The Goose and Carrot Pub Thread

[roaringdragon]

Everyone is welcome, and the thread disappears after 90 days.

Thank you for the last thread @lougle. I hope the doctor was helpful and DD2 isn’t feeling too rubbish this morning.

DS1 has used the last of his EOTAS hours today. There will be at least a few weeks before the EHCP is finalised and funding restarts. He will hopefully have his operation during that time, but it is still going to feel like a long time without that provision.

The DCs have been banned from TV for play fighting. DD is making a felt elf and DS is strumming on his guitar to some folk music on the speaker (he can't play notes or chords just open strings).

Ds ate quite a lot of a beef burger tonight. I kept the rest of the meal the same and swapped it for the now solidly accepted steak It’s triumph for us. He’s an incredible young man. Despite so many trials he just pulls himself forward.
I am going to go ahead with the learning how to do housework idea. I will assemble “kit” first and then we will push through till he can do it himself. He will feel better and I will feel better and who knows perhaps next year we will be a pristine household. We have two kittens coming in a couple of weeks. I’m hoping he might like to feed them.

@Zzzzzs bean transfusions are the best. Plastic pipe with a funnel taped to it. Hooray for burger, too.

I did get out. DD1 was much brighter this morning so I think it was exhaustion panic.

DD1 is home for the week. I did her roast chicken (or rather bread sauce and the chicken is a mere accompaniment) last night. She ate everything on her plate, whereas normally it’s an uphill battle to get her to eat the veg and potatoes! (I’ve been told, she needs carbs for energy to the next meal with epilepsy; and she suffers from constipation, exacerbated by the iron tablets)

I make up photo books for her of the family, holidays, etc on the internet to be printed and delivered to her, every so often. She asked me to do her another one on herself last night. I’ll have to trawl through DH’s phone for good photos of her in the last year….as well as my own! It’s about balancing the numerous photos with the cost of the printed book!

Oooo printed books are a fabulous idea. Ds would be really into that. Bread sauce and constipation seem a rather risky combo! Ds has a spoon of califig mid afternoon and lots of fruit/veg/water/exercise as his meds do the same and constipation is a big seizure trigger here. We tend to be brilliant at it till we get complacent.

I did the sellotaped pipe bag to bag….there was a terrible “pop off”. Luckily we have hard flooring so time consuming but clean again.

It’s raining here and all the offcuts are outside and I need to build a door (and fix the aga) before kittens arrive. Sadly ds needs my chauffeur and handmaid services all day.

@Lougle I’m glad you managed to meet your friend.

@Zzzzzs Hurrah for another food breakthrough. I love reading about your DS’s food successes. @LathkillDale well done on DD1’s eating too.

Thanks @Violasilkie. Keep plugging away at the PIP. You’re getting there.

If I told her, she couldn’t have bread sauce (one of her absolute favourite foods), she would be likely to go into orbit! “Horrible git” wouldn’t cover it!

She’s on two laxatives, to reduce the ammonia in her blood. Even so, we need to keep an eye on her all the time.

@LathkillDale bread is a real problem for ds. He loves toast. It makes his stomach inflate and slows everything down but he does like what he likes and I’m not the food police.

I'm in terrible trouble for insisting we bring his coat with us in the car (it’s freezing and wet here and he was in tshirt and tracksuit bottoms). He is miserable about it and feels bullied. I’m miserable about it because I don’t want him to be cold.

Great you got out @Lougle Hope you had a nice time.

Kittens sound lovely @Zzzzzs

Thanks @roaringdragon

We have had a busy day so far. Woke up at 2am checked bath and said now available. Check again at 9am and says it's being delivered today but no details. Phone the people we are buying it from and they contact manufacturer and confirm it's tomorrow not today. Then delivery company confirms tomorrow. Then 9.15am shed company phones with a cladding issue but have resolved that, arrival date may be put back a bit or may stay same, either is fine. So then had to do work in DSs bathroom with DH for 4 hours but got all of it cleaned, DSs washing done, DSs rubbish cleared, adhesive off, kitchen and laundry room cleaned, are fixing the dishwasher, bathroom old worktop removed and supports and rawlplugs down. Now having lunch at 4.45pm. Discovered DS has my coins from the island I worked on which we offered to him but first he would not take. Trying to arrange dates for plumber and electrician to visit and in touch with both. Need to collect orders today.

@LathkillDale lovely to have a nice meal for DD.

@Zzzzzs could you get a 'car coat' from Vinted - something you can just have in the car for 'if the weather gets bad'?

@Violasilkie well done for continued progress.

DD3 is still struggling. The head of school emailed SEN to give them the heads up on our ideas, and got a response to say that her Caseworker has died. Incredibly sad and a bit of a shock!

DD1 had her first appointment with the new psychiatrist today. He's reducing her meds because he says she's over medicated. She was quite tearful and was able to ask what he would give her instead because she doesn't want to hurt herself, and would she be safe. He was very kind and reassured her that we were looking after her.

DD2 is back at the hospital. I've been ignoring her slightly raised temperature but today it was 38.4°c after paracetamol. They've taken blood and we're hoping that it will be ok, then we can go home. If not, she'll be kept in for IV abx again. We just need to keep her going for 4/5 more days until her op on Monday.

It lives in the car usually @Lougle it’s just we’re not in winter mode yet. The transition to “winter” rules is hard for ds because he matches clothes to activities.

Sorry DD2 is back at hospital @Lougle hope everything can be sorted for Monday.

@Zzzzzs My DS won't wear a coat but he'll wear the thick fleece / sherpa hooded jackets which are quite warm and wears those.

Oh that is a shock, @Lougle. I’m sorry DD2 (and therefore you!) are back in hospital. I hope bloods are OK and you can keep DD2 going for a few more days. Fingers crossed the new psychiatrist is an improvement on the last. Can’t be much worse! I hope the support the school promised DD3 has materialised.

@LathkillDale are the high ammonia levels the results of DD1’s genetic condition or because of the AEDs? Or both? Feel free to ignore BTW.

@Lougle I missed hospital again, I’m sorry I missed that in bedtime dramatics. You are amazing to still be upright. Roll on Monday.

Oh thinking of you @Lougle and your DD2.
DS had a tonic clonic this morning and awful headache all day so stayed off school. Making arrangements to meet up with his friend next week though and probably go to the waterpark.
DD has been stealing again, including an apparent competition with her friend to see who could steal the most glue sticks from school! I suspect friend has been egging her on.
She seemed almost relieved when I told her she wouldn't be going anywhere over half term. Won't do her any harm to have a really quiet week and no treats. I may have to take her to sit and read in my office for a morning but she'll survive. Also there are free things going on, I've just said no spending money on her.

@Zzzzzs oh that is hard! DD1 would never wear layers as a young child and she used to sleep naked except for a nappy, with a fan on even in winter. Funnily, it was when she had to have a 24 hour ECG and the wires freaked her out that she started accepting pyjamas at bed time so that they covered them.

@drspouse sorry that DS has had another seizure. DD's stealing sounds tricky. Is it thrill seeking?

@roaringdragon he does seem a very good psychiatrist. He's respectful and methodical, and very clear that medication is only 30% of the answer to psychiatry. He said that he wants to make changes slowly and that winter is the worst time to make medication changes because everyone feels rubbish in winter.

We're home. Bloods were reassuring and we can just keep on keeping on until Monday unless she gets uncontrollable pain or fevers with jaundice.

What I really liked about the psychiatrist is that he turned to DD1 and said "I've been talking about you but now I want to know what you think." DD1 was struggling to prioritise so I said "What is your number 1 question?" She asked her question, then he took my lead and said "The answer to your number 1 question is x. What is your number 2 question?" It worked really well.

lougle glad your home and I hope Dd2 reaches Monday without incident.
Dd1's psychiatrist sounds good and hopefully will be really helpful.

Drspouse sorry to hear about another seizure and more stealing. Both so difficult to deal with in different ways.

Ds has had two days off work this week with autistic shut down. I don't think there is anything particular wrong or worrying him - it is just the effect of constantly doing a just little too much more than is comfortable.

@Lougle home and hanging on sounds good. Hospitals are very exhausting places so I’d always rather be tucked up at home. New Psych sounds sensible. I know what he means about winter meds changes but u do think the heat and expectation of doing things in the summer have their own downside.

I have a day off booked kittens proofing to focus on. I would rather hole up by the fire.

@roaringdragon I think it’s mainly due to the metabolic disorder. I believe it is one of the signs of a metabolic disorder. We knew she had high ammonia, before it was diagnosed. Her consultant neuro psychiatrist had an interest in metabolic disorders, and said he believed she had one. He wrote to GOSH to ask what tests they had done. Unfortunately, they wrote back that the epilepsy was due to the congenital brain abnormality. He didn’t pursue it, after that. He was right!

@Zzzzzs DD1 always shows an increase in seizures in the heat in the summer. It’s a pity, where she lives doesn’t have air conditioning. I am thinking about getting some for her downstairs bedroom and the lounge for next summer.

@NoHaudinMaWheest I’m sorry DS is burnt out. I hope his days off allow him to decompress.

@drspouse I’m sorry DS had a seizure yesterday.

@Lougle glad you are home. It is a relief to read the psychiatrist is a significant improvement.

@LathkillDale that’s interesting. Annoying that it was dismissed to begin with.

@roaringdragon glad the antibiotics are doing their job.

@LathkillDale have a great time with DD1. I received a photo book documenting a 30 year friendship and I still look at it. They are quite expensive though.

@Zzzzzs sorry your cat didn’t reappear. Have fun with the kittens.

@Lougle hope you enjoyed the cinema. Fingers crossed for a quiet weekend for DD2 and hope the sweet spot of meds and person is found for DD1 - new psych sounds fab.

@Violasilkie ☕️ 🍰 for the rest of the form.

@NoHaudinMaWheest hope DS gets his energy back. Has he got any annual leave coming soon?

@JumpersFluffy good luck for exams I think they are quite soon?

@drspouse stealing is a tricky one to tackle. Your descriptions of evenings with less screens are reminding me to do different things.

DD’s law course is really wordy and boring to listen to this term. I preferred last year when she was talking about cases instead of constitution.

So we are in the hospital club too, DS wasn't well in the night again (though not a tonic clonic) but we couldn't wake him today and had to call an ambulance, he's now in A&E and they are going to give antibiotics (I assume IV), and apparently it's my turn to stay over.

@PurringTiger she hasn’t been found on the roads yet so there is still hope. We get rodent problems without enough working cats, so kittens were due next year anyway as my oldest girl isn’t hunting anymore (19!)

Hope your DS is getting the treatment he needs @drspouse and sorry to hear you are in hospital and hope they treat you well too.

Thanks @PurringTiger Good your DD is progressing with the course, hope it gets more interesting.

@NoHaudinMaWheest Hope your DS is better after a good rest.

Glad you got home @Lougle Hope everything continues OK to Monday.

Jacuzzi bath arrived and DH and I brought it into the house which was somewhat of an achievement with an old house and we brought it round the back and in. Had to unpackage and unscrew parts and a lot of angling to get in but its here. Now need to get plumber and electrician to agree to exact dates and hoping they will be soon. Then I cleaned the floors downstairs and did clearing leaves in the garden and then had a nice bath but not in the jacuzzi one. DH has been cutting up the old worktop and we have a council collection for an old hoover and sacks tomorrow. We have to finish preparing the walls in downstairs bathroom but that should just be one more day.