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...
Monday, 29 July 2013
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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