If Love had wings, I'd fly you to the heavens
To play among the stars
and dance along the Rainbows.
If Love had wings Id take you to tomorrow,
You'd run and laugh and play
and I would hear you speak my name
If love had wings...
This is the Chorus of the song I am writing at the moment.My dream is to be able to record it and the proceeds go to Rett Syndrome research. The lyrics speak of my love for my girl and my longing for a cure but equally echo I am sure, the feelings of lots parents of Rett angels past and present.
So if anyone reading this would like to either help sing it with me,have a recording studio which they wouldnt mind sharing or would like to help make this dream come true...??
Thursday, 11 November 2010
Its November...
Well its somehow managed to be a month since my last update,not sure how that happened..but then things have been quite busy. October wasnt the best month for Seraphina,Seraphina had 3 visits to hospital,two of which were seizure related because of underlying infection..the first being a urine infection which led into a chest infection as she aspirated whilst fitting and the second being a virus and chest infection.
Seraphina is also taking part in a trial to test a device for dealing with lots of aerophagia in Rett syndrome....a dry seal chest drain attached to her gastrostomy!...well the benefits are two-fold....she has reflux despite 3 fundoplications and so her gastrostomy needs to be on 'free drainage'all the time so that she has nothing to reflux...che chest drain collects this but also, it has a valve in so the air she swallows goes into the chest drain and is released via the valve on the top,so no more bile bag emptying :-)
Of course our local PCT had to throw their toys out of the pram about it because the chest drain wanst in her chest...but hey ho Im not really surprised,in the end it all comes down to money.
Some lovely news is that the Acorns lady and the lady from Scope managed to secure us a weekend away in the half term :)...it was SOOO needed as we hadnt been able to go on holiday and everyone was a bit frazzled.Was so nice to see the children enjoying themselves and having some 'normality'
Cue picure of Eve 'wearing a candyfloss moustache and beard courtesy of Butlins and a pooped Seraphina in the background lol :)
We also went to a farm where Seraphina fell in love with the Ponies and Donkeys and kept putting her hand out for them to lick :).I also took her on a bouncy castle...expecting her to be a bit overwhelmed when the others got on and started bouncing her....on the contrary the little daredevil started giggling and LOVED it !
We also got to see Orthopaedics finally after a 12 month wait...we couldnt get seen again locally as they were booked into the new year so we gave up and our surgeon in Sheffield referred there...we got seen in 4 weeks!!! (and they wonder why we dont move all services locally!).Well the pain in her hip I have been harping on about for months seems to be due to the fact that her left hip is slightly dislocated!...poor hunny and her tendons in the backs of her heels/calf are SOOO tight he has booked her for surgery on 30th November and serial casting too so she will have the plasters replaced every two weeks.
I have mixed feelings about this...I hate November SO much ater last year and the fact that she has to have surgery around the same time that she got so very very poorly last year chills me to the bone.I know its probably totally paranoid and no amount of worrying will change anything but I just cant help it..whenever I think about it its like an ice cold hand grabs my throat and chokes me.
As it is I feel like I am living this winter on a knife edge...every sniffle and I am watching her determined to do better this year at protecting her so that we dont have a repeat performance of last year.
The picture still floats in my mind of New Year and kissing my little sweetheart as she lay zoned out on Morphine and ketamine,wishing her happy new year and not knowing if I would ever see her open her eyes again. Even typing this makes my eyes prick with tears.
But she'll be fine,she has to be. I read the blog last night of a lovely lovely Christian lady...one whom i have never met but who gives me so much in the way of encouragement and comfort that I am not alone in my journey or feelings. She lost her absolutely beautiful little girl so Rett syndrome.I read her blog again last night in the early hours when my own little madam was being a night owl once again.Her post was so honest,her love for her daughter so tangible that I was reduced to tears reading it. I honestly dont think i could be as brave if i lost Seraphina...I know this will sound really quite bad as I have another 5 beautiful children who need me...but I honestly think that I would break in two forever if she passed away,I dont think I would be able to carry on,I love my girl with every single fibre of my being,more powerfully than I ever thought possible, I would walk over hot coals for her, I just dont think I could bear it.
On a more positive note ... the refund finally came back from Recare! and Promise dreams funded a wonderful touch screen computer for Seraphina and also some software from America made by Laureate learning.Its amazing!!! Seraphina knew what to do straight away, she grabbed my hand to help her touch the screen bless her but she finally has a way to try and communicate to us what she knows :)
I will post some pics and a video when I have downloaded them but just wanted to share the good news straight away :)
A funny pic to end this post with....little Seraphina technobod watching her brother on Club Penguin,well she doesnt want to miss anything lol!!
Seraphina is also taking part in a trial to test a device for dealing with lots of aerophagia in Rett syndrome....a dry seal chest drain attached to her gastrostomy!...well the benefits are two-fold....she has reflux despite 3 fundoplications and so her gastrostomy needs to be on 'free drainage'all the time so that she has nothing to reflux...che chest drain collects this but also, it has a valve in so the air she swallows goes into the chest drain and is released via the valve on the top,so no more bile bag emptying :-)
Of course our local PCT had to throw their toys out of the pram about it because the chest drain wanst in her chest...but hey ho Im not really surprised,in the end it all comes down to money.
Some lovely news is that the Acorns lady and the lady from Scope managed to secure us a weekend away in the half term :)...it was SOOO needed as we hadnt been able to go on holiday and everyone was a bit frazzled.Was so nice to see the children enjoying themselves and having some 'normality'
We also went to a farm where Seraphina fell in love with the Ponies and Donkeys and kept putting her hand out for them to lick :).I also took her on a bouncy castle...expecting her to be a bit overwhelmed when the others got on and started bouncing her....on the contrary the little daredevil started giggling and LOVED it !
We also got to see Orthopaedics finally after a 12 month wait...we couldnt get seen again locally as they were booked into the new year so we gave up and our surgeon in Sheffield referred there...we got seen in 4 weeks!!! (and they wonder why we dont move all services locally!).Well the pain in her hip I have been harping on about for months seems to be due to the fact that her left hip is slightly dislocated!...poor hunny and her tendons in the backs of her heels/calf are SOOO tight he has booked her for surgery on 30th November and serial casting too so she will have the plasters replaced every two weeks.
I have mixed feelings about this...I hate November SO much ater last year and the fact that she has to have surgery around the same time that she got so very very poorly last year chills me to the bone.I know its probably totally paranoid and no amount of worrying will change anything but I just cant help it..whenever I think about it its like an ice cold hand grabs my throat and chokes me.
As it is I feel like I am living this winter on a knife edge...every sniffle and I am watching her determined to do better this year at protecting her so that we dont have a repeat performance of last year.
The picture still floats in my mind of New Year and kissing my little sweetheart as she lay zoned out on Morphine and ketamine,wishing her happy new year and not knowing if I would ever see her open her eyes again. Even typing this makes my eyes prick with tears.
But she'll be fine,she has to be. I read the blog last night of a lovely lovely Christian lady...one whom i have never met but who gives me so much in the way of encouragement and comfort that I am not alone in my journey or feelings. She lost her absolutely beautiful little girl so Rett syndrome.I read her blog again last night in the early hours when my own little madam was being a night owl once again.Her post was so honest,her love for her daughter so tangible that I was reduced to tears reading it. I honestly dont think i could be as brave if i lost Seraphina...I know this will sound really quite bad as I have another 5 beautiful children who need me...but I honestly think that I would break in two forever if she passed away,I dont think I would be able to carry on,I love my girl with every single fibre of my being,more powerfully than I ever thought possible, I would walk over hot coals for her, I just dont think I could bear it.
On a more positive note ... the refund finally came back from Recare! and Promise dreams funded a wonderful touch screen computer for Seraphina and also some software from America made by Laureate learning.Its amazing!!! Seraphina knew what to do straight away, she grabbed my hand to help her touch the screen bless her but she finally has a way to try and communicate to us what she knows :)
I will post some pics and a video when I have downloaded them but just wanted to share the good news straight away :)
A funny pic to end this post with....little Seraphina technobod watching her brother on Club Penguin,well she doesnt want to miss anything lol!!
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