Sunday, April 24, 2016


This week's picture speaks for itself.

a baby boy with an enormous toothless grin

Jamie is generally speaking quite a happy child. We're getting a lot of these enormous gummy grins at the moment and we're loving each and every one.

Sunday, April 17, 2016

On Practicalities

In the comments a couple of weeks ago was the following query:

"I wondered if sometime you might be able to write something about some of the practical issues around looking after a baby when you're disabled? My wife and I are considering having children soon, but I'm a bit concerned about how I will actually manage a baby with my level of fatigue (I have the same diagnosis as you), and with a wheelchair (how do you even push a pram with a wheelchair?!)."

I really want to answer this, but where to even begin...

Specific questions are easier and the query about pushing a pram with a wheelchair is simple enough to answer. I don't.

Every so often someone will send me a link to a product (which invariably turns out to not be a commercially available product, but a student's one-off engineering project or similar where they're trying to boost their grade on the Helping Those Less Fortunate ticket) that's a sort of pushchair that clamps onto a wheelchair. It's an interesting idea, but I've yet to see one that looks practical for any kind of day to day use.

If we're somewhere like my GP's surgery, where there's parking directly outside, seats inside, and not a lot of walking required, then I walk leaning on the pushchair, but most of the time when I'm out and about with Jamie he's in a sling on my front.

Jamie in sling

To find out about slings, I googled for my local sling library. The lady who ran it was very welcoming, and we had a very useful consultation session trying on different kinds of sling with a doll, and then with Jamie himself. We considered my ability to put the sling on myself, as well as what it was like once it was on. Then I was able to borrow my preferred type of sling for a fortnight to see how it worked for me "in the real world".

The answer is, it works very well. The time it takes me to sit in the back of the car, fish Jamie out of his car seat, shuffle him into the sling, and be ready to go, is about the same time as it takes Steve or my PA to pull out the ramps and get my powerchair out of the boot and round to the side of the car.

He likes being in the sling, especially while we're moving, and often falls asleep in it. Staff at my local Sainsburys have been known to dash over to say hello to Awake Jamie when we've only just entered the store, because he's almost always dozed off by the time we reach the checkouts.

It was also quite useful at home while Jamie was smaller and sleepier, because it meant he could snooze while upright (reflux issues meant he wasn't always a fan of lying down, especially straight after a feed) and I could use the computer, which among other things allowed me to keep on top of the admin of my Direct Payments.

Drawbacks: reduced upper body mobility is the biggie. I still have use of my arms but not as much reach, and twisting around in the chair to get at stuff in the backpack is right out.

Eating and drinking with a baby strapped to your front can be tricky at best and potentially dangerous at worst. My experience so far is that while the baby is pre-high-chair, you either need to have a pram/pushchair to put him in, or you need to be with someone who's happy to take turns for who gets to eat vs who holds the baby.

It can get a bit heavy after a while. It's very inconvenient if you've gone out intending to try clothes on. And personally, I haven't felt comfortable to try going to the loo while wearing him. So if I'm going to be out for a long time, or as above if I'm planning to try on clothes or stop for food, then I ask my PA to bring the pushchair (which is also useful for stashing shopping). It's really important to me, though, that as a rule we don't have a PA pushing Jamie while Mummy trundles off ahead or behind.

Hopefully this helps someone... more questions welcomed, although I can't guarantee they'll be answered!

Saturday, April 16, 2016


Last week's tooth seems to have subsided - apparently this is a Thing and normal. So, Jamie had to cast about for a new milestone:

baby in blue trousers and a yellow top, lying on his front on a brightly coloured play mat

It might not look like much, but if you will observe the space devoid of toys just next to the boy... because this was the week he got the hang of rolling from his back to his front!

He'd had rolling from his front to his back sorted out for quite some time, but from his back, all he could reliably do was get onto his side and then become frustrated about his own arms getting in the way. But now, he's rolling about quite contentedly. Which means we've got that play mat opened up just in time!

Saturday, April 09, 2016


On time this week!

Here's the picture...

a smiling baby lying on his front, head up, wearing a green top and holding a cloth book

It's remarkable that he's smiling so much, because this is the week that we saw a little white dot emerging.

a strangely angled closeup of a baby's face. An adult thumb gently pulls down the lower lip and a small white dot is visible on the baby's lower gums

Forgive the funny angle, it's more difficult than you might think to take a picture of a very tiny white dot inside the mouth of a baby who's very interested in holding all and any tech that gets near him! We're pretty certain that it'll develop into a full-blown tooth. At the moment it's just a hard, sharp little corner. I hope it stops hurting him quite so much soon.

Thursday, April 07, 2016


Well, from sitting in the high chair, we've moved along to our first tastes of food.

This is sweet potato.

baby in a high chair, smiling and covered in sweet potato mush

Food is apparently a hit for Jamie, although more as an art material than as nourishment at this stage. He can and does propel his own spoon to his mouth, but while most of the puree makes it to his mouth it doesn't all stay there. Scooping food onto a spoon is also currently beyond his powers but we don't mind helping with that. Finger food, such as slightly overcooked broccoli, is regarded with suspicion even when Mummy is eating it too, and has thus far been rejected.