OS Daily Friday 5th December

oystercatcher

Thought I'd come and say Hello as I posted here yesterday. ...must keep it up.

Miloiere, somehow I had a 'feeling' when others were posting hopes for the little one, then I read your last post and it confirmed my 'feeling' I know all about SMA (spinal muscular atrophy) as my first son had it, he would have been 21 last weekend and is sadly missed. There is a lot more they can do now for this condition. My XH is very active in the support and research group for this condition. Sending prayers and hopes for your little friend.

I was supposed to be spending a big part of today studying but have got nothing done. After walking the dogs and having to go into town for some 'essentials' I felt absolutely exhausted and could only flop on the settee.
My Dr has changed my medications round with the result that I can't control my back pain, so annoying ! I think I might be back there before my monthly check is due!

I feel extravagent, I bought two pairs of thermal leggings while I was out, not a particular bargain either in Millets (not many shops locally) but I already have two pairs and they are lovely and I really missed them when they were waiting to go in the white wash! So now I have two dark pairs as well and can be snugly all the time.
I looked in the 50% woolies sale but household stuff was only 20% off and didn't seem particularly bargainous so I left empty handed (that saved money!!) in fact when I was food shopping in Morrisons I noticed that many things in there were the same price as Woolies reductions !

enough woffling

hugs to all, especially the sickies and those with job problems

Oystercatcher

mioliere

Hi Oystercatcher - thank you so much for sharing such a sad experience. I am so sorry you lost your poor son to the dreadful condition. We are only just finding out about it because it's not common; I had never heard of it before. We have heard that one lady lived till the age of 31 with SMA, and had a child of her own but, as you know only too well, there is little hope. Fortunately, they are more aware of it now - it must have been dreadful when your son was diagnosed. You are the only other person I know to have experience of it.

We had to raise funds when LO was nearly two years old, to buy her a special wheelchair - the authorities said she didn't need it until she was five years old and she is only predicted to make it until the age of seven! With a massive fund-raising effort, she had her chair at the age of two and really makes the most of it. She can operate it herself (and learnt to in no time at all) and it has given her some independence as well as made it easier for her Mum and Dad. I am appalled that the powers that be were happy to deny it to her. If they could only see the difference it has made to her life, they would surely think again.

She is a lovely, cheerful and affectionate little girl with a wonderful character; this condition is so cruel, isn't it? She cannot use her legs and her arms are weakening - she can still use her hands well and loves little things like buttons, so I am constantly hunting for things to send to her.

The worry every time she picks up a cold or something is horrendous, because she cannot use her lungs properly, but we all want her to have as long as possible. It does seem, thankfully, that her wonderful consultant is doing all that is necessary, and we are all feeling slightly more hopeful than we were earlier this week. However short a life she is destined to have, every second is valuable.

Once again, thank you so much for your words. It must have been a very sad weekend for you and I shall say a prayer for your dear son.

KathyXX

Blairweech

Hello all,

Hope you are all well

Mioiliere - I am glad the little girl is a bit better, I hope she is alright.

Sorry, have not taken much of the thread in.

My bed is being delivered on Wednesday!!!!! I have next Friday off as well, so plan to spend the whole day in it It really was worth saving up for a fabulous bed and mattress, I appreciate it so much more, don't think I could actually sleep if I had bought in on credit!

Not much going on tonight, will not be putting my decs up until next weekend

So, just reading the Live on 4k thread and general chilling out

Dinner I think will be Ikea meatballs, chips and gravy

oystercatcher

Mioliere, there is a support group called The Jennifer Trust for SMA, not sure if you and the family have come across them but there is a wealth of knowledge and assistance available there. If you google the name I am sure it will come up.
There are several different types of the disease, we've been to some of the group meetings and seen the lovely little children whizzing about in their wheelchairs. They like to give them to the child when they would have been learning to walk so you can imagine how they drive , steel toecaps required!! It's lovely to see them enjoying being mobile. There are even many adults with late onset of the disease.
Our son had the acute type and wasn't well even when born, we lost him just before he was 11 weeks old, terribly sad. As I was a midwife then they let me nurse him at home which was some comfort.
After that I was desperate to have children, we had a 1 in 4 chance of it happening with each baby and no tests available then (not that XH would have had them anyway!) so we quite literally played russian roulette and I am so glad to have my three lovely healthy boys. There's always one missing though!
The one good thing which has come from this is I feel I am able to give comfort to the many mums I look after who for one reason or another lose their baby. I think losing a child is possibly one of the worst things that could happen to anyone, certainly a life changing experience.

hugs
Oystercatcher

mioliere

Thank you, Oystercatcher - I will take a look at the site and find out if the rest of the family know about it. The parents have been offered IVF treatment with the option of selecting embryos if they decide to have more children. They have been told it would be good for the LO to have a brother or sister but, of course, it's a big decision to take. I'm so pleased you have your three healthy boys but it will always feel as if one is missing, won't it?

Thanks for all the help and advice.

KathyXX

elona

mioliere

I am so glad that the little girl is improving!:j

DH has just come home after being away last night and it is lovely to have him back!!!

He is very grateful for a home cooked meal and was quite scathing over the expensive French meal provided at the hotel.

Kittie on the thread on coping with rough times mentioned a site called chemists direct and I have just made an order, have found DDs favourite perfume at a saving of over £12 so very pleased.

Made pork chops, roast potatoes and parsnips in the Remoska with cauli an green beans and veg on the hob.

DH taking me to get another sack of potatoes tomorrow and might try to get a couple of presents for Christmas as well.

Might do soup in slow cooker tomorrow as it can cook while we are out.

redruby

oystercatcher,

What a sad story, hugs to you hun, last weekend must have been very hard for you xx

taplady

evening everyone!

Happy Birthday Chrisca:beer:

Mioliere - (((Hugs))) to you Kathy and the little one, glad there is an improvement x

Oystercatcher - so sorry about your son thankyou for sharing this with us all xxxx

(((hugs))) to Tristan

have been to see Lesley this evening - she finally made it home today. She was shattered poor thing and could barely talk but she did manage to say that she couldn't wait to wake up at home with her own things around her.
She has had several nurse visits already and one is coming later to spend the night. She has a bed in the lounge and is surrounded by equipment. I was a bit upset but held it in as I couldn't let her see me like that.

Nothing OS today apart from a packed lunch - no time been on the go since 5.30 this morning!

Have a nice weekend all

take care x

Hardup_Hester

Evening all
Big hugs to all those in need, I've not really caught up with the thread for a few day as work has been a nightmare with OFSTED going on.
Hubby worked all week, sweeping leaves, moving furniture & anything else no-one else would do. I think they'd have offered him a permanent job, but BIL1 & 2 both rang yesterday & both want him to work next week, he's going with BIL1 as he has 5 weeks work starting tomorrow & BIL2 just had a few days work.
Have a good evening everyone.
Hugs Hester

chrisbethany

Hi All

Just catching up after a crazy day. Looking forward to a lie-in tomorrow but why is it that I always get up early on w/e when I think of all I want to get done but don't have to go to work? I always regret it on Mons.

Finished knitting hot water bottle covers as part of hamper pressies for DD1 and her DH - not bad for £1 each bottles from Poundland, and free wool oddments. Feel a real church mouse sitting snuggled up in a knitted blanket with the wind whistling outside - it's amazing how warm & cosy you keep like this. Going up in the loft tomorrow - I'm sure there's an OS eiderdown up there that could be cut into 1/4s to make knee blankets. Good night and God bless,

Chris