Sitting

Last Monday, 23rd September, Starbaby started sitting up on his own! It was quite a sudden thing, as it was with Big Sis, and he has very quickly gone from looking like independent sitting was a good way off, to being incredibly sturdy.

I am so, so, SO incredibly proud of him. Through physio exercises and the most determined personality ever he has overcome so much in the 6 months he has been in the world. Not long ago he was so, so floppy, yet look at him now!

Sitting has opened up the world for him more... he's suddenly got really into reaching/grabbing and is constantly looking around for something else to grab at. His left hand and arm are still very weak, although they are improving, and his right hand is doing really well. He can grasp things when they're put in his hand, or held in front of him, and hold on to them for a good while (especially if it's food... that reminds me, I must write about our quasiBLW adventures soon)! He has even managed to pick a few things up from his high chair tray, although that's still fairly challenging. However, seeing how determinedly he has overcome all sorts of challenges in his life, I have little doubt that he is going to continue to amaze me.

Here's my little sitting boy, last week, at 6 months and a few days.

Castless - again!

On Tuesday we headed to hospital, 2 hours away, to have Starbaby's slipped cast changed... we were seen really quickly as our fab consultant and physio were popping in especially in between other commitments.

Starbaby's cast was removed by yet another lovely casting nurse (what a stark contrast to our old hospital) and then our consultant had a good look at his foot - she said it had lost some correction due to the slip, but that's not a surprise, and overall now it's settled I can see it's still in the position it seems to have stayed in over the past few weeks. It's proving a tricky one, this foot!

They started putting on his next cast, but within a few minutes I looked up from distracting Starbaby with lots of funny noises and realised they were taking the cast off. Our consultant said that she didn't feel confident that this cast wouldn't slip as well (the last 4 casts have all had some shiftage or a full on slip) and didn't want us and Starbaby to have to deal with the stress of that.

Starbaby has neurological talipes which is why his treatment journey has been rocky and why his casts keep slipping. It's frustrating, but at the same time I'm feeling quite used to it now. This is our new normal!

So the current plan is for Starbaby to be cast-free for the next  few weeks, and then he'll be having a tenotomy (operation to cut his achilles tendon) under general anaesthetic. Hopefully the result of that will be to bring his heel down and allow his foot to be manipulated into a position which will help the next cast stay put in the right position so his foot can finally get closer to being corrected.

Starbaby got his first cast nearly 5 months ago... we were expecting 2 months in casts, 3 months in BnBs full time and him to be free of them in the daytime around now. But this journey has ended up being trickier than we expected... I'm frustrated with our local hospital for many reasons... but I'm now feeling more accepting that this is the journey we're on, it's complicated, but we are now in the very best hands.

Another Bump in the Road

Starbaby's 16th cast appears to have started to slip again. I'm getting pretty used to casts slipping now, so am not feeling too down about this latest slip. Hey ho. Starbaby is on a long and bumpy journey but it's becoming normal to us now.

After emailing back and forth which his fab consultant and physio, they've asked us to bring him up tomorrow to have a new cast put on. Thankfully B's work are fantastic and his manager has agreed he can swap his unpaid leave from Wednesday to tomorrow so we can all go up together. It's a 4 hour round trip, Big Sis and Starbaby both have bad coughs, and Starbaby still hates the car if the journey lasts longer than 10 minutes and he's awake, so it's really not a trip I feel I could cope with on my own.

Looking on the bright side, it means Starbaby and I get a day of 1:1 time on Wednesday instead of spending Big Sis' nursery day going to the hospital.

Tomorrow...

... Starbaby will get cast #15 on. Fingers crossed for no slippage this time! Cast-slips are quite common with his type of club foot, so I know there's a good chance it will happen again at some point... but it would be lovely if we had a week of things going smoothly on that front.

We've sent in Starbaby's DLA application... although I feel he is deserving of it (he needs a lot more care than an 'average' 6 month old) I'm not overly hopeful as I know it can be tough to prove extra care needs at his age. But we'll appeal if he's turned down. We're spending so much on hospital parking, travel, unpaid leave from work etc that any extra ££ would make such a difference to us.

Starbaby, Big Sis and I had a lovely bath this evening... we've had one together every day bar one since his cast slipped and I'm so going to miss them once he's back in casts tomorrow. Hopefully it won't be for too many weeks, though...

Paediatrician Appointment

Today we saw Starbaby's hospital paediatrician.

Going to write quickly, just so it's all recorded, but I don't really want to dwell. Oh how I envy people who don't spent so much time at the hospital with their baby.

She asked me lots of questions about how he's changed over the 4.5 months since she last saw him, then examined him thoroughly. She confirmed he has hypotonia, most seriously affecting his arms, hands and legs and feet. His neck muscles have noticeably improved through the physio I've been doing with him. When she pulled him up by his arms from lying and instead of his head falling back, as it did until not long ago, it stayed 'solid' on his shoulders! Every time I pick him up or lie him down I incorporate an exercise the physio asked me to do... and it's made such a difference. Proud mama! His arms have improved a long way from where he started (little movement in his right, almost none in his right), again due to intensive physio from me, but are still very weak, particularly his left. It was hard to be asked "Can be do x? Can he do y?" and have to answer 'no' to  almost all of them, and as she examined him she mentioned several things he can't do (i.e. push up at all with his arms, push against pressure with his arms). 

Hypnotonia is just a symptom (muscle weakness/low muscle tone) so the next step is to try to get a diagnosis as to what condition it a symptom of.

She thinks he has a genetic neuromuscular disorder... that's what, in my layperson but googled-the-hell-out-of-because-he's-my-precious-boy opinion, I feel too. But even though I think it too, hearing it said by a doctor, and seeing how seriously she talked about various referrals was really quite upsetting. It made it feel real.

I guess I was hoping I might share my thoughts and she would say she didn't think he had a serious issue, but would make a referral to investigations to be sure. Instead, she was talking referrals before I even mentioned it myself.

Oh, my wonderful boy. You don't deserve this.

Next steps... MRI scan on his brain, blood tests, muscle biopsies and seeing a neurologist then once their investigations come back, a geneticist.

There are no available neurologist appointments at our hospital until February, but we may be able to see them at the hospital just very slightly further away sooner. I hope so. I know it may take a while, I know there's a chance we may not get a diagnosis... but if it's possible to know what Starbaby is dealing with, I want to know. I want to get an idea of what the future may hold for our wonderful boy and our family.

Yet Another Setback

.. but hey, we're getting pretty used to them now.

Starbaby went down with the sick bug on Sunday. My poor baby boy did the most impressive repeat projectile vomiting I have ever seen... all over me! We jumped straight in the bath as we were both covered... maybe that's why the Universe felt he needed to have this week cast-free?

We had hoped Daddy and I had escaped... but I spent all of last night throwing up, and Daddy joined in today. We really are the house of sick! I feel utterly rotten, as does Daddy, but thankfully the children are better now. I'm trying to keep drinking as obviously Starbaby is taking a lot of my fluids through feeding, and I've kept an oatcake and a slice of toast down today.

It means that we're not able to go to Starbaby's appointment tomorrow, as we'll still be infectious. So frustrating to have another setback... he will be 6 months old next week, has been on the talipes treatment rollwecoaster since he was 5 weeks old, and his foot still looks little different to how it did  after 3 or 4 casts. But I know this is going to be a long road... his club foot isn't the 'easily corrected' type so he's going to need a lot of treatment over the coming months, years and problem decade. And that's not including whatever will be going on as a result of his wider neuromuscular condition.

We're about to apply for Disability Living Allowance for Starbaby... his range of issues mean he needs a lot of extra care/support compared to other babies his age so we feel it's worth a shot. I'm not holding my breath as I know many people get turned down... but anything would be helpful as we're spending out so much on hospital visits and things he needs to help him at home. I have spent many hours working on the form, and now that's done I need to move onto putting together some further/supporting information before it's sent off at the weekend.

Well, that didn't work!

Today we should have been off to NewHospital to get a new cast put on Starbaby's slippy right leg... but Big Sis went down with a nasty sick bug overnight and spent all night throwing up so that scuppered that plan.

I considered going on my own with Starbaby but it's 4 hour round trip and he really struggled on car journeys, plus I was worried one or both of us would get sick while away from home.

I exchanged emails with our physio and the plan is to stay cast free too our normal appointment next Wednesday. Another setback... but we're getting pretty used to them by now!

What a few days

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!