms him when he's not happy is breastfeeding. Found a picture of a mum breastfeeding during casting in one of the official ponseti leaflets so hopefully should work ok, even if I do get covered in plaster!

This time tomorrow we'll be home from the hospital and probably trying to figure out a way to get him comfy in one of the slings...

It's not been easy to get a photo of Starbaby's feet as he kicks them so much... but I have finally managed! Here are a couple of 'before' photos:

Starbaby is here!

There's so much I need to write in here. And so little time! So I have decided, rather than waiting for that pipe dream of having enough time to write everything I want to, I'm just going to plunge in and get going. I can always add in entries in the future.

Starbaby was born on 20th March 2013 at 39+3, 11 days after his big sister's 3rd birthday. Far from the calm home water birth we had planned, I ended up having a very much unwanted but needed caesarean in the wee hours of his birthday. Over the previous day his movements had slowed and I felt like something wasn't right. On the doppler, his heartbeat was faster than usual, and I heard a couple of decelerations. My midwife and I went to hospital, hoping that I'd have a CTG which showed everything was OK and he was just having a sleepy day. Unfortunately the opposite happened... the CTG showed, without a doubt, that he was in distress and needed to be out immediately. Daddy and BigSis rushed in from home in the middle of the night, I was taken into theatre and Starbaby was born at 2.23am weighing 5lb 11oz. He was covered in thick meconium and very floppy. We got him out just in time.

After a few hours of skin to skin and breastfeeding, he was taken to NICU due to his blood sugars being dangerously low and him being so floppy. The week he spent there was the hardest week of my life... being separated from my little boy was so horrendous words cannot describe it. We both came home on 27th March.

Here he in NICU at 4 days old... lots of breastfeeding and skin to skin helped his stay there be as short as possible.

Starbaby has unilateral talipes in his right foot and muscle weakness/problems in his left foot, both hands and left arm/shoulder. We don't know the long term prognosis for sure, but we're hopeful that he should have fairly normal movement in his limbs when he is older.

It is obviously a relief that Starbaby doesn't appear to have any serious medical conditions - we knew there was a good chance he would, and compared to many things, talipes is cope-able with. Still, the treatment he requires seems daunting right now. I hope in a few months I will barely be batting an eyelid about putting on his boots and bars, but at the moment... I just wish my gorgeous, tiny, squishy little boy didn't have to go through weeks of plaster casts and years of boots and bars  in order to be able to walk.

Our little Starbaby gets his first cast on this coming Tuesday...