Ok, so I've had my holiday now and have decided to get cracking on this blog properly. So far I have only written about my life with the children, and I think that as they are such a huge part of my life and I am literally with at least one of them all the time I will make this blog entirely about them.
I have entitled this post Presley, and I intend to write about her as comprehensively as possible. I have been intending to write about her for a long time, and a lot of people keep saying I should because she is a comedy genius (unintentionally).
Firstly, an introduction to the little girl herself. Her full name is Presley Erica Mary Fuller, of which she is very proud. Any fears I had about saddling some poor child with an unusual name have been entirely abated by Presley's enthusiasm for hers. She is 5 (another reason to be pleased with herself) and, although I do say it myself, outstandingly beautiful. Every child has reasons for why they are special, and Presley certainly has a lot. Not long after being born, Presley developed a birthmark at the base of her spine. This grew very big although it is now diminishing. We went to see a dermatologist who told us that it would go, but he had concerns about her, because a birthmark that starts in that area can denote underlying problems. To cut a long story short after a lot of scans and appointments, when Presley was 14 months old we found out she had spina bifida. Obviously we were quite shell-shocked by this, especially as she had been so quick to crawl and walk (6mths and 10mths). We were told that her spinal cord was tethered to the base of her spine, and would need to be operated on at some point otherwise she would at some point develop serious complications. When she was 2 Presley decided she would no longer wear nappies, and that was the first time we noticed a problem. Basically she had no sensation whatsoever in her bladder or bowels. We managed by taking her to the toilet regularly but she still had accidents every day, maybe 4 or 5 on a good day and 10 or upwards on a bad.
In Feb 09 she went into frenchay hospital to have her spinal cord de-tethered. she had to then lie flat for a week afterwards and wear a support belt for a further 6 weeks. As she is normally incredibly active it was a very hard time for her, but she was so brave and tolerant. When she started to get up the nurses removed the catheter she had in only to discover she couldn't wee. There followed an agonising 9 hours for Presley during which she swelled up like a balloon and cried desperately from the pain. Eventually they put another catheter in and she was comfortable again. They tried again the next day, this time leaving her for 15 hours before giving in. Eventually we were sent home from hospital with intermittent catheters for her, and that is how it has been since. She has very minimal bladder sensation, and will only notice she needs to go when she is already slightly wet. If she is distracted or laughing a lot then she will wet herself. Her bowels have improved to the point that she will only have accidents maybe 2 or 3 times a week, but she still usually wets herself about 3 times a day, worse if she has an infection or is feeling low. Obviously this has huge implications for her, she has a carer at school and can't go to parties or friends houses without wearing a pull-up, which as she gets bigger she doesn't want to do. Parks and play areas are a nightmare for us, as she gets carried away and will not notice that she is wet until she is soaked. Her spinal cord is gradually re-tethering itself so she does occasionally trip or fall as the strength in her legs diminish. One day she will need another operation on her back. But throughout all of this she remains happy and positive. She always looks on the bright side of life, and keeps me smiling. Phew. So that's the hard stuff out the way, onto the happier stuff.
I have never met a child with more enthusiasm for living than Presley. She has her moments, when she can be downright stubborn, rude and even aggressive (she is very much like me), but on the whole she is brilliant. I miss her terribly since she started school, but it has been truly fascinating to watch this little person develop before my very eyes. She is a fantastic friend, she has some really lovely girls and boys in her class (their parents should be very proud) and I love watching her interact with them. She adores reading and writing and is, by all accounts very bright. She has just started to read the easier Roald Dahl books- The twits etc, and the joy we get from them is just amazing. I love it when she curls up next to me and just reads. She also loves to draw and write stories. She says that when she grows up she wants to be an illustrator and a Doctor. Interesting combination. She sits at the kitchen table while I'm cooking and draws, cuts and sticks the whole time. All the while keeping up a running commentary which I've learnt to tune in and out of!
Presley loves the great outdoors. She is very close to my Mum, and they grow countless fruit and vegetables in Mum's garden together. I've offered to grow some at home but she won't have it, that is her and grandmas 'thing'. We walk to school and she always stops to pick daisies or buttercups, or comment on some flowers or birds singing. She is very girly in some ways- always wearing pink girly things and she has 3 jewellery boxes crammed full, but she always knows exactly which necklace or rings will go with which outfit. At the time of writing this she owns 11 princess dresses and has plans to extend her collection when we go back to Disneyland in the summer. All this, and yet she loves playing rough and tumble, climbing trees , making a mess and just generally being active. She doesn't let a pretty dress stand in the way of leapfrogging a post.
I always wanted a girl, and she is everything I could ever have hoped for and so much more.
The best thing about her though, as I mentioned at the start of this post, is that she is unintentionally hilarious. I am going to list some of her more memorable quotes, and add to them whenever she comes out with another classic. Hope you enjoy them as much as we have!
On way home from school.
Me- What did you have for snack today?
P- Lemon.
Me- Lemon? Don't you mean Melon?
P- Lemon, Melon, you know what I mean Mummy. Its the same letters, just a slightly different word.
On a cold, grey February morning as we open the front door.
P- What a glorious natural day. Could just do with a bit more warmth.
4 hours after I have given birth to Chester, when she came to visit.
P- Now that you've had that baby Mummy, why isn't your tummy flat? Its still all fat.
Last week (Chester is now 4months old) as I got out the shower.
P- Your tummy looks just like it did when Chester was growing inside.
Walking to school.
P- Look at theses roses Mummy. What outstanding blooms!
To me after I told her and Orson to tidy up.
P- You are treating me and Orson as your servants Mummy, and I don't think that is very nice or very appropriate. Now go away and come back when you can be civilised.
As I turn the computer on.
P-Can I have google earth on please?
Me- Yes, what do you want to look for?
P- I want to look for Australia
Me- Oh, Grandads Mummy lives in Australia you know.
P- Really, how interesting.
Me- We could look for her house if you want.
P- Not really Mummy, I was being a bit narsastic (think she means sarcastic!)
To Orson while playing.
P- Orson, you are going to be called Nurse kitty OK?
O- yes.
P- Orson?
O- Yes?
P- What did you answer for? I've just told you you're called Nurse Kitty.
O- Sorry.
And so it goes on...!
I have entitled this post Presley, and I intend to write about her as comprehensively as possible. I have been intending to write about her for a long time, and a lot of people keep saying I should because she is a comedy genius (unintentionally).
Firstly, an introduction to the little girl herself. Her full name is Presley Erica Mary Fuller, of which she is very proud. Any fears I had about saddling some poor child with an unusual name have been entirely abated by Presley's enthusiasm for hers. She is 5 (another reason to be pleased with herself) and, although I do say it myself, outstandingly beautiful. Every child has reasons for why they are special, and Presley certainly has a lot. Not long after being born, Presley developed a birthmark at the base of her spine. This grew very big although it is now diminishing. We went to see a dermatologist who told us that it would go, but he had concerns about her, because a birthmark that starts in that area can denote underlying problems. To cut a long story short after a lot of scans and appointments, when Presley was 14 months old we found out she had spina bifida. Obviously we were quite shell-shocked by this, especially as she had been so quick to crawl and walk (6mths and 10mths). We were told that her spinal cord was tethered to the base of her spine, and would need to be operated on at some point otherwise she would at some point develop serious complications. When she was 2 Presley decided she would no longer wear nappies, and that was the first time we noticed a problem. Basically she had no sensation whatsoever in her bladder or bowels. We managed by taking her to the toilet regularly but she still had accidents every day, maybe 4 or 5 on a good day and 10 or upwards on a bad.
In Feb 09 she went into frenchay hospital to have her spinal cord de-tethered. she had to then lie flat for a week afterwards and wear a support belt for a further 6 weeks. As she is normally incredibly active it was a very hard time for her, but she was so brave and tolerant. When she started to get up the nurses removed the catheter she had in only to discover she couldn't wee. There followed an agonising 9 hours for Presley during which she swelled up like a balloon and cried desperately from the pain. Eventually they put another catheter in and she was comfortable again. They tried again the next day, this time leaving her for 15 hours before giving in. Eventually we were sent home from hospital with intermittent catheters for her, and that is how it has been since. She has very minimal bladder sensation, and will only notice she needs to go when she is already slightly wet. If she is distracted or laughing a lot then she will wet herself. Her bowels have improved to the point that she will only have accidents maybe 2 or 3 times a week, but she still usually wets herself about 3 times a day, worse if she has an infection or is feeling low. Obviously this has huge implications for her, she has a carer at school and can't go to parties or friends houses without wearing a pull-up, which as she gets bigger she doesn't want to do. Parks and play areas are a nightmare for us, as she gets carried away and will not notice that she is wet until she is soaked. Her spinal cord is gradually re-tethering itself so she does occasionally trip or fall as the strength in her legs diminish. One day she will need another operation on her back. But throughout all of this she remains happy and positive. She always looks on the bright side of life, and keeps me smiling. Phew. So that's the hard stuff out the way, onto the happier stuff.
I have never met a child with more enthusiasm for living than Presley. She has her moments, when she can be downright stubborn, rude and even aggressive (she is very much like me), but on the whole she is brilliant. I miss her terribly since she started school, but it has been truly fascinating to watch this little person develop before my very eyes. She is a fantastic friend, she has some really lovely girls and boys in her class (their parents should be very proud) and I love watching her interact with them. She adores reading and writing and is, by all accounts very bright. She has just started to read the easier Roald Dahl books- The twits etc, and the joy we get from them is just amazing. I love it when she curls up next to me and just reads. She also loves to draw and write stories. She says that when she grows up she wants to be an illustrator and a Doctor. Interesting combination. She sits at the kitchen table while I'm cooking and draws, cuts and sticks the whole time. All the while keeping up a running commentary which I've learnt to tune in and out of!
Presley loves the great outdoors. She is very close to my Mum, and they grow countless fruit and vegetables in Mum's garden together. I've offered to grow some at home but she won't have it, that is her and grandmas 'thing'. We walk to school and she always stops to pick daisies or buttercups, or comment on some flowers or birds singing. She is very girly in some ways- always wearing pink girly things and she has 3 jewellery boxes crammed full, but she always knows exactly which necklace or rings will go with which outfit. At the time of writing this she owns 11 princess dresses and has plans to extend her collection when we go back to Disneyland in the summer. All this, and yet she loves playing rough and tumble, climbing trees , making a mess and just generally being active. She doesn't let a pretty dress stand in the way of leapfrogging a post.
I always wanted a girl, and she is everything I could ever have hoped for and so much more.
The best thing about her though, as I mentioned at the start of this post, is that she is unintentionally hilarious. I am going to list some of her more memorable quotes, and add to them whenever she comes out with another classic. Hope you enjoy them as much as we have!
On way home from school.
Me- What did you have for snack today?
P- Lemon.
Me- Lemon? Don't you mean Melon?
P- Lemon, Melon, you know what I mean Mummy. Its the same letters, just a slightly different word.
On a cold, grey February morning as we open the front door.
P- What a glorious natural day. Could just do with a bit more warmth.
4 hours after I have given birth to Chester, when she came to visit.
P- Now that you've had that baby Mummy, why isn't your tummy flat? Its still all fat.
Last week (Chester is now 4months old) as I got out the shower.
P- Your tummy looks just like it did when Chester was growing inside.
Walking to school.
P- Look at theses roses Mummy. What outstanding blooms!
To me after I told her and Orson to tidy up.
P- You are treating me and Orson as your servants Mummy, and I don't think that is very nice or very appropriate. Now go away and come back when you can be civilised.
As I turn the computer on.
P-Can I have google earth on please?
Me- Yes, what do you want to look for?
P- I want to look for Australia
Me- Oh, Grandads Mummy lives in Australia you know.
P- Really, how interesting.
Me- We could look for her house if you want.
P- Not really Mummy, I was being a bit narsastic (think she means sarcastic!)
To Orson while playing.
P- Orson, you are going to be called Nurse kitty OK?
O- yes.
P- Orson?
O- Yes?
P- What did you answer for? I've just told you you're called Nurse Kitty.
O- Sorry.
And so it goes on...!
Wonderful! Ben comes out with some crackers too! I really should list those down.
ReplyDeleteThank you for sharing!
Gosh, I hope you don't mind, but I might have to write about my two on my blog one day... just to keep a record of them and what they're up to.
I don't mind, I think that its important that we do. I'm hoping to show this to her when she's older. And when you have hilarious children(as we do!) it cheers others to read of their unintentional comedy genius!!
ReplyDelete