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...!

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...

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.

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!

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... 

Week 14 of treatment

And so the groundhog-day-feeling continues.

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...

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)!

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.