On with the splint

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

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

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

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

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

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

Crawling in Boots and Bar

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

Speaking of crawling, take look at this!

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

Into Boots and Bar

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

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

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

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

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

Starbaby's Op

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

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

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

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

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

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

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