Sunday, May 27, 2007

Any news m'dear?

I'm afraid not. Things remain the same.

Peter has started hypnotherepy to try and ease his pain (or ache as he must now refer to it). It seems to be making some difference. He seems more peaceful, is awake more hours in the day, and slowly the backrest of his bed is getting lower.

The call hasnt come in, no false alarms.

Life carries on.

Thursday, May 17, 2007

Small things

First of all, that is Laurens thumb. Last thursday, about 6.30pm she delcared that her thumb hurt, and then showed me it. The joint had complately popped out. I asked her when it happened. she told me that it had happened during morning nursery! Oh yes. Welcome to a world of a child who doesnt think to tell you stuff, like when they are hurt. This is the girl who walked into the living room from the garden with every single one of her toes cut to shreds and didnt say a word. She doesnt tell us stuff like this, which can lead to infections. No idea why. She just doesnt. And never has. I seem to check each night for any unspotted cuts, bruises etc. She walks into walls, bouces off them and carries on. She can go skidding across the floor after falling off her scooter and not batt an eyelid. Other parents watch in amazment as she takes fall and after fall and doesnt cry. 'I'm ok' is a very popular phrase in this house. She has been poked and prodded by medical staff so often, due to this, speech delays and other little issues. I dont know if she does have any special needs (maybe different needs?) to NT children, but there is definatly something about Lauren that makes people think. People are very drawn to this gigantic 4 year old, and the puzzled looks of some of our elderly neighbours when they realise she isnt in school yet are just classic. I have uttered the words 'she is only 4' so many times since her birthday. At age 2, I was asked why she wasnt joing the other children in Nicoles school class (age5). Simple answer 'because she is two years old'. I sit and watch her at times, in amazment as she seems so grown up, but also so young. If i didnt know she was 4years old, it would shock me as well. Today I handed her a t-shirt for an 8year old.

I dont know why I am posting this, just feeling a bit strange, as soon another SALT week is starting (speech and language therepy, whoppeee more working on ssssssssss/shhhhhh for a whole week!). She starts school in september, and am preparing mentally for all the new professionals who havent met her yet, to start with the autism/dyspraxia/HFA/aspergers mentions, re-referrals back to clinics, more meetinsg etc etc, and doing it all over again. As we do every year. I am hoping she doesnt go completely silent for 6 weeks again. Because that was a major issue for her last pre-school. She was communicating, just wouldnt talk to them. Dont blame her at times to be honest. When people say 'oh arent you talking today' would you really want to, or just mentally think 'no, bog off'.

Second small thing. Serenas eyes. She had eye clinic yesterday. She isnt using her right eye at all. So we have to patch her left eye for two months and see if we can get her using it again. She has a very funky Elmo soft patch, which has to be worn for an hour a day. I am expecting tears and tantrums over this.

Wednesday, May 16, 2007

Overwhealmed really.

Feeling very very overwhelamed right now. Dont really know why. Every now and then, this stuff hits me. The LVAd IS real, it IS part of our lives, and Peter is waiting for a transplant. The rest of the time, things seem normal. But when i stop and think about it, I realised, this isnt normal. Not at all.

Today I received an invitation for my aunts wedding. They want a RSVP but this saturday. They say they can plug Peter in, he is very welcome to come, will take care of him etc. But there is one thing stopping me from saying yes. and that is other people. We have a very very large family, my mum is one of elevan children. And they all have children, and some of those children have children now as well. The thought of being i na large hall with 100+ people, children running about and doing the wedding dance slide of the floor on their knees, with Peter and his wires there, well my blood run cold. All it would take is for one child to trip into his machine and it could be deadly. And then then adults having a drink, stumbling about (not that they are all dunkards, but its a celebration, i'm sure a couple will be tipsy), again not something that should be mixed with wires. But I am still reluctant to RSVP to say no we cant attend, as i am really still clining onto the tiniest shred of hope that transplant will happen very very soon and by the wedding date in june, life will be normalish.

I cant bear the thought of our lives carrying on in this neverending round of hospital visits, medication, nurses etc with no end.

Friday, May 04, 2007

Critical Alarms

Have been at harefield all day. went up intially to see pain team and train 4 new carers. saw pain team andthe training session was going well, Rob, the VAD nurse was just demonstrating the beep which happens when you unplug from the mains, plugged the lead back in and al lthe major alarms went off Totally freaked me and i said 'what did you do?' to rob. he was flummoxed, then before we could check everything it stopped and went back to normal.

had to try unplugging and plugging back in again to see if it happened again and it didnt. so they called thoratec (who make the VAD) who said they can get a replacement machine on tuesday. peters back up only had 50 hours, so he has a tempory machine which they use for training sessions which has been reprogrammed to his settings, and we have to go back there next week.

so a one hour visit took 5 hours. [sighs]

Tuesday, May 01, 2007

Very Late Farm Pictures

Six months ago I took the girls to a local farm, and I am just uploading them now. It is also another place where Peter has never been with us. Its far too hilly for him to cope with his machine. Its a pain with a 9yr old in a wheelchair (my nephew), so certainly wouldnt be able to get Peter up the hills. Plus Eileen the sheep may want to eat his wires hehe.