Our little Lion cub had a stunning appointment here at the RVI this morning. As we expected, his consultant, Mr A, is absolutely delighted with Leo’s weight gain, percentiles, development and general awesomeness. There are no residual concerns and the only reason a follow-up appointment has been made in six months’ time is because it’s the first time Mr A has seen him fully-fit. I am filling up as I type those marvellous words, an answer to many desperate prayers and more than I dared to dream even four months ago.
I wasn’t at the appointment but I did see my favourite boys afterwards 😍. The little boss lady will be bringing my folks here shortly at around 2pm so it’s all go.
The Morning Report
I have no biopsy or brain trace results to pass on. Nonetheless, I do have real progress to describe:
- I haven’t had to fight my inner-Nazi since 8am yesterday. This is unreservedly positive and the doctors are delighted, as am I. A very slight regret is that I had been hoping to shoot a video of the next event to make good (finally) on the “Miss YouTube” nickname given to me by a rather wonderful client back in 2007. You win some, you lose some.
- I can move myself around the bed a lot more (relatively speaking) and now only need one kind assistant, not two, to help me up, into a seat and/or into the bathroom. The extent of my lower leg movement has improved further overnight, and I can lift my foot up from the bed a few inches.
- I’ve been allowed temporary reprieve from the compression stockings this morning, which has relieved a tickle or two.
- I am wearing proper clothes for the first time since Friday night, having used my relative freedom this morning to wash, dry, moisturise and dress myself (with only a little bit of support at the end to put my trousers on without falling over). I was cream-crackered after my exciting exertions but it was worth it. With a happy return to separate day- and night-clothes, I’ve asked that more clothes be brought in from my wardrobe.
- Given my decreased seizure activity and increased mobility, the doctors were keen to remove my catheter today, not least because it encourages and accelerates even more independent movement. The nurses took advantage of me accidentally knocking over and cracking the plumbing at about 10am. The call of nature is once again my responsibility, which is a surprisingly happy burden to bear!
- I will be staying in hospital over the weekend at least. The doctors are really pleased with my progress (as am I) but they see very little point in sending me home with such limited movement when I’ve got all the aids and aides I need in here. As much as I miss my family, it has to be the right decision.
The steroid hunger pangs are not as frequent as they were a couple of days ago, which is presumably because the dose is going down steadily every few days. That said, the pangs can still be extreme so I’m not out of the greedy woods yet.
After snacking overnight at around 2am, I lasted until breakfast at 8am. I had a bowl of Bran Flakes and congratulated myself on my non-excessive needs. However, half an hour later, the Steroid Baby screamed. I therefore promptly ate two Müller Rices (having not had one for years, they’ve been a revelation this week), almost a whole packet of baked cheddar crackers, a fair few grapes and a few tangfastics for good measure.
Our dear, late friend who first gave me the affectionate moniker “Rain Man” would, I think, be pleased that hospital has given me the comfort of routine. Fittingly, I have had fish today for the third Friday lunchtime in four.
The doctors and nurses have periodically referred to my “focal” seizures. It was not until Google helped me identify my red-and-white anti-seizure tablets (phenytoin, as I now know) that I came across some seizure terms and felt cheated by a non-rhyming label. “Tonic-Clonic” is a thing. It’s just not my thing. I might start a petition to change my type to “Local Focal” (or any better suggestions you can come up with).