When she's not hacking up her dinner on my shoes and jacket, Emily's been reciting her new words to Sue and I.
As with most of her vocab, it's within the confines of her books and any real world application is still alluding us.
This morning, she's been reading her Dora The Explorer book and it takes place at night. All I've heard from her as she turns the pages is "moon" and "stars". Of course, if we go out on the next clear night and look up, I really don't envision her putting 2 and 2 together and making the real world application.
On the other hand, associating and understanding in ANY context is pretty good and I'm quite proud of her accomplishments in that regard.
The ongoing saga of being a ongoing father of two - one with autism and one who died for 20 minutes. From pre-birth, birth and through those difficult toddler years. It's definitely a life changing event going from singleton to parent.
Monday, 31 January 2011
Saturday, 29 January 2011
Vomit times
We went into town today for a number of reasons. Mainly that I had to get a new coat with a credit note Sue had (my Christmas gift wasn't the right one).
We went to a Mexican restaurant in Covent Garden for lunch and then I treated myself to a few minutes browsing in Fopp.
Then the day went DOWN HILL.
When I came to pay for my goods, I couldn't find Sue or Em anywhere. A quick call from Sue and I found them in the lift, along with a pool of sick courtesy of Em.
The good people of Fopp were incredibly understanding, and in hindsight, it was better in a little used lift instead of all over product they might actually be able to shift.
We dressed Em in my coat, I wore my new coat and we headed off.
Emily, obviously under the influence of some horrid stomach bug, did not limit her wretching to Fopp's lift. We also managed to get a 38 bus soiled, just outside of Victoria station. This time, my new coat was also victim to the guttural stream of delight (as was my current coat which Em was wearing at the time).
When we got home, thinking - foolishly in hindsight - that all was well, we now have half our settee drying by the radiator having had a cushion mopped down to get rid of the sick.
At times like these you really want to point blame and yell at someone. Especially when you're nice, expensive brand new blazer is yacked on and you've not even owned it for four hours.
Like anyone being ill, it's not Emily's fault and I find myself angry at fate or myself.
Of course, Sue and I are really only concerned with her staying hydrated and getting better. We don't really want her going to bed in her bed as choking on vomit can be quite lethal - as we just watched a character in Breaking Bad die that way.
Here's hoping our collective Sunday isn't as brutally horrific as today has been.
We went to a Mexican restaurant in Covent Garden for lunch and then I treated myself to a few minutes browsing in Fopp.
Then the day went DOWN HILL.
When I came to pay for my goods, I couldn't find Sue or Em anywhere. A quick call from Sue and I found them in the lift, along with a pool of sick courtesy of Em.
The good people of Fopp were incredibly understanding, and in hindsight, it was better in a little used lift instead of all over product they might actually be able to shift.
We dressed Em in my coat, I wore my new coat and we headed off.
Emily, obviously under the influence of some horrid stomach bug, did not limit her wretching to Fopp's lift. We also managed to get a 38 bus soiled, just outside of Victoria station. This time, my new coat was also victim to the guttural stream of delight (as was my current coat which Em was wearing at the time).
When we got home, thinking - foolishly in hindsight - that all was well, we now have half our settee drying by the radiator having had a cushion mopped down to get rid of the sick.
At times like these you really want to point blame and yell at someone. Especially when you're nice, expensive brand new blazer is yacked on and you've not even owned it for four hours.
Like anyone being ill, it's not Emily's fault and I find myself angry at fate or myself.
Of course, Sue and I are really only concerned with her staying hydrated and getting better. We don't really want her going to bed in her bed as choking on vomit can be quite lethal - as we just watched a character in Breaking Bad die that way.
Here's hoping our collective Sunday isn't as brutally horrific as today has been.
Labels:
ill
Tuesday, 25 January 2011
Clingy klingon
Lately Emily's been rather lovely-dovey and huggy-wuggy.
I understand all kids go through a clingy phase and this must be hers. However, at some points the constant neediness can be quite distracting.
The last couple of nights I've had to put a DVD on for her, so I can steal away long enough to put the dinner on. Although, she generally doesn't stay in her chair when she eats as she reaches out for a hug and before toppling over, I end up feeding her from my lap.
I know I shouldn't look a gift horse in the mouth, as when she's a moody hideous teenager I'll be wishing for any acknowledgement of my being, let alone a cuddle or a hug. It's just that too much is sometimes a little too much.
I understand all kids go through a clingy phase and this must be hers. However, at some points the constant neediness can be quite distracting.
The last couple of nights I've had to put a DVD on for her, so I can steal away long enough to put the dinner on. Although, she generally doesn't stay in her chair when she eats as she reaches out for a hug and before toppling over, I end up feeding her from my lap.
I know I shouldn't look a gift horse in the mouth, as when she's a moody hideous teenager I'll be wishing for any acknowledgement of my being, let alone a cuddle or a hug. It's just that too much is sometimes a little too much.
Labels:
development
Wednesday, 19 January 2011
Teething pains
Em was in quite a mood today and it really finally dawned on me when we got home that she probably IS teething.
When we got home, she was incredibly clingy and wouldn't let go of me to even get a drink. We were watching a Smurf movie (Smurfs and the Magic Flute if you care - and the animation was TERRIBLE) and I kept having to check to see if she was awake as she wasn't moving all that much.
Over the last few days she's become so used to having Calpol that as soon as she saw the eyedropper filled with the medication, she was eager to take it.
It's sad that she even needs to know what it's for.
About 20 minutes later, she got up from the setee, announced "bed" and proceeded to climb the stairs. About 10 minutes later, sans dinner, she was fast asleep.
God-bless you Calpol.
All the signs now point to her teething - the pink cheeks, the blood curdling screams at breakfast as I know assume her cereal was hitting some open nerve. I imagine the fever and the rash over the weekend were symptoms of this now, and not anything swine related.
I can't remember what teething felt like and if she's in this much pain, I'm quite glad that's true.
When we got home, she was incredibly clingy and wouldn't let go of me to even get a drink. We were watching a Smurf movie (Smurfs and the Magic Flute if you care - and the animation was TERRIBLE) and I kept having to check to see if she was awake as she wasn't moving all that much.
Over the last few days she's become so used to having Calpol that as soon as she saw the eyedropper filled with the medication, she was eager to take it.
It's sad that she even needs to know what it's for.
About 20 minutes later, she got up from the setee, announced "bed" and proceeded to climb the stairs. About 10 minutes later, sans dinner, she was fast asleep.
God-bless you Calpol.
All the signs now point to her teething - the pink cheeks, the blood curdling screams at breakfast as I know assume her cereal was hitting some open nerve. I imagine the fever and the rash over the weekend were symptoms of this now, and not anything swine related.
I can't remember what teething felt like and if she's in this much pain, I'm quite glad that's true.
Labels:
teething
Tuesday, 18 January 2011
Post paediatrician, back at square one
We had the developmental paediatrician appointment today and I have to say, it was a disappointment. We weren't expecting all our worries to melt away, but were hoping for more than what happened.
We sat there, and then went through the same thing we've done with everyone else we've seen - explaining what Emily can and can't do, she performed some tasks, etc.
The doctor then told us we would be seen in 4 - 6 months. Yeah, MONTHS. So much for any ongoing treatment, any follow up appointments.
They did rule out any physical issues and said that it was all developmental. Still, autism (in any part of the spectrum) couldn't be ruled out after only one visit and as the next visit isn't for another 1/2 year who knows what the hell they'll find.
To say I was disappointed on the way home is sugar coating it. Both Sue and I were quite devastated. Any faith I had in the NHS has had the final nail put through it today. We need to really come up with a plan B to get Emily's issues sorted out.
We sat there, and then went through the same thing we've done with everyone else we've seen - explaining what Emily can and can't do, she performed some tasks, etc.
The doctor then told us we would be seen in 4 - 6 months. Yeah, MONTHS. So much for any ongoing treatment, any follow up appointments.
They did rule out any physical issues and said that it was all developmental. Still, autism (in any part of the spectrum) couldn't be ruled out after only one visit and as the next visit isn't for another 1/2 year who knows what the hell they'll find.
To say I was disappointed on the way home is sugar coating it. Both Sue and I were quite devastated. Any faith I had in the NHS has had the final nail put through it today. We need to really come up with a plan B to get Emily's issues sorted out.
Labels:
development
Paediatric appointment today!
After months of waiting and an episode where we ALMOST paid £250 per HOUR for help, we're finally off to see the developmental paediatrician today at St. Helier's Hospital.
We're not expecting a silver bullet solution to Em's learning delays, but hopefully it's the beginning of a course of treatments or visits that will result in her improving dramatically.
Watch this space!
We're not expecting a silver bullet solution to Em's learning delays, but hopefully it's the beginning of a course of treatments or visits that will result in her improving dramatically.
Watch this space!
Labels:
development
Monday, 17 January 2011
Fever turns to rash
Sue and I MAY becoming those types of parents. You know the kind, every little problem is all of a sudden life threatening - her weekend fever MUST mean she has swine flu.
Today Emily woke up with a rash which was one of the questions NHS Direct asked us over the weekend when we phoned. I looked it up on the NHS Direct symptoms guide and tiny red pin prick rash was something they tried to rule out for meningitis.
So Emily's gone from almost (not really) having swine flu to now having meningitis.
NHS Direct feel it's probably whatever virus which caused the fever flailing around in its dying embers... or allergies. Although they did recommend she stay away from anyone with a distressed immune system.
I've already got a doctor's appointment booked for 11am, so I'm going to go down with her.
She's in really high spirits at the moment, although she's rather pale and thin from not really having eaten over the weekend.
I assume all is well and she'll be back with Helen by lunchtime.
UPDATE: Went to the doctor's at 11am and after a very brief review of Emily's symptoms, we got the all clear. It's just the last embers of the fever virus working their way out. Emily's still drained, listless and tired but she's definitely on the mend.
Today Emily woke up with a rash which was one of the questions NHS Direct asked us over the weekend when we phoned. I looked it up on the NHS Direct symptoms guide and tiny red pin prick rash was something they tried to rule out for meningitis.
So Emily's gone from almost (not really) having swine flu to now having meningitis.
NHS Direct feel it's probably whatever virus which caused the fever flailing around in its dying embers... or allergies. Although they did recommend she stay away from anyone with a distressed immune system.
I've already got a doctor's appointment booked for 11am, so I'm going to go down with her.
She's in really high spirits at the moment, although she's rather pale and thin from not really having eaten over the weekend.
I assume all is well and she'll be back with Helen by lunchtime.
UPDATE: Went to the doctor's at 11am and after a very brief review of Emily's symptoms, we got the all clear. It's just the last embers of the fever virus working their way out. Emily's still drained, listless and tired but she's definitely on the mend.
Related articles
- Emily DEFINITELY has the fever (bubbytimes.blogspot.com)
Labels:
ill
Saturday, 15 January 2011
Emily DEFINITELY has the fever
Emily stayed home with Sue yesterday as she wasn't feeling well.
When I got home, I found them both in bed feeling rather exhausted. Emily was incredibly HOT! You could have fried an egg on her, she was that warm.
We drip fed her Calpol and a few bits of food - blueberries, crisps ... the things she loves so we know she'd eat.
Around 2am I got awoken by Sue asking to help with Em. She wouldn't take her next dose of Calpol and wasn't cooling down. Her hands were hot, her feet were hot. It wasn't good.
We were on the phone on and and off with NHS Direct, those guardian angels of healthcare, until about 3am ruling out meningitis and going through the procedures we needed to follow - make sure she DOES take her medicine, keep the room cool for her, etc.
People get sick. People of all ages get sick. It's a fact of life. However, while we were on the phone trying to get to the bottom of Em's illness and find out what to do next, my entire brain was screaming "swine flu" for a number of reasons not least being an acquaintance of Sue's recently lost her 5 year old child to the virus on Christmas Day. I was trying to hold off my paranoia and let the nurse on the phone do her thing.
I still don't think Em's out of the woods, but at least she's taking fluids now (something she refused at 8 am this morning). She's lying in bed not moving, and occasionally singing lines from her songs. She's not in bad spirits, I just wish the same could be said for her body.
Related articles
- NHS Direct 'at breaking point': Flu patients waiting 2 days for help (dailymail.co.uk)
- Pneumonia tragedy of girl sent home by three doctors who told parents to give her calpol (dailymail.co.uk)
- Swine flu: Deaths double to 112 as parents of victim, 3, want all children to get vaccine (dailymail.co.uk)
- Swine flu: Doctor's daughter Lana Ameen, 3, too young for jab dies (dailymail.co.uk)
Labels:
ill
Friday, 14 January 2011
Emily's got the fever
I picked up Emily from Fennies last night and she was in some new clothes as I was told she was really warm.
She was quite quiet and listless last night and actually fell asleep WHILE I was making her dinner.
Through the night, Sue went to the loo and opened the door to Emily's shining face. An hour later, they both finally got back to sleep. This was 4am.
At 7:00am, I could hear Emily singing to herself, oblivious of the fact that she was awake three hours earlier.
When I went to get Emily she was so hot, I could have dried clothes on her.
Needless to say, she's staying home with Sue today.
There's been a lot of talk and horror stories about the flu lately, and someone Sue knows has lost a child to it already, so there's a bit of paranoia that's probably worth holding on to at the moment. Unlike other things in my life, Emily really isn't very replaceable so I need to make sure I keep hold of this model.
She was quite quiet and listless last night and actually fell asleep WHILE I was making her dinner.
Through the night, Sue went to the loo and opened the door to Emily's shining face. An hour later, they both finally got back to sleep. This was 4am.
At 7:00am, I could hear Emily singing to herself, oblivious of the fact that she was awake three hours earlier.
When I went to get Emily she was so hot, I could have dried clothes on her.
Needless to say, she's staying home with Sue today.
There's been a lot of talk and horror stories about the flu lately, and someone Sue knows has lost a child to it already, so there's a bit of paranoia that's probably worth holding on to at the moment. Unlike other things in my life, Emily really isn't very replaceable so I need to make sure I keep hold of this model.
Labels:
ill
Thursday, 13 January 2011
Assessed for help
Picking Em up tonight at Fennies, they gave me the "good news" that she's been assessed by the council workers and she has been referred on for further help for her development.
Sue and I are to meet with the people next week to discuss a plan of attack, but Fennies were quite optimistic that she'll get the help she needs, they'll be able to get guidance on how to help her and there'll be funding to be had so things shouldn't hurt too much, financially.
All this help, I just hope there is nothing actually wrong with Em. All this time Sue and I are kept going by the thought that she'll get sorted eventually. I really hope someone doesn't actually turn around at some point and say "actually..."
Sue and I are to meet with the people next week to discuss a plan of attack, but Fennies were quite optimistic that she'll get the help she needs, they'll be able to get guidance on how to help her and there'll be funding to be had so things shouldn't hurt too much, financially.
All this help, I just hope there is nothing actually wrong with Em. All this time Sue and I are kept going by the thought that she'll get sorted eventually. I really hope someone doesn't actually turn around at some point and say "actually..."
Labels:
learning
Tuesday, 11 January 2011
More interactivity verbally
It's been a good year so far for Emily.
She's coming on leaps and bounds in her development. I spy her occasionally reading a book or reciting a book and I can actually tell what book she is reciting, which is cool.
She's still not engaging Sue or I in conversation or even requests, apart from "read", but Sue been able to augment that by saying to Emily "read please..." to which Emily responds "Mummy".
Emily is also saying "face" quite a bit when we say it's time to "wash hands". Although she's not creating verbal dialogue, something upstairs is putting various terms together, which is good.
We've been watching this DVD developed by learning development people called "Sookie & Finn" and trying to emulate some of the ways they discuss everyday objects. Hopefully with this video, our interaction and further mental stimulation we're close to a massive break through.
She's coming on leaps and bounds in her development. I spy her occasionally reading a book or reciting a book and I can actually tell what book she is reciting, which is cool.
She's still not engaging Sue or I in conversation or even requests, apart from "read", but Sue been able to augment that by saying to Emily "read please..." to which Emily responds "Mummy".
Emily is also saying "face" quite a bit when we say it's time to "wash hands". Although she's not creating verbal dialogue, something upstairs is putting various terms together, which is good.
We've been watching this DVD developed by learning development people called "Sookie & Finn" and trying to emulate some of the ways they discuss everyday objects. Hopefully with this video, our interaction and further mental stimulation we're close to a massive break through.
Labels:
learning
Tuesday, 4 January 2011
New Year. 2011 here we are
It was nice having over a week off with Sue and Emily. Both parents got some excellent quality time with Emily.
Last time we had this much quality time was in October when we went to France. When we came back, Emily had made quite a decent amount of progress in her learning and development. She started using "read" to annoy any adult in earshot.
No such progress was made this time around, but she did shine in using her vocabulary. Well, shine for Emily. We visited with friends who have children of a similar age to Emily and they were comparatively scholarly in their speech etc, composing full sentences and actually making their needs and wants known, as opposed to licking their lips when thirsty and yelling "no" and flailing arms until you understood what exactly was needed.
Whatever progress Em is making, she's still behind what a 2.x year old should be doing. I keep hoping for the silver bullet that will let the words spill out, but sometimes I do wonder if that will ever be possible. I have to keep believing it is.
Last time we had this much quality time was in October when we went to France. When we came back, Emily had made quite a decent amount of progress in her learning and development. She started using "read" to annoy any adult in earshot.
No such progress was made this time around, but she did shine in using her vocabulary. Well, shine for Emily. We visited with friends who have children of a similar age to Emily and they were comparatively scholarly in their speech etc, composing full sentences and actually making their needs and wants known, as opposed to licking their lips when thirsty and yelling "no" and flailing arms until you understood what exactly was needed.
Whatever progress Em is making, she's still behind what a 2.x year old should be doing. I keep hoping for the silver bullet that will let the words spill out, but sometimes I do wonder if that will ever be possible. I have to keep believing it is.
Labels:
New Year's
Subscribe to:
Posts (Atom)