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!
Thursday, 5 September 2013
Friday, 30 August 2013
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)
Wednesday, 28 August 2013
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.
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.
Tuesday, 27 August 2013
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...!
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...!
Sunday, 25 August 2013
Two more days
Only two more days until Starbaby is back in casts. I feel a little choked up just writing that! The last three weeks of being cast free have been wonderful - baths every day, nobody staring or asking how he broke his leg, squishy little legs to snuggle... I feel really quite sad at the thought of him being in a big cast again.
Despite the fact he's had a cast put on 13 times in the last 5 months, he seems so much older than he was when the last one went on nearly 4 weeks ago, and I think he is not going to be impressed to have his leg restricted. Thankfully, though, our new hospital encourage breastfeeding during casting so hopefully that will calm him during the actual casting process (our old hospital weren't supportive of it).
I'm trying to view the casts as a means to an end... hopefully within 6-8 weeks Starbaby will be done with casts and onto Boots and Bars. I know that will bring its own challenges... but thinking of the positives... it means we can have baths again!
Starbaby is quite a cranky little chap most of the time, but the place he is always, always happy is in the bath. That is the thing I will miss most when he's back in casts.
One day at a time, one step at a time, we're getting there...
Wednesday, 14 August 2013
Isle of Wight
On Monday we got back from a wonderful and very much needed 5 day break in the Isle of Wight.
Starbaby got to feel the sea and sand on his feet for the first time. He was intrigued!
It was great not to have to worry about keeping sand out of his cast. He's now 10 days into being cast-free and is due to have his next cast on (cast 14/1a) at the new hospital on August 28th.
I have been massaging and gently stretching his foot and although it has relapsed very slightly, it still feels quite flexible. Hopefully in 2 weeks we should be able to get an idea of how many casts it's going to take before he's heading into BnB. He'll need his tenotomy done again as any progress was undone by the last cast... I fear it may be under general anaesthetic as he's getting older, but I'm not thinking too much about that right now and just enjoying these few weeks of cast-less-ness.
Starbaby got to feel the sea and sand on his feet for the first time. He was intrigued!
It was great not to have to worry about keeping sand out of his cast. He's now 10 days into being cast-free and is due to have his next cast on (cast 14/1a) at the new hospital on August 28th.
I have been massaging and gently stretching his foot and although it has relapsed very slightly, it still feels quite flexible. Hopefully in 2 weeks we should be able to get an idea of how many casts it's going to take before he's heading into BnB. He'll need his tenotomy done again as any progress was undone by the last cast... I fear it may be under general anaesthetic as he's getting older, but I'm not thinking too much about that right now and just enjoying these few weeks of cast-less-ness.
Tuesday, 6 August 2013
All Change
No normal Tuesday cast-change update today.
There's been a lot of soul searching and instinct trusting going on in our household recently. And the result is that we've decided to move Starbaby's talipes care to a different hospital. It's going to be a 180 mile round trip to take him there, but the consultant is widely viewed as one of the top in the country (and seems very knowledgeable, caring and lovely via email), so we are willing to make that trip... we will do whatever we need to to ensure our little boy's special foot is being looked after well.
It's pretty heart-breaking to think Starbaby has had many casts over the past 3.5 months that might not have been necessary... but we have to look to the future.
I really feel like we have made the right decision. Both Daddy's and my instincts are saying that.
So, Starbaby is still cast free, until we (re)start treatment at our new hospital in a week or two. And since we're off on a mini-holiday to the Isle of Wight tomorrow, Starbaby will hopefully be enjoying his first paddle in the sea in a couple of days!
There's been a lot of soul searching and instinct trusting going on in our household recently. And the result is that we've decided to move Starbaby's talipes care to a different hospital. It's going to be a 180 mile round trip to take him there, but the consultant is widely viewed as one of the top in the country (and seems very knowledgeable, caring and lovely via email), so we are willing to make that trip... we will do whatever we need to to ensure our little boy's special foot is being looked after well.
It's pretty heart-breaking to think Starbaby has had many casts over the past 3.5 months that might not have been necessary... but we have to look to the future.
I really feel like we have made the right decision. Both Daddy's and my instincts are saying that.
So, Starbaby is still cast free, until we (re)start treatment at our new hospital in a week or two. And since we're off on a mini-holiday to the Isle of Wight tomorrow, Starbaby will hopefully be enjoying his first paddle in the sea in a couple of days!
Sunday, 4 August 2013
Unexpectedly Castless
Starbaby is unexpectedly cast-free today. I had had a niggling worry that his cast was slipping, but I was such a mess after Tuesday's hospital appointment that I didn't properly register exactly where his toes were, so I wasn't totally sure... but this morning it was very obvious that his toes had all but disappeared inside the cast. Definite slippage.
After asking advice from the lovely ladies on the Happy Feet Talipes facebook group (which has been an amazing source of support for me since last November) we decided to soak of Starbaby's cast in the bath. A slipped cast can result in sores and won't be correcting the foot as it should be.
Here's Starbaby's disappearing toes...
Starbaby thought all his Christmasses had come at once when we put him in the bath! It felt very wrong to be getting his cast after 13 weeks of protecting it from the water... but it needed to be done.
Soon after I took this photo, I jumped in with him as it became obvious it was going to take a fair time and Daddy's back was starting to ache from leaning over. For a while I thought we were going to end up taking a trip to A&E with a sopping wet cast, but then I managed to find the end of the strip of plaster and after 25 minutes of (gently) yanking and peeling, his leg was free.
His foot is definitely no more corrected than it was last Tuesday, and may even be worse. It is less swollen, thankfully... but I assume that is why the cast slipped. I questioned on Tuesday whether it was worth re-casting him when he was so swollen, but was told they didn't want to lose the work the tenotomy had done... but in casting a swollen foot, which then went down and caused the plaster to slip, we have ended up losing anything the tenotomy did anyway. To be honest, after seeing his foot last week I question whether the tenotomy did anything good at all... hmmm....
The top of his foot is more sore than normal - I think despite it having a dressing over it, the slipped cast has rubbed him there.
The bottom of his foot is still very curved... I don't feel we're close to full correction at all, yet now, nearly 2 weeks post-tenotomy, most babies are going into BnB.
Now we need to think very carefully about what to do next...
Saturday, 3 August 2013
Week 14 of treatment
And so the groundhog-day-feeling continues.
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I used to feel quite content being in the casting change as Starbaby didn't seem bothered by his casts... but as his leg and foot have become more sore they seem to be affecting him more... which obviously affects me too.
And as time passes I become more aware of how 'late' he will still be in full time Boots and Bar... as it stands, if he goes into them in the projected 4 weeks, he'll be wearing them just at night by Christmas. Nine months old. He may be trying to crawl in BnB... and given he has great restrictions in his arm/hand movement too, I worry so much that he'll get frustrated by not being able to move the way his brain wants him to.
I know it has to be done... but I wish his casting stage had been over in just a couple of months, as it is for most babies.
Here's a photo of Starbaby's feet at Tuesday's cast change. His little talipes foot is sore and swollen. :'( It still feels like the front of his foot is being moved up but the heel isn't moving as much, despite his tenotomy, resulting in his foot having a curved bottom. Hopefully his foot won't be swollen this week and we'll be able to get a better idea of whether it's improved. It has been graded a 1.5 recently (revised from the 1 we were told for several weeks... it seems his heel crease wasn't being assessed quite right). Seeing that it was a 2.5 after just 3 casts, you can probably see why we're a bit concerned...
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Here's my wonderful boy in his 13th cast. He hasn't been happy at all the last few days, but I managed to capture a rare happy moment (encouraged by lots of the usual silly-Mummy-noises which accompany my baby-photo-taking)!
Thursday, 1 August 2013
Thirteenth Cast
Yesterday Starbaby went into his 13th cast. We spent 4 hours at the hospital in the end - cast removal, bath, seeing consultant, x ray, waiting for results, seeing consultant again then casting.
Starbaby's whole leg is getting progressively more sore with every cast, and yesterday it was quite swollen so the consultant sent him for an X ray to check things out. The X ray chap was one of the nicest, most considerate members of staff we've met at the hospital (one or two could take a leaf out of his book) and went out of his way to make sure Starbaby was calm and happy during the X ray (no mean feat, considering he had just been woken literally 3 minutes into a much-needed nap in the sling). The X ray showed everything was ok... so it was back on with the next cast.
Things feel like they're going very slowly at the moment... there have been several delays for Starbaby (for logistical rather than medical reasons...e.g. annual leave) and it still looks like he'll have at least 4 more weeks in casts. This feels never-ending at times, to be honest. We were expecting the standard 6-8 casts, and instead he'll have at least 16 casts and 17 weeks in the casting stage. But we'll get there!
Starbaby has been coping with his casts amazingly... he was grumpier than normal towards the end of the last casting-week, which I think was related to his sore leg, but thankfully has been noticeably happier since yesterday's cast went on. It helped that we had a fab day out today with a friend and her children - he's always happier when we're out and about.
On the non-talipes front, we're continuing with his list of physio exercises - his right hand can grasp now, and that arm has fairly good movement. His left hand and arm is still very weak, but hey, if you're going to have one strong hand, better that it's your right, in a world that's built for right-handers, I guess?! The muscles at the back of his neck have improved massively since we started a new exercises after the last physio appointment, and his neck is now no longer 'pulled back' all of the time - it's amazing to see that change. I feel that at some point we're going to get a diagnosis that brings everything together... I think probably of a genetic condition impacting on some bones and muscles... but his improvement gives me hope that whatever the 'issue' is, it is not going to be something which has a massive impact on his life.
So proud of my boy. He's been through so much in his first 19 weeks in the world and is doing so wonderfully.
Starbaby's whole leg is getting progressively more sore with every cast, and yesterday it was quite swollen so the consultant sent him for an X ray to check things out. The X ray chap was one of the nicest, most considerate members of staff we've met at the hospital (one or two could take a leaf out of his book) and went out of his way to make sure Starbaby was calm and happy during the X ray (no mean feat, considering he had just been woken literally 3 minutes into a much-needed nap in the sling). The X ray showed everything was ok... so it was back on with the next cast.
Things feel like they're going very slowly at the moment... there have been several delays for Starbaby (for logistical rather than medical reasons...e.g. annual leave) and it still looks like he'll have at least 4 more weeks in casts. This feels never-ending at times, to be honest. We were expecting the standard 6-8 casts, and instead he'll have at least 16 casts and 17 weeks in the casting stage. But we'll get there!
Starbaby has been coping with his casts amazingly... he was grumpier than normal towards the end of the last casting-week, which I think was related to his sore leg, but thankfully has been noticeably happier since yesterday's cast went on. It helped that we had a fab day out today with a friend and her children - he's always happier when we're out and about.
On the non-talipes front, we're continuing with his list of physio exercises - his right hand can grasp now, and that arm has fairly good movement. His left hand and arm is still very weak, but hey, if you're going to have one strong hand, better that it's your right, in a world that's built for right-handers, I guess?! The muscles at the back of his neck have improved massively since we started a new exercises after the last physio appointment, and his neck is now no longer 'pulled back' all of the time - it's amazing to see that change. I feel that at some point we're going to get a diagnosis that brings everything together... I think probably of a genetic condition impacting on some bones and muscles... but his improvement gives me hope that whatever the 'issue' is, it is not going to be something which has a massive impact on his life.
So proud of my boy. He's been through so much in his first 19 weeks in the world and is doing so wonderfully.
Monday, 29 July 2013
Sleep Regression
Tomorrow is cast change number... I've lost count... it'll be cast #13 so that means clinic visit #14 due to our 'lost week'. I think I'm going to have a big celebration the first Tuesday we don't have to go to the hospital!
Hopefully tomorrow we'll be able to see that Starbaby's tenotomy has done its thang and his heel is coming down. Fingers crossed.
We're in the midst of the dreaded 4 month sleep regression at the moment...
Yaaaaaawn.
Right, it's bed time...
Hopefully tomorrow we'll be able to see that Starbaby's tenotomy has done its thang and his heel is coming down. Fingers crossed.
We're in the midst of the dreaded 4 month sleep regression at the moment...
Yaaaaaawn.
Right, it's bed time...
Tuesday, 23 July 2013
Tenotomy Day
Starbaby had his tenotomy this morning... glad that one's over!
Big Sis spent the morning with her best friend, and had a wonderful time. It was good to know she was having fun, and for Daddy and I to be able to focus wholly on Starbaby.
First he had his cast removed as usual, and then we went through to the bathy-room for a quick splash in the baby bath - as usual, Starbaby loved being in the water. Now, at 4 months, he is quite the little kicker, and manages to cover the floor in water very quickly!
Once he was dry and nappied, one of the lovely Playworkers came in and put some anaesthetic cream on the back of his foot, and covered it with two transparent plasters-without-the-non-sticky-bit (if that makes sense!) to make sure the thick cream didn't leak out.
It needed 40 minutes to work, so we went for a little walk so Starbaby could have a sleep in the ring sling while we were waiting. Then we were taken to the treatment room, the plaster-thing removed, and the cream wiped off.
I lay Starbaby on the 'bed' and was given a little bit of sugar solution to help distract him from any pain. The consultant came in, and instructed his 'deputy' and the nurse on how to hold Starbaby's legs etc...by this point I wasn't really taking much notice of them, as I was totally focused on my little boy.
The tenotomy wasn't much fun - Starbaby got quite upset - but at least it was over quite quickly. The consultant did the cutting part (eeek) and then I heard them talking about putting steri strips on. As soon as it was done, I picked up him and fed him, while Daddy held a dressing onto the back of his foot to make sure it didn't bleed everywhere. It took a good few minutes to calm him down, but we got there in the end and then he had a lovely, snuggly feed.
While I was feeding him, the nurse put a permanent dressing on the back of his foot, as well as the standard dressings he now has every week on the top of his foot and back of his knee, as it's quite sore in both those places.
Then it was back to the normal casting room to have his cast put on, this time by the consultant and nurse, rather than by two nurses. Starbaby got quite upset, so despite the fact my hospital haven't been supportive of breastfeeding-while-casting, I leant over him and fed him - he was still in the position they needed him, but he was calm. In fact, the nurse didn't even notice at first! Then she said "I was wondering why he was suddenly so calm!"
Big Sis spent the morning with her best friend, and had a wonderful time. It was good to know she was having fun, and for Daddy and I to be able to focus wholly on Starbaby.
First he had his cast removed as usual, and then we went through to the bathy-room for a quick splash in the baby bath - as usual, Starbaby loved being in the water. Now, at 4 months, he is quite the little kicker, and manages to cover the floor in water very quickly!
Once he was dry and nappied, one of the lovely Playworkers came in and put some anaesthetic cream on the back of his foot, and covered it with two transparent plasters-without-the-non-sticky-bit (if that makes sense!) to make sure the thick cream didn't leak out.
It needed 40 minutes to work, so we went for a little walk so Starbaby could have a sleep in the ring sling while we were waiting. Then we were taken to the treatment room, the plaster-thing removed, and the cream wiped off.
I lay Starbaby on the 'bed' and was given a little bit of sugar solution to help distract him from any pain. The consultant came in, and instructed his 'deputy' and the nurse on how to hold Starbaby's legs etc...by this point I wasn't really taking much notice of them, as I was totally focused on my little boy.
The tenotomy wasn't much fun - Starbaby got quite upset - but at least it was over quite quickly. The consultant did the cutting part (eeek) and then I heard them talking about putting steri strips on. As soon as it was done, I picked up him and fed him, while Daddy held a dressing onto the back of his foot to make sure it didn't bleed everywhere. It took a good few minutes to calm him down, but we got there in the end and then he had a lovely, snuggly feed.
While I was feeding him, the nurse put a permanent dressing on the back of his foot, as well as the standard dressings he now has every week on the top of his foot and back of his knee, as it's quite sore in both those places.
Then it was back to the normal casting room to have his cast put on, this time by the consultant and nurse, rather than by two nurses. Starbaby got quite upset, so despite the fact my hospital haven't been supportive of breastfeeding-while-casting, I leant over him and fed him - he was still in the position they needed him, but he was calm. In fact, the nurse didn't even notice at first! Then she said "I was wondering why he was suddenly so calm!"
Here's my beautiful little boy, post-bath:
... and his gorgeous foot (corrected bar the heel which needs to 'come down' - hopefully the tenotomy will fix that...
My two beautiful boys!
Monday, 22 July 2013
Tomorrow...
... Starbaby is due to have his tenotomy (assuming the consultant is back from his 3 week holiday)!
I've been trying not to think about it too much. He's due to have it under local anaesthetic (thank goodness... would be horrible to withold breastfeeding from him for even a few hours in this heat) but as his casting stage has taken a fairly long time, he's obviously now at a stage where he likes to move... a lot... so I'm a bit worried about him staying still.
My hospital haven't been supportive of me wanting to breastfeed him during casting... but if it's proving hard for him to stay still tomorrow, or he's getting distressed, I'm going to discuss it again. I'm sure they'd rather me dangle-feed him than risk cutting something they shouldn't because he's thrashing around!
Think of us all tomorrow morning.... *gulp*
I've been trying not to think about it too much. He's due to have it under local anaesthetic (thank goodness... would be horrible to withold breastfeeding from him for even a few hours in this heat) but as his casting stage has taken a fairly long time, he's obviously now at a stage where he likes to move... a lot... so I'm a bit worried about him staying still.
My hospital haven't been supportive of me wanting to breastfeed him during casting... but if it's proving hard for him to stay still tomorrow, or he's getting distressed, I'm going to discuss it again. I'm sure they'd rather me dangle-feed him than risk cutting something they shouldn't because he's thrashing around!
Think of us all tomorrow morning.... *gulp*
Sunday, 21 July 2013
Rock and Roll Baby
Here is my little air guitarist showing off his graffiti'd cast this week...
I decided to try out something with his cast this week... and so far it has resulted in MUCH more positive conversations than the standard 'How did he break his leg?' I think because after people have read it, they already know 'the basics', they have been more likely to ask different questions, which has made conversations much more enjoyable than having to do the broken record "He was born with talipes... club foot... and he has a plaster cast on to help his foot grow straight..." Any other talipes mamas identify?!?
I'd still much rather people asked a question (even if it's one that feels like they're asking if I dropped him or Big Sis squashed him...!) than stared. The stares are the hardest thing. I'm so used to Starbaby's cast that I often assume people are staring because he's gorgeous, or because I carry him in a sling... then I remember that it's probably for another reason.
And now for a couple of gratuitous 'cute baby' photos of my beautiful Starbaby at 4 months old!
I love him to the stars and back!
Tuesday, 16 July 2013
Physio success
Starbaby has been seeing a physiotherapist at the children's hospital every 3-4 weeks since he was just a few weeks old. When he was born he was completely floppy, and although over his week in NICU he regained some strength, he still has very weak muscles in some areas of his body (particularly his arms and fingers), both wrists are 'extended' (bent backwards) and he has muscle imbalances in a lot of areas, where one of the muscle pairs is strong and one weak. His neck has been particularly affected, which resulted in his head being pulled right back when he was upright.
We've had exercises to do with his arms, hands, fingers and neck, and were also asked to buy a selection of sensory toys to touch on his arms and hands to try to encourage movement.
Starbaby was 9 weeks old before he lifted his left arm when lying down, but a week later he was already clutching his hands together sometimes. A few weeks after that he started getting his right hand to his mouth occasionally, and these days (17 weeks) it's often in his mouth, sometimes bringing the left hand with it.
2 weeks ago his neck was still extending backwards a lot, so our lovely physio showed me an exercise to do with him to encourage the muscles to be more balanced. We've been doing it many times every day... and the last couple of days it's become very clear that his neck has improved a huge amount. It's not far off normal now - amazing progress!
Starbaby also started rolling over 3 weeks ago and is now quite a pro at it. I am amazed, really... he has such 'funny muscles' that I didn't expect him to be happily rolling at just 3 months old... I am so, incredibly proud. Milestones mean so much more when they've overcome difficulties to get there. Although his rolling is resulting in fairly disrupted nights, every time he does it, I smile.
His fingers are still fairly weak, the left hand more so than the right, but his right hand is becoming better at gently grasping things... such progress from the little baby whose fingers were completely floppy and didn't move at all.
He has come so far in the nearly-16 weeks since he came home from NICU, and I have no doubt that he is going to continue to amaze us. My wonderful boy.
We've had exercises to do with his arms, hands, fingers and neck, and were also asked to buy a selection of sensory toys to touch on his arms and hands to try to encourage movement.
Starbaby was 9 weeks old before he lifted his left arm when lying down, but a week later he was already clutching his hands together sometimes. A few weeks after that he started getting his right hand to his mouth occasionally, and these days (17 weeks) it's often in his mouth, sometimes bringing the left hand with it.
2 weeks ago his neck was still extending backwards a lot, so our lovely physio showed me an exercise to do with him to encourage the muscles to be more balanced. We've been doing it many times every day... and the last couple of days it's become very clear that his neck has improved a huge amount. It's not far off normal now - amazing progress!
Starbaby also started rolling over 3 weeks ago and is now quite a pro at it. I am amazed, really... he has such 'funny muscles' that I didn't expect him to be happily rolling at just 3 months old... I am so, incredibly proud. Milestones mean so much more when they've overcome difficulties to get there. Although his rolling is resulting in fairly disrupted nights, every time he does it, I smile.
His fingers are still fairly weak, the left hand more so than the right, but his right hand is becoming better at gently grasping things... such progress from the little baby whose fingers were completely floppy and didn't move at all.
He has come so far in the nearly-16 weeks since he came home from NICU, and I have no doubt that he is going to continue to amaze us. My wonderful boy.
Cast #11 is on
The end is... well, not nigh, but feeling like it's getting slightly nearer.
Today Starbaby had his 11th cast put on. Due to the heat of the last week his leg looked quite sore once his cast was removed... last time that happened, he ended up having a week our of casts and his foot regressed quite a bit, so I'm desperately hoping it's OK at the end of the next week. Today's cast is noticeably thicker than any of his previous ones... just what we want during a heatwave!
Starbaby has been ready for his tenotomy for a couple of weeks, but the consultant is away on holiday for three weeks - so frustrating! If it weren't for his setback and the consultant being away, he would probably have had 6 or 7 casts before his tenotomy, but it looks like he'll be tenotomy-ing next week, after 11 casts and 12 weeks of treatment.
Boots and bars are apparently taking three weeks to arrive at the hospital at the moment, so it's probably going to be 4 weeks today that Starbaby goes into BnB. Although I know that stage will bring its own challenges, I am desperately looking forward to not having to go to the hospital every week and being able to see Starbaby's feet for an hour every single day... and BATHS!
No change from last week, but hey, here's a photo (from a new angle this time)!
His foot is still a 1, and just needs its tenotomy to let the heel come down further and it will be officially corrected.
His foot is still a 1, and just needs its tenotomy to let the heel come down further and it will be officially corrected.
Wednesday, 10 July 2013
Hand Surgeon appointment
Last week we had an appointment with a hand surgeon, having been referred by Starbaby's paediatrician.
She was really lovely, and carefully examined his hands and arms. Unfortunately she didn't have any clear answers for us - we were really hoping the appointment might be the start of getting to the bottom of the things Starbaby is dealing with other than talipes. She thinks (which I felt already) that he has muscle imbalances across as a lot of his body - some muscles overly strong, and some very weak. It's particularly apparent in his hands, arms and neck. Unfortunately there's no clear answer as to why it's the case, and therefore we have no idea of the long term prognosis. She talked of MRIs when he's a bit older, seeing a geneticist... but while he's young, there's going to be a lot more 'wait and see'.
She has asked for our next appointment to be with the specialist in congenital (from birth) hand issues, and he may have some more words of wisdom. Fingers crossed. It's hard living with these 'unknowns' because my mind just thinks of the worst case scenarios.
She was really lovely, and carefully examined his hands and arms. Unfortunately she didn't have any clear answers for us - we were really hoping the appointment might be the start of getting to the bottom of the things Starbaby is dealing with other than talipes. She thinks (which I felt already) that he has muscle imbalances across as a lot of his body - some muscles overly strong, and some very weak. It's particularly apparent in his hands, arms and neck. Unfortunately there's no clear answer as to why it's the case, and therefore we have no idea of the long term prognosis. She talked of MRIs when he's a bit older, seeing a geneticist... but while he's young, there's going to be a lot more 'wait and see'.
She has asked for our next appointment to be with the specialist in congenital (from birth) hand issues, and he may have some more words of wisdom. Fingers crossed. It's hard living with these 'unknowns' because my mind just thinks of the worst case scenarios.
Tuesday, 9 July 2013
Into Week 11
Cast #10 is on (Starbaby's 11th week of treatment).
His foot hadn't really changed from last week... the heel probably isn't going to come down any more until his tenotomy, but frustratingly the consultant is away for three weeks so the earliest that will be done is a fortnight. This is going on soooooo long! I keep telling myself it will be worth it in the end. One day I will be showing Starbaby this blog and it will all be a dim and distant memory.
It looks like he'll have 4 or 5 more weeks in casts before Boots and Bars in mid August, at around 5 months old.
It's hard seeing other babies, both in person at our hospital and online, having their feet corrected in half the number of casts Starbaby has had, but I think his foot is a fairly 'extreme' club foot, so it stands to reason it's going to take longer than some. It's hard to think of him still being in full time BnB at 8 or 9 months old... but I guess we'll all get used to it, just like we have done casts.
We weight Starbaby today and he was 12lb on the nose! That's over double his dinky birth weight of 5lb 11oz - wow!
Now for this week's photos...
His foot hadn't really changed from last week... the heel probably isn't going to come down any more until his tenotomy, but frustratingly the consultant is away for three weeks so the earliest that will be done is a fortnight. This is going on soooooo long! I keep telling myself it will be worth it in the end. One day I will be showing Starbaby this blog and it will all be a dim and distant memory.
It looks like he'll have 4 or 5 more weeks in casts before Boots and Bars in mid August, at around 5 months old.
It's hard seeing other babies, both in person at our hospital and online, having their feet corrected in half the number of casts Starbaby has had, but I think his foot is a fairly 'extreme' club foot, so it stands to reason it's going to take longer than some. It's hard to think of him still being in full time BnB at 8 or 9 months old... but I guess we'll all get used to it, just like we have done casts.
We weight Starbaby today and he was 12lb on the nose! That's over double his dinky birth weight of 5lb 11oz - wow!
Now for this week's photos...
Starbaby's foot after 9 casts - scoring a 1 again.
Our gorgeous little boy.
Big Sis enjoying a biscuit from her favourite playworker at the talipes clinic.
Yummy foot... heel still needs to drop more, but otherwise... getting closer!
Tuesday, 2 July 2013
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...
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.
Monday, 1 July 2013
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!
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