AT last!!!
I've been trying to update this for days now and first of all it wouldn't let me in then I've been ill... anyways apologies to anyone waiting for this.
Fairy visited Kay a couple of weeks ago, but it didn't go as great as the time before, Kay wasn't feeling brilliant and her and A had a few words. Still enjoyable because she had loads of hugs and smiles off Fairy, but not as good as it could have been. Kay's updated pix of Fairy's visit on her facebook.
Since then, Kay hasn't been great. She's still on oxygen and her heart has been playing up again, causing her blood pressure to be low and she's been fainting quite a bit and feeling really dizzy.
Paris came to visit with Leo and Kay managed pretty well, although was feeling quite panicky and not great mentally on that day, so it was a bit of a struggle. She did enjoy seeing Paris and it was nice to see Leo again after so long. Paris was just beside himself with excitement having his mum and dad in the same room together!
Kay has now got a chest infection, and instead of the prongs up her nose to deliver oxygen is now back on the mask. The doctors said that if her SATS (oxygen levels in the blood) didn't pick up she'd have to go on CPAP (continuous positive airway pressure). So far though, she's managing to stay on just the oxygen mask and says she feels a little better than yesterday and is managing to sit up in bed for short spells (has had to be laying flat due to the extreme dizziness).
She's feeling really cut off from the world at the moment as she can't access the internet while she's so ill so would really REALLY appreciate any extra texts people can send her!
Other than that, as I always tell her, she's a tough little cookie and she's coping really well considering everything she's going through and has gone through in the past.
As always, anyone who isn't in text/phone contact with her, I'll pass on messages left on here.
Sending you massively positive vibes Kay and hoping your health improves really quickly. Positive thinking girl...xx
Monday, 2 November 2009
Thursday, 22 October 2009
22nd October update on Kay
Aagh been slacking, got so much to update on!
Ok, so what i should have put on the bottom of the last update was that Kay had a gamma camera exam which meant she had to lay perfectly still, which panicked her a bit (can be scary). I think this was to check her heart - not sure if any results of anything have come back yet, but if so Kay hasn't been told about them (or perhaps has and just wasn't listening more to the point!)
Since then, Kay has been improving slowly but surely, she's feeling lots better than last week in that she's not passing out as much, and feels warmer (apart from her hands - maybe she needs matching gloves to go with the new strawberry hat that Lily took her up!). She even managed to chat with me on msn twice this week so far, so she's definately improved.
Just chatted to her now and she is in a pretty good mood and is feeling pretty upbeat at the moment, obviously sleeping a fair amount still, which she is going to need (she had dialysis this morning too so even more so on those days). Had physio on Tuesday and although it really tired her out and her legs hurt, it made her so hungry she ate a whole yoghurt afterwards (take note dieticians!)
Ok, so Fairy came to visit last Saturday and Kay had a wonderful day with lots of snuggles and squeals (from the baby, not Kay!) Here are some texts I got from Kay on that day - it sums up the day she had with her little one far better than I could say:
'She's fab. Just had naptime and she's sprawled across my tummy :)'
'I had an abnormally chatty day today.'
'She sends her squeals:-) she has the cutest laugh EVER'
'She has been laughing loads, specially when she's tickled, she laughs so much she falls over if she's sat up. I rung Paris and put him on loud speaker and he was like 'I'm helping Lily with nackinuming (vacuuming) listen -turns vac on - Does Fairy like it? Lol bless it was so funny. This morning fairy was clingy to Alannah :-( but this afternoon she has been holding her arms out for me :-)'
'She's so cute, Having her bottle now and having snuggles. She's like a really little baby bless her. Alannah says she can bring her back next weekend as long as it's ok to bring the other baby she looks after too, which I said was fine. Fairys definately drowning in cuddles.'
The difference in Kay when she has one of her littlies with her is just amazing, so glad she was feeling stronger by the time Fairy came to see her so she wasn't feeling quite so rubbish. Think her texts just say how much she loves those babies!
Can't think of anything else to update on at the moment! Just realised how boring the titles of the posts are compared to Kays! Guess I'm a bit of an organisational freak and Kay will have to sort that out when she's back online properly lol.
Ok, so what i should have put on the bottom of the last update was that Kay had a gamma camera exam which meant she had to lay perfectly still, which panicked her a bit (can be scary). I think this was to check her heart - not sure if any results of anything have come back yet, but if so Kay hasn't been told about them (or perhaps has and just wasn't listening more to the point!)
Since then, Kay has been improving slowly but surely, she's feeling lots better than last week in that she's not passing out as much, and feels warmer (apart from her hands - maybe she needs matching gloves to go with the new strawberry hat that Lily took her up!). She even managed to chat with me on msn twice this week so far, so she's definately improved.
Just chatted to her now and she is in a pretty good mood and is feeling pretty upbeat at the moment, obviously sleeping a fair amount still, which she is going to need (she had dialysis this morning too so even more so on those days). Had physio on Tuesday and although it really tired her out and her legs hurt, it made her so hungry she ate a whole yoghurt afterwards (take note dieticians!)
Ok, so Fairy came to visit last Saturday and Kay had a wonderful day with lots of snuggles and squeals (from the baby, not Kay!) Here are some texts I got from Kay on that day - it sums up the day she had with her little one far better than I could say:
'She's fab. Just had naptime and she's sprawled across my tummy :)'
'I had an abnormally chatty day today.'
'She sends her squeals:-) she has the cutest laugh EVER'
'She has been laughing loads, specially when she's tickled, she laughs so much she falls over if she's sat up. I rung Paris and put him on loud speaker and he was like 'I'm helping Lily with nackinuming (vacuuming) listen -turns vac on - Does Fairy like it? Lol bless it was so funny. This morning fairy was clingy to Alannah :-( but this afternoon she has been holding her arms out for me :-)'
'She's so cute, Having her bottle now and having snuggles. She's like a really little baby bless her. Alannah says she can bring her back next weekend as long as it's ok to bring the other baby she looks after too, which I said was fine. Fairys definately drowning in cuddles.'
The difference in Kay when she has one of her littlies with her is just amazing, so glad she was feeling stronger by the time Fairy came to see her so she wasn't feeling quite so rubbish. Think her texts just say how much she loves those babies!
Can't think of anything else to update on at the moment! Just realised how boring the titles of the posts are compared to Kays! Guess I'm a bit of an organisational freak and Kay will have to sort that out when she's back online properly lol.
Thursday, 15 October 2009
15th Oct update on Kay
Kay's had yet another rough week, although I'll start with Paris' visit at the weekend.
Paris visited Kay on Saturday and Sunday and they did lots of playing doctors, wrapping up with bandages, giving medicine (Smarties) and Paris had a little nap with Kay when they were playing babies! Kay was worn out though and on Sunday was really feeling particularly bad, dizzy and tired. Paris of course wanted Kay to get out of bed and 'play properly' but she was not up to it. Kay managed to negotiate Paris watching Monsters Inc while she had a sleep but felt really sad and unhappy that she had not managed to play properly with Paris during his visit this time.
Since then she has continued to be pretty much down, her blood pressure is still really low, she's had an ECG on her heart which found it to be beating too fast and the doctors were looking into her fainting episodes which are still happening despite her being in bed and laying down. Kay's obviously finding all this really hard to deal with and it's hard keeping her positive when there's so much going wrong and when she feels so ill all the time.
She had a gamma test yesterday along with the usual bloods over the last week but she hasn't received any results as yet.
One good bit of news, Alannah's agreed to take Fairy to see her on Saturday, I'm sending out positive vibes to her that she feels a bit better and is able to enjoy her visit with her baby.
Paris visited Kay on Saturday and Sunday and they did lots of playing doctors, wrapping up with bandages, giving medicine (Smarties) and Paris had a little nap with Kay when they were playing babies! Kay was worn out though and on Sunday was really feeling particularly bad, dizzy and tired. Paris of course wanted Kay to get out of bed and 'play properly' but she was not up to it. Kay managed to negotiate Paris watching Monsters Inc while she had a sleep but felt really sad and unhappy that she had not managed to play properly with Paris during his visit this time.
Since then she has continued to be pretty much down, her blood pressure is still really low, she's had an ECG on her heart which found it to be beating too fast and the doctors were looking into her fainting episodes which are still happening despite her being in bed and laying down. Kay's obviously finding all this really hard to deal with and it's hard keeping her positive when there's so much going wrong and when she feels so ill all the time.
She had a gamma test yesterday along with the usual bloods over the last week but she hasn't received any results as yet.
One good bit of news, Alannah's agreed to take Fairy to see her on Saturday, I'm sending out positive vibes to her that she feels a bit better and is able to enjoy her visit with her baby.
Saturday, 10 October 2009
10th Oct update on Kay
Kay has still been cold on and off and keeps needing warm plasma to warm her body temperature up which makes her feel better for a time.
Positive thinking is the way forward now - it's hard work but Kay is trying her best to try and put positive spins on everything and is focussing on realising that actually she's a pretty cool person. I'm going to put my 5 things about her on here so she's got a record of it, feel free to add your own in the comments and I'll add them on to the list here so they're all together then when Kay needs a little boost, she can come straight on here and realise why we all love her so much!
Text from Kay yesterday:
'Guess where kaylies sat? Outside! It's FREEZING. kws reet scared. I've got like a billion jackets on tho'.
Understandably seeing that she's been suffering from hypothermia on and off for a few days! She also had the infamous red hat on too - which incidentally turned out to be a Man U hat that she'd had on backwards so hadn't noticed lol! Not sure how well that's going to go down with the Leeds crowd!
Today, Paris is down for a visit - I'll report more of that when Kay fills me on in the details - last heard though was Paris waiting for his mum to finish her dialysis so they could go for a wheelchair ride together! Paris ended up pushing Kay and now thinks he's a muscle man capable of lifting a car! I'm sure they're having a lovely day together as I write this.
Also today is the twins due date, and Kay is obviously reflecting on that, it seems weird that Fairy had her first birthday what seems like ages ago now and yet they were only just due today. I shall light my candle for Beau and Fairy tonight.
Kay's list of things she likes about herself:
My eyes are a nice blue
I make up good stories (for Paris)
My eyebrows are nice
I have a good memory for phone numbers
I make Karen laugh
Karen's list for Kay:
You've got a great sense of humour
You are a good listener
You are strong
You have so much love for your children
You are clever.xx
L's list for Kay (L, didn't want to put your name without permission, but if you don't mind let me know and I'll add it in.x)
I like that you're individual
I like that you're open to any conversation no matter what the topic
I like that you're not a moaner
I like that you always end up having a giggle with me, even on our worst days
I like that you're so beautiful and you don't even know it.xxx
Anon posters list for Kay:
Shes the strongest 17 year old I've ever spoken to
She has a lot of life experience and isnt put off talking people
She makes beautiful babies
She hasnt given up, no matter what lifes thrown at her
She is very down to earthxx
Joanne Botts list for Kay:
Shes a great mother to all her babys and will never give up on them
She is funny and likes to have a laugh
Shes smaller then me, i loved to be that small lol
She has a great personalityshes a great friend, listener
Overall shes a strong 17yrs old girl i have ever spoken to and i wish her to get well soon so she can be with Paris and Blair. hugs kay xxxx
Amy's list for Kay:
1 You made my son a daddy and me a nana!
2 Your beautiful inside and out
3 You are NOTHING like your parents and i know your scared that you are but i promise you arent-on little paris's life
4 You dont expect anything from anyone
5 You try your best even when you feel shit and that theres no pointAll my love x
Keyworker's list for Kay:
She's brave
She doesn't expect too much/anything
Her hair doesn't need straightening so she's jealous!
When she smiles, it's special
She doesn't complain much.
Positive thinking is the way forward now - it's hard work but Kay is trying her best to try and put positive spins on everything and is focussing on realising that actually she's a pretty cool person. I'm going to put my 5 things about her on here so she's got a record of it, feel free to add your own in the comments and I'll add them on to the list here so they're all together then when Kay needs a little boost, she can come straight on here and realise why we all love her so much!
Text from Kay yesterday:
'Guess where kaylies sat? Outside! It's FREEZING. kws reet scared. I've got like a billion jackets on tho'.
Understandably seeing that she's been suffering from hypothermia on and off for a few days! She also had the infamous red hat on too - which incidentally turned out to be a Man U hat that she'd had on backwards so hadn't noticed lol! Not sure how well that's going to go down with the Leeds crowd!
Today, Paris is down for a visit - I'll report more of that when Kay fills me on in the details - last heard though was Paris waiting for his mum to finish her dialysis so they could go for a wheelchair ride together! Paris ended up pushing Kay and now thinks he's a muscle man capable of lifting a car! I'm sure they're having a lovely day together as I write this.
Also today is the twins due date, and Kay is obviously reflecting on that, it seems weird that Fairy had her first birthday what seems like ages ago now and yet they were only just due today. I shall light my candle for Beau and Fairy tonight.
Kay's list of things she likes about herself:
My eyes are a nice blue
I make up good stories (for Paris)
My eyebrows are nice
I have a good memory for phone numbers
I make Karen laugh
Karen's list for Kay:
You've got a great sense of humour
You are a good listener
You are strong
You have so much love for your children
You are clever.xx
L's list for Kay (L, didn't want to put your name without permission, but if you don't mind let me know and I'll add it in.x)
I like that you're individual
I like that you're open to any conversation no matter what the topic
I like that you're not a moaner
I like that you always end up having a giggle with me, even on our worst days
I like that you're so beautiful and you don't even know it.xxx
Anon posters list for Kay:
Shes the strongest 17 year old I've ever spoken to
She has a lot of life experience and isnt put off talking people
She makes beautiful babies
She hasnt given up, no matter what lifes thrown at her
She is very down to earthxx
Joanne Botts list for Kay:
Shes a great mother to all her babys and will never give up on them
She is funny and likes to have a laugh
Shes smaller then me, i loved to be that small lol
She has a great personalityshes a great friend, listener
Overall shes a strong 17yrs old girl i have ever spoken to and i wish her to get well soon so she can be with Paris and Blair. hugs kay xxxx
Amy's list for Kay:
1 You made my son a daddy and me a nana!
2 Your beautiful inside and out
3 You are NOTHING like your parents and i know your scared that you are but i promise you arent-on little paris's life
4 You dont expect anything from anyone
5 You try your best even when you feel shit and that theres no pointAll my love x
Keyworker's list for Kay:
She's brave
She doesn't expect too much/anything
Her hair doesn't need straightening so she's jealous!
When she smiles, it's special
She doesn't complain much.
Monday, 5 October 2009
5th Oct update on Kay
Kay's asked me to update her blog for her as she hasn't been around for so long. Forgive any mistakes etc - I'm sure Kay will put them right when she gets back online!
Ok, so long time to catch up on...
Kay was admitted to hospital a few weeks ago as she was really shaky and her limbs were really painful, especially her legs. Her peripheral neuropathy was playing up (side effect) and they weren't sure whether it was also some of her drugs having an effect too. After playing around with her drugs they then decided she needed to have her graft redone so she went for an operation on 21st September. They were initially planning to put it in her leg but at the last minute changed it to in her neck, which understandably Kay was not too happy with. Operation went well, but poor Kay was wiped out for ages after - she only woke up really late on Paris' birthday to wish him happy birthday (22nd) but feels relieved that she didn't miss it completely.
Since then Kay has been sleeping virtually all the time - she is completely exhausted and can't stay away for very long at a time.
Over the last couple of days, she has been suffering from hypothermia (extreme coldness). Her internal body temperature is so low that her lips and fingers were blue. She's needed daily doses of warm plasma to try to raise her temperature and had to have emergency dialysis last night. I have to admit to being a bit mean when she told me that she was wrapped up in a blanket with her fluffy socked feet sticking out one end and a red woolly hat (to keep her body heat in) on the other! She sounded like a hot dog with tomato sauce lol. (sorry Kay!!)
Today she was a bit warmer first thing and took her hat off only for her body temperature to plummet again, so she's having yet more warm plasma.
I've probably forgotten loads of important stuff and got the stuff I did write down wrong but that's the gist of what's been going on. Kay wanted you all to know what's going on with her and that she is still around!
Sending you biggest hugs Kay and wishing you well as always.xx
Ok, so long time to catch up on...
Kay was admitted to hospital a few weeks ago as she was really shaky and her limbs were really painful, especially her legs. Her peripheral neuropathy was playing up (side effect) and they weren't sure whether it was also some of her drugs having an effect too. After playing around with her drugs they then decided she needed to have her graft redone so she went for an operation on 21st September. They were initially planning to put it in her leg but at the last minute changed it to in her neck, which understandably Kay was not too happy with. Operation went well, but poor Kay was wiped out for ages after - she only woke up really late on Paris' birthday to wish him happy birthday (22nd) but feels relieved that she didn't miss it completely.
Since then Kay has been sleeping virtually all the time - she is completely exhausted and can't stay away for very long at a time.
Over the last couple of days, she has been suffering from hypothermia (extreme coldness). Her internal body temperature is so low that her lips and fingers were blue. She's needed daily doses of warm plasma to try to raise her temperature and had to have emergency dialysis last night. I have to admit to being a bit mean when she told me that she was wrapped up in a blanket with her fluffy socked feet sticking out one end and a red woolly hat (to keep her body heat in) on the other! She sounded like a hot dog with tomato sauce lol. (sorry Kay!!)
Today she was a bit warmer first thing and took her hat off only for her body temperature to plummet again, so she's having yet more warm plasma.
I've probably forgotten loads of important stuff and got the stuff I did write down wrong but that's the gist of what's been going on. Kay wanted you all to know what's going on with her and that she is still around!
Sending you biggest hugs Kay and wishing you well as always.xx
Wednesday, 9 September 2009
Paris, Fairycakes & Beau
♥♥♥♥♥♥♥♥
Today paris starts pre school. Aw i cant believe how fast time has gone and how much things have changed. I wish i could see his little face, and i wish i was the one to be dropping him off and picking him up. I miss him so much. I got leo to call me this morning and i spoke to paris, hes so excited bless him.
On friday for doing all my dbt cards in august for the first time ever go me lol i got to take fairycakes out with keira without alannah so that was soo nice. I made alannah bring the nice buggy so i had f facing me and we went for a walk around an open garden and relaxed on the grass a bit. then we went to tescos to get a few thigns and had a drink in the cafe. and back at mhu i made paris a card for going to big boy school and fairy helped and got pink paint everywhere, its still all around the sink.
Had a blood test this morning and it was ok, not too traumatic. Just reminded me of being pregnant. Yeah i should be used to needles by now, it was just the chair, the needle, everything. Sigghh. I wish i could just lie down and never get back up, im so so tired. Im feeling like im stood next to myself, i should just bash myself on the head and have a little holiday. Ive like been turned inside out, nothings myself anymore, its all theirs. Im so scared, always scared. Im tired of being scared. And im tired of needing to make an effort.
My heart is well and truly broken into pieces, unreparable no matter how much therapy i have. Beaus got a section on my bereavement councillors noticeboard, and at the moment it just makes me so sad, that she needs to have a picture on there. Its a lovely thing to have, and know that my baby is remembered every time bc sees her picture, and that people who see her picture see a piece of her, but i wish there was no need. No need to remember her if she was right here huh?
I keep thinking when im with fairy would beau look like this? would beau be bigger or smaller, crawling, sitting, walking? I want to know all these things, and i still feel like fairys leaving her behind. I need to know that beaus not left in the past, and that as time goes on she doesnt stay as a little point in july 2008. Shes growing too in heaven, and i need to remember its alongside fairy. I hope fairy remembers something of her, which is a bit stupid cos she wont will she, being only 3 weeks old.
I hope beau knows how much i loved her, how much i do still love her. I want to touch her face and kiss her nose, feel her heartbeat and have her hold my finger. I want her to scream and cry because her nappys uncomfortable. I wish i could trade places with her. I want her to grow up and smile and laugh, i want her to feel the rain on her face, and get a tan, buy clothes, have a boyfriend. I dont want her to be dead. And i feel like im wasting my life, beau is much more deserving of life, im ungrateful and selfish and i take it for granted. Im not healthy and im not needed. And ive let her down. I was going to do things so right, i was going to be such a good mum, work my ass off and give them the world.
♥♥♥♥♥♥♥♥
Today paris starts pre school. Aw i cant believe how fast time has gone and how much things have changed. I wish i could see his little face, and i wish i was the one to be dropping him off and picking him up. I miss him so much. I got leo to call me this morning and i spoke to paris, hes so excited bless him.
On friday for doing all my dbt cards in august for the first time ever go me lol i got to take fairycakes out with keira without alannah so that was soo nice. I made alannah bring the nice buggy so i had f facing me and we went for a walk around an open garden and relaxed on the grass a bit. then we went to tescos to get a few thigns and had a drink in the cafe. and back at mhu i made paris a card for going to big boy school and fairy helped and got pink paint everywhere, its still all around the sink.
Had a blood test this morning and it was ok, not too traumatic. Just reminded me of being pregnant. Yeah i should be used to needles by now, it was just the chair, the needle, everything. Sigghh. I wish i could just lie down and never get back up, im so so tired. Im feeling like im stood next to myself, i should just bash myself on the head and have a little holiday. Ive like been turned inside out, nothings myself anymore, its all theirs. Im so scared, always scared. Im tired of being scared. And im tired of needing to make an effort.
My heart is well and truly broken into pieces, unreparable no matter how much therapy i have. Beaus got a section on my bereavement councillors noticeboard, and at the moment it just makes me so sad, that she needs to have a picture on there. Its a lovely thing to have, and know that my baby is remembered every time bc sees her picture, and that people who see her picture see a piece of her, but i wish there was no need. No need to remember her if she was right here huh?
I keep thinking when im with fairy would beau look like this? would beau be bigger or smaller, crawling, sitting, walking? I want to know all these things, and i still feel like fairys leaving her behind. I need to know that beaus not left in the past, and that as time goes on she doesnt stay as a little point in july 2008. Shes growing too in heaven, and i need to remember its alongside fairy. I hope fairy remembers something of her, which is a bit stupid cos she wont will she, being only 3 weeks old.
I hope beau knows how much i loved her, how much i do still love her. I want to touch her face and kiss her nose, feel her heartbeat and have her hold my finger. I want her to scream and cry because her nappys uncomfortable. I wish i could trade places with her. I want her to grow up and smile and laugh, i want her to feel the rain on her face, and get a tan, buy clothes, have a boyfriend. I dont want her to be dead. And i feel like im wasting my life, beau is much more deserving of life, im ungrateful and selfish and i take it for granted. Im not healthy and im not needed. And ive let her down. I was going to do things so right, i was going to be such a good mum, work my ass off and give them the world.
♥♥♥♥♥♥♥♥
For Beau x
I am going insane
From all this pain
I think your tears are in the rain
I just can't handle this much pain
I can't wait to get to heaven and hold you
And sit down and get to know you
I will never stop kissing you
And I will never stop missing you
From all this pain
I think your tears are in the rain
I just can't handle this much pain
I can't wait to get to heaven and hold you
And sit down and get to know you
I will never stop kissing you
And I will never stop missing you
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