Friday, February 26, 2010

Mummy Time!!!

This week our photography class went on an excursion.  It was great fun - the first time I have used my mind creatively in a long while (other than creatively avoiding tantrums/ER visits/people who piss  me off...).

Even though I am still a complete beginner in terms of photography, it was so much fun playing around with different settings on the camera and seeing the different effects it produced.  I still took way too many bad photos but am learning heaps and having a great time.

Things I have learnt so far...
1. My world view is - literally - off kilter...




Audrey wanted a photo of the bridge, and Emma wanted the Opera House.  I think what you can see in both of these is my balance disorder!!  Because of my Menieres I have shocking balance - and it often comes out in photos that seem perfectly on the level to me when I'm taking them - but on closer inspection are on quite an angle (these are actually the least off kilter of the shots too!).

2. Watch out for your own shadow...


I love that the dirty grey footpath looks golden in this light... I just didn't realise my own shadow was in the picture!


3. Trees are fun...



Exposure Compensation is REALLY fun...


PS - None of these have been photoshopped except to reduce the image size for the web.

Wednesday, February 24, 2010

Special Exposure Wednesday: Rock Chick

Are your children - in general - quiet or loud?

Mine are loud.  Recently Miss Ashlea has become the loudest.  She was in full voice in the bath tonight - not even singing really, just enjoying the sound of her own loud yowling.

 

  

  

She's even got the right look with all that crazy hair.

Don't forget to check out all the other great Special Exposure Wednesday photos here.

Sunday, February 21, 2010

Happy Blogaversary to Me!

Today is my 1 year blogaversary (yes that is another made up word - blog anniversary in case you're wondering).

When I started this blog (which I had been thinking of for awhile...) Ashlea had just started crawling.  It is hard now to imagine her unable to crawl - even though we did have a small reminder of that after the swine flu shot.  She just has so much freedom now to get around and explore - it seems unbelievable that once she was completely immobile.  Unbelievable in a GOOD way of course, seeing as for a long time it seemed unbelievable that she would become mobile.

A big thank you to all who read my little blog regularly - I love youse all.  I have made some great blogging friends over the last year - some who I have more in common with than my real life friends.  It has been great sharing experiences with all of you - most of you also live in Special Needs Land and really 'get it' when I rant or rave about something.  That support and understanding is amazing.

And with that, on to today's rant, just because I know you'll all 'get it'... 

The scene...a quiet church building.  Full of people - all eyes on the front where the children's minister is talking to the kids.

A mother sits in the front right hand pew with her 3 children, one of whom is in a wheelchair (which is why they're at the front near the only wheelchair accessible door).  She decides foolishly to PEG feed her child before the children go out for Noah's (Sunday School).  She has done this many times before and quickly and quietly starts feeding the child.

But then, the silence is broken by a loud noise from the front.

The child, startled, lurches to the side in an attempt to throw herself out of her chair.  She is now half hanging out of her wheelchair (on a 90 degree angle) and wailing LOUDLY.  The force of her cries pushes the milk back up her feeding tube - which is still attached - and it starts to spill over the top.

Picture the mother now trying to subtly wheel the screaming, sideways, milk-spurting child out of the church.


Ah, the joys...

Friday, February 19, 2010

Friday Five...

1.  Is it a full moon?  I have been SO irritable lately.  Everything is driving me crazy!  I think part of it stems from the grief I was talking about the other week.  The sad phase has passed for now and I'm just left feeling pissed off.  I'm not 'big picture' angry and thinking 'Why do I have a child with a disability?'.  I am 'little picture' pissed off.
  • Pissed off that its a hassle getting 3 children and a wheelchair in and out of the car every day for school and preschool drop offs. 
  • Pissed off that I have to spend so much time at appointments, which means the housework and washing backs up (which further pisses me off) and means I'm tired all the time
  • Pissed off that it is only week 4 of the school term and that means it is 6 weeks until school holidays
  • Pissed off at my children's behaviour
  • Really pissed off when I see myself mirrored in my children's behaviour.
  • Another thing that is really pissing me off is that our church is having a weekend away shortly.  It is not the weekend away itself that pisses me off, it is how difficult it is for us to participate in it.  They are having it at a wheelchair accessible venue, but that is the least of our difficulties.  Having to deal with an Ashlea meltdown in front of a bunch of people we harldy know (there are heaps of new people at church) is far more stressful than any phsyical access.  For some reason this weekend away has really unsettled me.  I would like to go.  I know with a lot of effort we could go.  I just don't feel that I have that kind of energy at the moment.  I feel like I would spend the whole time sticking out like a sore thumb and having to explain our situation or Ashlea's behaviour to people.  I already have school and preschool for that - I can't do it on my weekend too.
Sorry about that - just needed to have a little rant.  I try not too whinge too much on this blog (or in real life - although maybe some people may find that surprising!).  I am not a fan of whingers and try not to be one.  But I do feel better for getting that off my chest.

2.  No news on the car or the wheelchair. 

3. Ashlea continues to make slow progress after the swine flu vaccination that went wrong.  She is now crawling really well - not back to 100% but getting pretty close.  Still no W-sitting - although she is starting to 'frog' sit - on all fours but rocked back on her hind legs...like a frog.  Not much weight bearing on her legs yet though.  We see the physio on Monday.

4.  I have invited ALL the parents from Emma's class to my house for morning tea next week.  Am I crazy???.

5.  Today I actually took some photos on my camera using the manual settings.  Its very exciting to understand how it all works (well, some of the basics anyway).  For my photography course next week we are going on a night shoot in the city which should be great fun.  Anyway, here are a couple of today's photos...you will notice that not all of my subjects like to co-operate, so this is the best I could get.  Acutally none of my subjects like to co-operate.  Ashlea tries to crawl all over me while yelling "take a picture", Emma pulls faces and Audrey refuses to look at the camera unless bribed with chocolate - all of this is captured in the pictures below...


 

  

  

 

Wednesday, February 17, 2010

Twinteraction

You all know I love a bit of twinteraction (that's my new term for twin interaction in case you're wondering).

Here are Audrey and Ashlea playing the piano together - sorry for the quality I just took the pics quickly on my phone.






There was another lovely moment of twinteraction at preschool yesterday.  Ashlea wanted to look at the climbing tunnel but was a bit scared, so she said "with Audrey".  SO cute - that is the first time she has ever asked for Audrey to do something with her.

Audrey's response?

"I'm too busy"

Audrey came over in the end and went through the tunnel.  When we got Ashlea down near the tunnel instead of wanting to crawl through it she freaked out.  But hey, who needs to crawl through a tunnel when you've got a twin who'll do it for you???

Monday, February 15, 2010

So near and yet so far...

Today we went to pick up Ashlea's new wheelchair.  I wasn't hugely excited "just in case" it needed some modifications and we didn't get to take it home today...

Oh My Goodness - I have no idea how what we talked about when we placed the order was translated into what we actually got!!!  The seating system was great, but the chair itself is completely inappropriate for Ashlea - she is unable to reach the wheels and push herself around!  That is the whole point of a wheelchair - independent mobility!!

So - we sent it back to the manufacturer...  Not sure what happens next - hopefully they can exchange it (we tried modifying it with no luck) for something more appropriate.  You can see in this picture that she's not loving it - 'I STUCK' she yelled (translation - Why won't this damn thing move???).

 

In better news...  tomorrow is my first Tuesday to myself.  No appointments for me, no children at home...a whole 4 1/2 hours to myself - by the time I do all the drop offs and pick ups.  Even though I've had plenty of time away from the children, I haven't had time alone in the house for YEARS.  Almost 6 years.

LUXURY.

No one call me...I plan on being very productive asleep on the couch in front of the TV.  All.  Day.

Friday, February 12, 2010

A week of firsts...

First full week of school drop offs and pick ups.  We all survived AND I met the other mum whose child is in a wheelchair - nice to have an ally at the school gate.

First scraped knee at school - apparently Emma was very brave and not at all averse to the sympathy it generated.

First case of head lice in Emma's class....eeewwww. 

First photography class.  On Tuesday nights this term I am doing a community course in photography.  One of the aims of the class - other than actually being able to use all the bells and whistles on your camera - is to be able to take a good photo first shot, rather than take 100 photos to get a good one.  We even have homework.  So far I've taken 101 photos for the homework and have yet to find one I'm happy with.  Guess I've got a way to go yet.

First child-free Tuesday.  WOOHOO!!  I'd love to be able to tell you that I spent it getting a massage or a facial, but the truth is far more boring.  I'm not even sure how I feel about confessing to it in public - but blogs without personal confessions can get a little boring, so here goes.  I went and saw a psychologist.  The reason I am going to see her is to get the NICU out of my head.  The girls were in the nursery almost 4 years ago, but to me it feels like just a few months ago.  I'm not sure how many people know I had symptoms of PTSD after the girls came home from the nursery - with vivid flashbacks to a particular day when I thought Ashlea was going to die right then and there in front of me.  Of course me being me, I have NEVER spoken to a living soul about that day which means that it is still in my head, and even though I no longer have flashbacks, I am still hypervigilant.  Every time Ashlea gets sick my mind immediately jumps to "will she die?".  So I have decided to confront the NICU ghosts and hopefully banish them for good.  Well banish them as much as possible anyway.

As well as a week of firsts we have also had a possible 'last'.  Possibly the last time we drove our little Subaru.  I got rear-ended (AGAIN) and we are waiting to hear if the car will be written off.  Possibly my favourite of all the cars I've ever owned.  Although, it was pretty hard to beat my 1972 purple LJ Torana...


 




Wednesday, February 10, 2010

Special Exposure Wednesday - Sorry Muz!!

Sorry honey - but you let me take the photo...

Here is Ashlea and her Daddy sitting on the couch with their matching bellies...




Don't forget to check out all the other Special Exposure Wednesday photos here.

Sunday, February 7, 2010

Hey Lady - can I be your new BFF?

With the start of school this week, has come the start of many school drop offs and pick ups.  Can anyone please tell me WHY OH WHY does it pour with rain at 9am and 3pm but not at any other time during the day?  (OK maybe this doesn't happen everyday - but so far we've had 3 school days and they have all been rain-filled).  Getting 3 children into school in the rain is a nightmare - especially if one of those children is in a wheelchair and unable to hold her own umbrella.  BUT, I have a cunning plan...

I have seen another mother, who appears to have a child at school and a younger child who is also in a wheelchair.  I have spied her in the distance as we've both been wrangling wheelchairs out of vans and school children through the gate.  I am going to lie in wait for her try and bump into her at school this week.  I have plans for us to be BFF's - even if only at pick up and drop off time on rainy days.  That way one of us can stay with the kids in the cars while the other runs down to pick up the school kids.  It is a great plan...just as long as she doesn't think I'm a crazy person when I pounce on her this week.  Wish me luck!

In other news Ashlea seems to be making a little improvement in her crawling.  She is still quite weak and can only go short distances, but she seems more willing to try and crawl so that has got to be a good sign.  Her physio saw her last week and was shocked by the change since our previous appointment.  She advised us to give Ashlea as much opportunity to crawl as possible, and not to use the standing or walking frames at the moment as she is too weak.  Even though it was bad that she was shocked by Ashlea's condition, it was good to have someone who knows Ashlea confirm that I'm not going crazy and that there is a noticeable physical difference in he rmuscle tone and strength -  someone (a medical person who shall remain nameless) had suggested to me that perhaps this was an attention seeking thing...as if Ashlea has the cognitive skills to be able to do that.  Or maybe they thought I was being the attention seeker...who knows!!

Ashlea also had an eye appointment last week.  The eye doctor confirmed that during her last EUA her prescription seems to have changed significanly (from +5.00/-6.00 to just plain old +1.50).  I can't figure out how this is possible - the implication is that she may not even need to wear glasses.  Don't get too excited - she is still legally blind due to her optic nerve hypoplasia - just that the vision she has she may not need glasses for.  The problem is it is nearly impossible to test her eyes at the clinic due to her hatred of doctors and medical procedures, so I am going to do a little test of my own at home.  I am going to get the new glasses made up, and then get the orthoptist from RIDBC to come out and do a vision assessment - once with the old glasses, once with the new glasses, and once with no glasses.  Whichever she gets the best results on is what we'll go with.  I know I sound a little crazy at this point, but I think it is the only way to test her eyes somewhat accurately - short of having another EUA - which the doctor tried to schedule for 3 months time.  Not likely mate.

I've got to go and do all my grown up 'school mum' jobs now in preparation for the week.  Does anyone know how to iron culottes?  Or even why anyone would think they were a good idea for a school uniform???

Friday, February 5, 2010

The Cold Hand

My friend Jenny who blogs at The Fisch Tank recently linked to this well written post on Grief at Hopeful Parents.  It accurately describes how as a specials needs mum you have to be prepared to have a certain amount of grief in your life.  It is always there to some degree - sometimes its way, way in the background.  Other times it comes and smacks you in the face.

Like today.

Audrey had swimming this morning.  As we were waiting for her lesson to start Grief came to visit in the form of a pair of identical twin girls.  I have seen twins before - plenty of times - but this is the first time I have been up close with identical twin girls.  Blond identical twin girls.  The same age as mine.  A little glimpse of what could have been...

At the moment the 'twin thing' seems to be the biggest trigger for my grief.  As Audrey gets older and more independent, and because of Ashlea's recent regression and increased dependence, I have been really aware of 'what could have been'.  Usually I don't let myself think "If only...", but I have caught myself doing it lately.

If only all my children could walk it would be so much easier to do school drop offs.

If only Ashlea didn't need all these appointments I wouldn't have to run all over town and end up exhausted by the end of the day.

If only my twins were like 'real' twins.

I think Emma starting school has highlighted this feeling of difference too.  We stand out from the other families.  We have a wheelchair.  We rush off to appointments after the school drop off.  We don't have time to get involved in school activities.

At swimming this morning I tried to focus on watching Audrey, but I was mesmerised by these twins.  It was like poking at a bruise - it really hurt but I couldn't stop watching.  Eventually I had to force myself to look away otherwise a few tears would have turned into a flood of tears on the pool deck.

Its funny because I don't feel bitter at all about our situation, or angry.  But that doesn't mean I don't feel sad over what could have been.  Sometimes I even let myself fantasize about what it would be like to have healthy twins.  Usually I try and not to do that as I know its a slippery slope, but I also wonder if it is a normal part of the grieving process.  When the girls were younger the grief was so overwhelming that I felt like I had no skin.  Things are a lot better now, to the point where I mostly just accept that this is how things are.  It has taken me a few years to develop this thicker skin - but I obviously still have some soft spots.  Like blond identical twin girls.

Anyone else have a soft spot?

Wednesday, February 3, 2010

Special Exposure Wednesday - My Big Girls


Look at my big girls!!  2 preschoolers and a big schooler!

 

We have entered a new phase in our lives.  The twins are now both at preschool, and today was Emma's first day at big school!  She was up and dressed by 7:15am and ready and waiting to go, partly excited, partly nervous.  When we got there she was looking more and more nervous and didn't want to talk to anyone, but when we got into the classroom she just said good bye to us and got straight into the first activity.  I think she takes after me - she gets anxious about things but hates people to make a big deal about it.



 So cute! The uniform (size 4) looks enormous on her! I couldn't wait to go and pick her up and hear about her day.  I was greeted with a big smile and "I had a super dooper fun day at school", so school day 1 was a huge success. 


Ashlea had her second day at preschool yesterday and I was once again greeted with a smile so I am hoping that means she is enjoying it. She grizzled a little bit during music time - I don't think she loves being in the corner chair - but the teacher remembered that her new favourite song is "Jesus Loves Me" so they all sang that and the crisis was averted.  Just as well this is her new favourite - can you imagine the entire preschool class singing Dancing Queen???


Wow - how did we get to this stage??? 2 big girls at preschool and one big girl in kindergarten. So far things are going well. And in spite of my reluctance to get up on time for school every day, I did feel a little thrill of excitement as I drove away from school with one less child for the day. Maybe there is something to this school caper after all?

Roll on Tuesday - Emma will be at school and Audrey and Ashlea will both be at preschool - my first child FREE day in nearly 4 years....WOOHOO!!!


Don't forget to check out all the other Special Exposure Wednesday photos here.

Monday, February 1, 2010

Paed Review

Ashlea got reviewed by her paediatrician today.  We were meant to go and see her this Wednesday, but after consulting together our paediatrician and rehab specialist decided that Ashlea should be seen today and given a thorough examination just in case something had been overlooked.

Unfortunately that meant fronting up to the ED again.  Fortunately it was just a matter of paging the registrar (who looked about 12 I might add) and he came straight down and met us.  He took a detailed history and examined Ashlea and then we went to find somewhere Ashlea could crawl on the floor so the doctor could see what was actually happening.

He could see that she was hesitant to crawl.  It is like she is an old lady - she slowly gets up on her hands and knees for awhile, crawls a little way and then gingerly lies down again.  Despite this she doesn't appear to be in any pain.  His feeling was that it was possibly some sort of inflammation. Ashlea then had some blood taken to check for any signs of inflammation, and specifically for muscle inflammation.  She also had a full blood count to check for signs of infection.  Everything came back NORMAL - I am really not used to hearing that when it comes to Ashlea!.  We also had hip and knee x-rays to check that there weren't any little fractures that we'd missed - but they all came back clear too (except for the obvious signs of rickets - which the doctors said wasn't likely to cause pain).

SO, there are no signs of anything seriously nasty going on with Ashlea.  Her electrolyes are good (Ashlea good anyway), she doesn't have Guillain Barre, there are no signs of infection or inflammation, and no broken bones.  We are now just going to watch and wait and see what happens.  Hopefully things will go back to normal of their own accord.  She has possibly tried to crawl a little more over yesterday and today so hopefully that is the start of something???  One experiment I might try is to give her some panadol and see if she is able to crawl more freely - that might indicate if she is in pain when crawling.  The thing is that when she isn't weight bearing she moves all limbs freely and vigorously so they obviously aren't in pain then.  Its a mystery.  I also feel that she is better in the evening than the morning...but that could just be her taking after her dad ;-)

Anyway, I feel reassured that we have investigated the problem reasonably thoroughly now.  As is often the case with Miss Ashlea there is no clear cut answer.   Thanks for all your thoughts, prayers and good wishes for us.  I will keep you updated on her progress.