Sue's Clinic - 14th April @ GOS???

Please post here any query that relates to Great Ormond Street Hospital/or your child's/adolescents hospital appointments generally. Within this section is helpful info regarding tips & hints for hospital visits -stays.

Re: 8 - 18 December 08 Physio Course

Postby MandyG » Tue Dec 02, 2008 12:38 pm

hi amanda

I have been to the rainforest cafe in florida and it was nice.

I did try to budget money wise - I had to pay for 5 of us and only had £150 plus my mum had £80 - my mum was able to get more during the 2 weeks but we could have done it on way less if my mum had not of been such a snob. I dont have much money so am used to knowing what is a nessessity and what is not - my mum spent £40 in first week on wine which I was fuming mad about.

anyway lol - it will be fine - just make sure you have a list of questions for the first day - the assessment takes about 30 minutes and it is on the penguin ward. but you may have to wait a while before getting seen - my tip would be to get there earlier than stated on your letter then youmight get taken first.

anything else let me know - it's still all fresh in my mind lol

xxxx
Mandy - DX EDS III by prof G June 2009
mum to Rachel 9-DX EDS III by prof G June 2009
Rebecca, 6, DX EDS III nov 2008, GDD, selective mutism, PDA
Charlotte 3- EDS III DX 2010
Louie 2- showing signs
Also carer to my husband who has narcolepsy + cataplexy
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MandyG
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Location: fife

Re: 8 - 18 December 08 Physio Course

Postby Amanda » Tue Dec 02, 2008 3:14 pm

Thanks you are a star.

I know what you mean about mum's and their wine!! Mine passed away this summer and it all seems so insignificant now but I did moan at her at lot about being steady on the booze, well we all did! She wan't an alc'y though so don't misunderstand it was just the tipple here and there. Still she was 76 and caring for my Dad was hard work, so equally I could understand. Anyway enough of that.

We are positively excited even though I am sure it will be hard work for Alexander. Am busy getting some sought of itinerary together. He hasn't objected to the school part either so I am hoping to get him to attend that session but not holding my breath. We are home educating at the moment as it is easier than having an exhausted boy. We are both really enjoying it too so another reason. 4/5 is far too young to be at school for such long hours anyhow, though a few mins peace and quiet a day wouldn't go amiss LOL

Thanks again for everything, I can't thank you enough

bye for now

Amanda
Amanda
 

Re: 8 - 18 December 08 Physio Course

Postby MandyG » Tue Dec 02, 2008 5:16 pm

hiya

sorry to hear about your mum.

I have no problem with people treating themselves - life is hard. My husband and I started smoking as we are so stressed just now - numerous problems - he cant work as he has suspected narcolepsy, I am his carer and rebecca's and I have 2 other kids to look after. We have limited money etc etc.

BUT we never smoke in front of kids - only 1 a night if that and only when they are all asleep.

I had a big problem with my mum drinking so much when in london cause we were on a very very strict budget and she doesn't understand that thatmoney could feed you for next few days (they too are going through serious money probs but it hasn't hit them yet) , learning to stick to a budget is hard and it takes a long time to get used to, but once you are used to it you really cant treat your self - well I cant - I fiond when we do have extra money we feel like we cant treat ourselves if you know what I mean lol?

anyway - school is only for 1 hour and they get taken straight there by the physios - you pick them up at the school bit.

it's just fun stuff - dont actually think it's proper schooling - they have cookery one day, painting next stuff like that

I am still considering home schooling, but luckily the head mistress at rebecca's nursery and primary has been so nice and they have accomodated all our problems so I haven't got any worries yet. I do agree it's too much forlittle ones. I feel so sorry for rachel as she gets so tired plus we think she may have eds too but lesser than becca. If she experienced any probs I would take her out no questions.

I hate being away from my kids lol

xxxx
Mandy - DX EDS III by prof G June 2009
mum to Rachel 9-DX EDS III by prof G June 2009
Rebecca, 6, DX EDS III nov 2008, GDD, selective mutism, PDA
Charlotte 3- EDS III DX 2010
Louie 2- showing signs
Also carer to my husband who has narcolepsy + cataplexy
User avatar
MandyG
enthusiast
 
Posts: 223
Joined: Mon Sep 10, 2007 5:32 pm
Location: fife

Re: 8 - 18 December 08 Physio Course

Postby MandyG » Sat Dec 06, 2008 1:59 pm

hiya

just want to wish you all the best and hope you get a lot out of the 2 weeks

please let us know how you got on

mandy
xxxxxx
Mandy - DX EDS III by prof G June 2009
mum to Rachel 9-DX EDS III by prof G June 2009
Rebecca, 6, DX EDS III nov 2008, GDD, selective mutism, PDA
Charlotte 3- EDS III DX 2010
Louie 2- showing signs
Also carer to my husband who has narcolepsy + cataplexy
User avatar
MandyG
enthusiast
 
Posts: 223
Joined: Mon Sep 10, 2007 5:32 pm
Location: fife

Re: 8 - 18 December 08 Physio Course

Postby Amanda » Sat Dec 06, 2008 5:14 pm

Hiya Mandy

It has been really good talking to you and thanks for all your help.

I'll be in touch in the near future to let you know how we go.

Best wishes

Amanda
Amanda
 

Re: 8 - 18 December 08 Physio Course

Postby Amanda » Thu Dec 11, 2008 10:51 am

Hi just to let you know that Alexander is doing really well, I am really proud of him.

He had a great birthday too yesterday.

Best wishes

Amanda
Amanda
 

Re: 8 - 18 December 08 Physio Course

Postby MandyG » Thu Dec 11, 2008 8:48 pm

happy belated birthday alexander

so glad you are having a brill time- I knew you would

xxxx
Mandy - DX EDS III by prof G June 2009
mum to Rachel 9-DX EDS III by prof G June 2009
Rebecca, 6, DX EDS III nov 2008, GDD, selective mutism, PDA
Charlotte 3- EDS III DX 2010
Louie 2- showing signs
Also carer to my husband who has narcolepsy + cataplexy
User avatar
MandyG
enthusiast
 
Posts: 223
Joined: Mon Sep 10, 2007 5:32 pm
Location: fife

Re: 8 - 18 December 08 Physio Course

Postby MandyG » Sat Dec 20, 2008 9:26 pm

hi amanada

you should be home by now so I was just wanting to see how it all went

hope you are ok

mandy
xxxx
Mandy - DX EDS III by prof G June 2009
mum to Rachel 9-DX EDS III by prof G June 2009
Rebecca, 6, DX EDS III nov 2008, GDD, selective mutism, PDA
Charlotte 3- EDS III DX 2010
Louie 2- showing signs
Also carer to my husband who has narcolepsy + cataplexy
User avatar
MandyG
enthusiast
 
Posts: 223
Joined: Mon Sep 10, 2007 5:32 pm
Location: fife

Re: 8 - 18 December 08 Physio Course

Postby Amanda » Sun Dec 21, 2008 10:02 am

Hi

Hotel is very good isn't it and aren't the staff absolutely lovely. You were right of course about not worrying as it all goes pretty smoothly doesn't it.

I was extremely disappointed to find that they won't review my son's gastro problems and having set this trip up as pretty much the end of having to find new consultants and just getting those last bits sorted, this was a big fall for me. Stupid of me to have set myself up for this fall but there you go.
We had an x-ray taken of Al's hips but they would not let me see it which I find incredibly annoying and now costly as I have to pay for it. Al's birthday also ended up being the day my uncle died and this combined with the loss of my mum (his sister) in July - no more family left on that side now - meant I was pretty emotional and a pain in the axle.

The most important bit was that Alexander did really well and he approached the course positively and enthusiastically and ended up improving significantly which was absolutely fantastic. I thought the pain mgt session was very very helpful and we are very pleased with this.

The only downside I suppose is that Al is falling more as his ankles are giving away a lot. The tippy toes exercise takes a while to start working apparently and we are looking forward to a positive outcome in the future for these.

All in all a very good experience. Not one though that I am hoping to do again as now we have the tools I am keen we self manage.

It was good to see the other children making a marked improvement and to see them being very pleasantly surprised despite a lot of grumbles.

Amanda
Amanda
 

any one going on gosh phyio course march 2009

Postby alison1984 » Thu Jan 08, 2009 7:51 pm

hi there i there any one else going on the intense physio course at GOSH in march this year?

my 4 year old daughter is booked to go on the course and just wondered if any one else was going :think:
alison1984
 

Anyone going in to GOSH beginning of Feb

Postby Ejem » Tue Jan 13, 2009 1:12 am

My 4 year old is doing the rehab programme beginning of Feb and wondered if anyone else was going to be there?
Haven't posted on here for ages....
Forgot what a great resource this site is

Karen
Ejem
 

Re: Anyone going in to GOSH beginning of Feb

Postby alison1984 » Tue Jan 13, 2009 7:52 pm

hi there im not going in feb, but my 4 year old is doing it in march.
it would be nice to know how your little one gets on though being that they are of similar age.
hope it goes well
ali x
alison1984
 

Re: Anyone going in to GOSH beginning of Feb

Postby rebeccagraceson » Fri Jan 16, 2009 10:43 am

Hi

We're not doing a rehab programme but we have an appointment on the 18th Feb. If I survive the shock of the train prices, that is :roll:

Becky
xx
rebeccagraceson
 

Re: Anyone going in to GOSH beginning of Feb

Postby popsmum » Fri Jan 16, 2009 12:14 pm

hey a very good friend of mine will be on the feb course! im trying to get her an her daughter to join, its her daughter whos on the course, 9th i think it is? kim x
popsmum
 

Re: Anyone going in to GOSH beginning of Feb

Postby Ejem » Mon Feb 02, 2009 10:01 pm

cancelled due to snow grrrr my daughter cried this morning when I told her :cry: going in on Wednesday but gutted that she is missing 2 days.
Ejem
 

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