General Chat

I'm back again.................

Had to see to my washing :-(

Yes - I can understand that even a break of a few hours would be so good - lets hope it works.

I will be missing for a short while - I haven't fallen asleep :-D

Just waking a few times would do, my daughter has to feed her a couple of times in any case

I have seen similar situations, and have seen how hard it is on the parents. They are expected to just get on with it.
Sometimes there is respite for the parents of children with serious conditions, but usually not until they are older.
That is no help now, and they have my sympathy in trying to cope with it.

It would be wonderful if they could just get Esme to sleep through the night.

It is really impacting on my daughters health,she is so tired and gets one infection after another, she just cant go on like that and there is no respite help for them, they are just expected to get on with it

It would be so wrong to put such a young child on an addictive sedative. A finely tuned anaesthetic would be much better.

I suppose the dose will have to be tweaked initially until they get it right.

Great shame that any of it is necessary, but her present sleeping pattern must impact on the whole family, so something has to be done for all their sakes.

I suppose it is just juniors who would have to be called and there might not be time for that. I am sure she will be fine though as it is used a lot of the time in America, better than the sedatives which they were suggesting for use here. They are addictive and would make her dopey during the day

What kind of hospital doesn't have doctors on duty at night? unless they have to be specialist paediatric doctors.

The doctors in Shrewsbury were called to see to me several times during the night.

They were willing to stay in overnight, but they don't have doctors on duty then

I hope it works for them. Shame it can't be tested at night though, but I understand how impracticle that is unless Esme and her mum were to stay in overnight.

They must be exhausted with her waking up all through the night.

So do I :-D

She has had the all clear to be given the low dose anaesthetic to try to make her sleep. They have to go to the hospital on Friday morning to try it out. It would make more sense to try it overnight, but there are no doctors on duty then

I hope it works as it does for other Costello kids, they can't go on with her waking up twenty times a night

It must be so encouraging for everyone to see Esme interacting and recognising signs, especially through Skype.
The more she understands the happier she will be, and the easier it will be for her mum.
I just want to give her a big hug :-D........a cwtch. :-D

Yes they have messed my script up before. We are "encouraged" to use the Health Centre dispensary rather than the chemist.
More money in it for them I expect. :-(

I could ask Sue to get me some things, though can survive without.

Had a nice chat with Esme earlier on Face time. She is always pleased to see us , she smiles and waves. She was sitting in her high chair being fed while the others had dinner. She wasn't eating of course it was all through her tube. She throws all her toys off the tray onto the floor, her mum gave her a hairbrush, so she picked it up and reached out to brush her mums hair. Esme doesn't have much hair,so she must know what to do by watching Eve have her hair brushed.

Eventually she threw it on the floor, so I signed to her and asked her where the hair brush was. I was really pleased because she immediately brought both of her hands up and was making a good attempt at the "where" sign. She then looked for it on the floor

Her mum gave her a wet wipe and said "Esme clean your tray" she started wiping the tray. It is so good to see her interacting and signing. She can do several signs now

I am more than pleased that the ulcer is healing. I was worried about things getting worse and my not being able to go to London, although that is a while away yet.

The hotel is booked, although the only rooms with wheelchair access are doubles, but that's fine.

I am really pleased that the ulcer is healing up, hopefully you can get some more sleep now

Isn't that the second time in a row they have done the same thing to your prescription?

Next time, you need to ring them up and remind them where it has to go, expecting you to sort their mess out is just not on.

Maybe Sue can pick up some shopping for you while she is out

I did sleep a little longer. Having got to sleep around 3am.
The bed contraption helped, in relieving the weight of the bed covers off my ankle.
I still think it is the position of the bed. I didn't have a problem when downstairs.
We will see what tonight brings.

The nurse turned up at 5pm today, although I had seen her earlier in the day outside the Health Centre.
There had been a mix up in my prescription that is normally delivered on a Wednesday.
Instead of the script being processed at the chemist who deliver, it had gone to the Health Centre Dispensary, who are hopeless.
As the dispensary closes at mid day I had to jump in the car and get there.
Unfortunately, the wind was howling down off the sea and having got out of the car I couldn't stand up.
Just as I was about to call them on my mobile, my nurse came out. She went inside and fetched the things to me.
I couldn't do the shopping I wanted, so that will have to wait.
Felt awful having to pass the home, but as I wouldn't be able to get in there either, I just came home.
Even if I used the wheelchair I can't get up the very steep ramp off the carpark to the door of the home.

Tomorrow the forecast is for even stronger winds, and snowfall.
I have Milo for the day while his mother goes on an IT course in Aberystwyth, if she can get there that is.

So that was my day. The good news is that the ulcer if looking good and well on the way to healing.

Exactly Tec :-D

Dare I ask if you slept any better last night

Life was certainly more simple in the old days.

We communicated by telephone, or letter. Which took more time, but then we had more time
We used cash or cheque to pay for things.

Should we have a problem with the telephone line, we contacted GPO telephones. We spoke to that delightful young lady in the local telephone exchange. Who restored normal service in hours, having sent the engineer to investigate if necessary.
Now of course we are connected to Clive in Mumbai or Calcutta, or Dorothy in South Africa. Who will proceed to blow our minds with technical jargon, until we eventually abort the call in frustration - none the wiser.

When we had a query with the bank, we contacted that nice Mr Wilberforce at the local branch, who having enquired after the family's health, was only too pleased to help.
Now we go in a telephonic queue, having pressed this for that, and that for this, until we've forgotten what we wanted - and had Greensleeves inflicted upon our senses for the umpteenth time.
Having input our personal telephone banking security number, we may if lucky get to speak to a real live human being - though I'm never sure, and have to ask.

There are of course advantages to modern life, but the dinosaurs among us look back with affectionate nostalgia, to a bygone age when the world was a slower saner place.

Yes - life was simpler once upon a time.