Thursday, 23 October 2008
The hair
You can't really see it properly in the pictures I've just posted of Ben. It is wispy at the sides but has cute little curls at the nape of his neck, so I've just kept it. He has not even had a trim in his entire life. I get hassle all the time from my mam and sister, and brother actually, to cut it. Last week when I took him to see Tony at work, 4 different people commented isn't *she* lovely. Even though he was top to toe in blue. I don't want to cut it!! He doesn't look like a girl, does he??
My little dormouse
Katie had her first performance event today. Her school had an autumn harvest assembly and the younger kids all dressed up and sang songs. Katie's class were dormice. She was so cute. All day she kept saying "you'll come back to see me be a dormouse, yes?". I assured her I would. Her face was a picture when she saw me. I love when she is like that.
Compare that to my little grumpy guts ;-)
I'm not sure what was wrong with him, I think he was just tired as it was 2.15. He wouldn't look at me or respond to any cajoling. He's still cute though, even though he was a sourpuss.
Compare that to my little grumpy guts ;-)
I'm not sure what was wrong with him, I think he was just tired as it was 2.15. He wouldn't look at me or respond to any cajoling. He's still cute though, even though he was a sourpuss.
Tuesday, 21 October 2008
Feeding clinic
I had an appointment with Jack's school today at the "feeding clinic". Basically, he is little Mr Independent these days and will not accept any help from anyone for anything. Getting him ready for school in the morning is a nightmare. Even though he has the will, he obviously doesn't have the motor skills to do it himself so it is a constant battle. This transfers to his "feeding". He very vehemently expresses that he only wants to do it himself. He only really has the use of his right hand so he maybe gets a teaspoon or two and still only yoghurt. His swallow leaves a lot to be desired and he still has pretty major tongue thrust. Drinking is non existant.
Anyway, the whole point is that they are saying the longer he remains tube fed, the less likely he will be to come off it. He is 5 next month and has been tube fed since birth. There is no medical explanation, he has just not made any natural progression, so we are looking at years to even get to the point of a possibility where he may take enough orally to reduce his tube feedings or come off it. Pesimistic me agrees with the speech therapist/paediatrician that he has missed the learning window (infancy) so I really don't know what will happen. I hate that tube, I really really do.
Anyway, the whole point is that they are saying the longer he remains tube fed, the less likely he will be to come off it. He is 5 next month and has been tube fed since birth. There is no medical explanation, he has just not made any natural progression, so we are looking at years to even get to the point of a possibility where he may take enough orally to reduce his tube feedings or come off it. Pesimistic me agrees with the speech therapist/paediatrician that he has missed the learning window (infancy) so I really don't know what will happen. I hate that tube, I really really do.
Wednesday, 15 October 2008
Katie - ism's
K - Mammy, chocolate milk is very good for me you know...
Me - is that right?
Me - called her Ben's nickname
K - I'm not Bobo, I'm a girl!
K (excited) - I have an idea in the fridge!
Me - in the fridge?
K - yes, come, look, in the fridge
(Go to the fridge)
K - there, on the shelf, that chocolate
Me - ahhh.
K - Mammy, you can just tidy my toys for me. Come on, help yourself up.
:)
Me - is that right?
Me - called her Ben's nickname
K - I'm not Bobo, I'm a girl!
K (excited) - I have an idea in the fridge!
Me - in the fridge?
K - yes, come, look, in the fridge
(Go to the fridge)
K - there, on the shelf, that chocolate
Me - ahhh.
K - Mammy, you can just tidy my toys for me. Come on, help yourself up.
:)
Sunday, 12 October 2008
Nemo on Ice
We took the kids to see Disney's Nemo on Ice today. We managed to get some reduced rate tickets through Down Syndrom North East, otherwise I would not have chanced that Jack would behave if I'd had to pay full price.
He didn't like while we waited to get our tickets checked, didn't like all the people, didn't like all the way overpriced merchandise (yeah, I still got suckered in and bought Katie a flashing Nemo light thing), and then when it started he screamed and kicked for 20 minutes. The background noise was actually really loud, but I'm hoping the parents in that section were a little more forgiving as DSNE must have bought that whole block.
When he did stop crying, he really enjoyed it, so this is one of the first times we've managed to do a family thing like this!
The kids were so cute, there was this toddler stuffing candy floss in his mouth, it was hilarious. And a teenager in front of us when Nemo and Marlin were reunited was so excited.
Jack is getting worse in his behaviour in some ways and a little *tiny* bit better in others, so hopefully we can hang in there until it works itself out. Been 3 years now, but you never know ;-)
He didn't like while we waited to get our tickets checked, didn't like all the people, didn't like all the way overpriced merchandise (yeah, I still got suckered in and bought Katie a flashing Nemo light thing), and then when it started he screamed and kicked for 20 minutes. The background noise was actually really loud, but I'm hoping the parents in that section were a little more forgiving as DSNE must have bought that whole block.
When he did stop crying, he really enjoyed it, so this is one of the first times we've managed to do a family thing like this!
The kids were so cute, there was this toddler stuffing candy floss in his mouth, it was hilarious. And a teenager in front of us when Nemo and Marlin were reunited was so excited.
Jack is getting worse in his behaviour in some ways and a little *tiny* bit better in others, so hopefully we can hang in there until it works itself out. Been 3 years now, but you never know ;-)
Wednesday, 8 October 2008
Ok, that was bad.
How awful to have gone so long without posting. Things have been kind of hectic, plus I haven't really felt like writing anything.
I know I said it last time, but I will try from now to keep up.
Some of the things I should have blogged about in the past couple of months -
Paris was wonderful. It was lovely to spend time alone with Tony. We did a lot of walking, but had so many sights to see, it was marvellous.
Unfortunately, Tony's mam passed away in mid August. That was pretty awful for everyone and there will need to be an inquest into her death next year as initial coroner report suggests the hospital/surgery may bear the blame for mucking up on her surgery and care. She'd had a blood clot in her leg in July which was operated on and then there were weeks of no action and a second surgery the day before she died where it looks like they did something they shouldn't have :(
We took all the kids to Chester Zoo. That was "interesting". Not as bad as it could have been with Jack's outbursts, but still some stressful times.
Jack went back to school, full time! Hurray, for both of us ;-)
He has made a lot of progress with his communication over the school break and we've been working with him physically, so he can now just about stand up if we hold his hands and give him a little pull. Not so much weight bearing, he is still *very* weak, but he is at least making efforts.
Katie began nursery school in the afternoons. It went from 2 weeks of "ok, bye mammy" to "I need you, I don't want to go, I miss you" and many tears! She has been slowly getting better so hopefully will be ok soon.
Ben restarted active treatment for his talipes as his feet still aren't straight and he is almost 20 months now and still unable to stand unassisted or walk. He was in plaster casts, changed each week, for 3 weeks on both legs up to his thighs :( This then got changed to knee length casts and can you believe, he escaped them!!!! Must have just kept working his feet back and forward until he got his heel/ankle out. They weren't loose either, so I have no idea how he did it. That's why nothing is working for him, because he's Houdini! He's back in his shoes/brace and not liking that, until we get in to see the consultant. We're just stuck because he's still a bit young for the surgical treatment they are looking at and in the meantime, without his brace, his feet just turn and he stands on the outside edge of his feet and keeps going over on them so can't weight bear.
I have kept up with my running and CRAZILY entered the Edinburgh MARATHON next May. The furthest I've run without stopping is 14.5 miles so I need some serious training over the winter. Which brings me onto... I did my first official half marathon on Sunday gone, and what an event for my first. The Great North Run, biggest event in the world with 52,000 entrants!!! At the time I didn't appreciate just how fantastic it was, especially over the last few miles uphill, it was tough, but looking back, it was really something else. Phenomenal race with amazing spectator support. My official time was 1:58:28. I'm hoping I'll be further up the field next year as I was dodging a lot of people. I got under my target of 2 hours, but was hoping for closer to 1:55. When I finished I panicked - "and I have to run this distance immediately again for the marathon??!!"
I think those are the major highlights.
I know I said it last time, but I will try from now to keep up.
Some of the things I should have blogged about in the past couple of months -
Paris was wonderful. It was lovely to spend time alone with Tony. We did a lot of walking, but had so many sights to see, it was marvellous.
Unfortunately, Tony's mam passed away in mid August. That was pretty awful for everyone and there will need to be an inquest into her death next year as initial coroner report suggests the hospital/surgery may bear the blame for mucking up on her surgery and care. She'd had a blood clot in her leg in July which was operated on and then there were weeks of no action and a second surgery the day before she died where it looks like they did something they shouldn't have :(
We took all the kids to Chester Zoo. That was "interesting". Not as bad as it could have been with Jack's outbursts, but still some stressful times.
Jack went back to school, full time! Hurray, for both of us ;-)
He has made a lot of progress with his communication over the school break and we've been working with him physically, so he can now just about stand up if we hold his hands and give him a little pull. Not so much weight bearing, he is still *very* weak, but he is at least making efforts.
Katie began nursery school in the afternoons. It went from 2 weeks of "ok, bye mammy" to "I need you, I don't want to go, I miss you" and many tears! She has been slowly getting better so hopefully will be ok soon.
Ben restarted active treatment for his talipes as his feet still aren't straight and he is almost 20 months now and still unable to stand unassisted or walk. He was in plaster casts, changed each week, for 3 weeks on both legs up to his thighs :( This then got changed to knee length casts and can you believe, he escaped them!!!! Must have just kept working his feet back and forward until he got his heel/ankle out. They weren't loose either, so I have no idea how he did it. That's why nothing is working for him, because he's Houdini! He's back in his shoes/brace and not liking that, until we get in to see the consultant. We're just stuck because he's still a bit young for the surgical treatment they are looking at and in the meantime, without his brace, his feet just turn and he stands on the outside edge of his feet and keeps going over on them so can't weight bear.
I have kept up with my running and CRAZILY entered the Edinburgh MARATHON next May. The furthest I've run without stopping is 14.5 miles so I need some serious training over the winter. Which brings me onto... I did my first official half marathon on Sunday gone, and what an event for my first. The Great North Run, biggest event in the world with 52,000 entrants!!! At the time I didn't appreciate just how fantastic it was, especially over the last few miles uphill, it was tough, but looking back, it was really something else. Phenomenal race with amazing spectator support. My official time was 1:58:28. I'm hoping I'll be further up the field next year as I was dodging a lot of people. I got under my target of 2 hours, but was hoping for closer to 1:55. When I finished I panicked - "and I have to run this distance immediately again for the marathon??!!"
I think those are the major highlights.
Thursday, 7 August 2008
Me in London
Look at those white legs! My arms usually get a lot of sun with running... my legs - they're usually kept covered ;-)
Ben's update
I was panicking about running 7 minutes late for his appointment at 11.45 today. Trying to get 3 kids out of the door and a 10-15 minute walk will do that. Got him checked in, made our way to the clinic and they had up on the board that the consultant was approx 1 hour behind. Noooo! I've mentioned a time or two how Jack is when he is out, no fun! I had no money or anything to buy the kids a drink/snack. At 1.30 (!!!!!!!!!) we get called in, I was ready to explode.
Not a great day. He spent quite a while feeling his feet and I suppose checking where everything is internally (tendons, etc) and says we are literally back to square one. He says even with an extensive surgery now he might not be fully correctable so he wants to begin the treatment again. I was expecting to go in and be told we'll be going for a tendon transfer op so I was gutted.
As we're away over the weekend, I'll have to ring to check availability next week. He won't get in any physio help because there will be no point... starting treatment again means he has to go back into plaster casts, both legs, up to top of his thighs :(. He hasn't been in casts since last year so I don't know how he'll deal with that.
That will be weekly cast changes for up to 3 months (his next appointment) and then probably another tenotomy op on each heel (cut the tendon). Then more casts for 6 weeks and see where he is from then. This was all supposed to be fixed. Any clubfoot website you look at gives you the "this is the most common congenital birth defect, easily correctable, blah blah blah". Not my kids :(
If that is the plan he's going to into January before he even gets all the casts off and he's 2 in February. If his feet are still not straight, what does that mean for his development? I can't imagine how this is going to affect him at this age (the loss of mobility as he'll probably not be able to crawl easily with them on).
Anyway, that doesn't change the fact that he is the most adorable little tyke!
I'll post more of these mud pictures later, lol. All I can say back turned for literally 20 seconds and this was the result, but this shows why he can't stand/walk currently.
Not a great day. He spent quite a while feeling his feet and I suppose checking where everything is internally (tendons, etc) and says we are literally back to square one. He says even with an extensive surgery now he might not be fully correctable so he wants to begin the treatment again. I was expecting to go in and be told we'll be going for a tendon transfer op so I was gutted.
As we're away over the weekend, I'll have to ring to check availability next week. He won't get in any physio help because there will be no point... starting treatment again means he has to go back into plaster casts, both legs, up to top of his thighs :(. He hasn't been in casts since last year so I don't know how he'll deal with that.
That will be weekly cast changes for up to 3 months (his next appointment) and then probably another tenotomy op on each heel (cut the tendon). Then more casts for 6 weeks and see where he is from then. This was all supposed to be fixed. Any clubfoot website you look at gives you the "this is the most common congenital birth defect, easily correctable, blah blah blah". Not my kids :(
If that is the plan he's going to into January before he even gets all the casts off and he's 2 in February. If his feet are still not straight, what does that mean for his development? I can't imagine how this is going to affect him at this age (the loss of mobility as he'll probably not be able to crawl easily with them on).
Anyway, that doesn't change the fact that he is the most adorable little tyke!
I'll post more of these mud pictures later, lol. All I can say back turned for literally 20 seconds and this was the result, but this shows why he can't stand/walk currently.
Wednesday, 6 August 2008
Really shocking
I've slacked on this for far too long, things have just been tough here.
I am promising to get back to blogging. I have not been in a happy place.
Tony and I are going to Paris on Saturday until Tuesday though. I cannot wait. It will be the first time I have been abroad since 2003! This is going to be really great. Sort on an early anniversary (9th September) trip as 3 more weeks and the kids will be in school. Jack full time and Katie every afternoon. Can't wait for that too ;0
Ben sees his consultant tomorrow. We'll find out whether he needs more surgery and hopefully when it will be as he is still unable to stand or walk. I'm going to push for some physiotherapy for him too as no-one is helping us and he's over 17mo now.
I am promising to get back to blogging. I have not been in a happy place.
Tony and I are going to Paris on Saturday until Tuesday though. I cannot wait. It will be the first time I have been abroad since 2003! This is going to be really great. Sort on an early anniversary (9th September) trip as 3 more weeks and the kids will be in school. Jack full time and Katie every afternoon. Can't wait for that too ;0
Ben sees his consultant tomorrow. We'll find out whether he needs more surgery and hopefully when it will be as he is still unable to stand or walk. I'm going to push for some physiotherapy for him too as no-one is helping us and he's over 17mo now.
Sunday, 6 July 2008
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