Friday, July 31, 2009

Mini News Flash

Big excitement tonight in our house - Miss Ashlea ate (yes, you read that correctly) 5 mouthfuls of custard (and by mouthfuls I of course mean tiny morsels on the end of a spoon), but never the less - it was custard and she ate it!!!

She didn't love the experience, but she coped quite well. She still tried to fight me off by pushing me away with her hands and turning her head to the side - but instead of screaming hysterically while doing this, she was laughing hysterically!

This is definitely progress! All those hours of hard work doing nothing about her eating has obviously paid off!

Thursday, July 30, 2009

Thursday

We are having a pretty quiet week considering preschool has gone back.

After thinking about my swimming dilemma and listening to everyone's advice, I have decided to go for the regular swimming lessons this term. Our swim school was more than happy to have Ashlea (and I) in the Mums & Bubs class, so we start next week. At first I was going to try and take Ashlea swimming while Audrey and Emma had their lessons, but I think that is a bit crazy and there is a fairly high chance I will end up screeching wildly at everyone while trying to dress myself and 3 children, so I will take Ashlea seperately. Next Thursday is the day...obviously I will let you all know how it goes! Part of me is apprehensive at being so "out there" - knowing there will be lots of questions from other parents, but the other half of me thinks "Stuff it - people need to get used to seeing people with disabilities out and about in the community".

Today we attended a Renal Transplant & Dialysis Information Day at the children's hospital. It was very helpful and informative, although I did have an "I can't believe this is my life" moment whilst driving home. Not that I can't believe this is my life, its just that I sometimes forget that this life, my life, is very different from most other people's lives. Attending an information session about dialysis and transplants certainly makes you realise how different - especially when your reaction is "that was really good" rather than "Oh no, I can't believe my poor child has to go through all this".

Although I think I am quite 'tough' now and attending these things is part of our lives, there was one moment during the talk that did make me tear up - when a dad who had donated a kidney to his daughter got up and spoke. It wasn't anything profound that he said, it was just seeing him that made me tear up. Seeing ordinary people, who you wouldn't give a second look at in the street, living extraordinary lives and doing amazing things for their children. It is a privilege to meet people like that.

Sunday, July 26, 2009

Holidays are over

Today was the last day of the school holidays - the kids spent the day in their jammies playing Wii. We are all getting quite good at it now - particularly Emma - she has unlocked the most new games. I am temporarily ahead of M in the soccer ratings which is definitely something to brag about (although I know it won't last!). For all our practice over the last 2 weeks my Wii age has only come down from 56 to 54 - surely after all our devotion it could be a little more generous than that!

So tomorrow is back to preschool and our regular routine. It seems like it will be a pretty quiet term as Ashlea doesn't have much therapy at the moment due to waiting lists. We didn't even get into hydrotherapy this term which is quite disappointing as Ashlea LOVES her hydro. Which brings me to a dilemma that I need advice on.

Seeing as Ashlea loves swimming I thought I could take her myself. The swim school that Emma and Audrey attend only has swimming lessons - no 'free' swimming, but they do have baby swim classes. I am toying with the idea of seeing if I can take Ashlea to one of those classes. She wouldn't be able to do the age appropriate class, and I can't afford individual lessons ($50 each), so I was thinking of doing a 'mums and bubs' swimming class with her. I just don't know if I could deal with all the questions and comments that would open me up to.

The reason I am considering this crazy plan is that we already go to that swim school so I am familiar with the layout of the pool and change area, and also I know that the pool is clean (they check their water quality every 30 minutes) and warm - Ashlea (and I) would NOT cope with cold or even cool water.

So they are the pros for going to regular swimming classes. The question is....Do I have the balls (figuratively speaking of course) to take her to a class with developmentally normal children and open myself up to the opportunity for all those mums' questions / stares / comments etc?

So, is this a crazy idea?

My other options are:

a) just take her swimming in a regular pool - BUT I don't think the water would be warm enough or clean enough (you all know what a germ phobe I am)

b) see if the Spastic Centre has any places in their hydrotherapy class - BUT that may involve driving at least 40 minutes to get there which would make my day VERY busy. But would it be worth it to avoid the discomfort of being obviously the odd one out at regular swimming???

Is this a crazy plan or should other people just suck it up and accept the disabled people in their midst???

Friday, July 24, 2009

The Poor Thing

We were at the shops the other day (getting donuts as usual) and Ashlea got 'poor thing'ed. Let me explain...

I was chatting to another mum and a little old lady stopped me to point out that Ashlea was in the process of throwing her glasses on the floor. At this point I am liking the little old lady as she has saved me from having to retrace my steps throughout the shops looking for them later. But then, as she was turning to leave, the old lady looked at Ashlea and said "the poor thing".

Not liking the lady so much at this point. What do you say when people 'poor thing' your child? It isn't so bad when your child is obviously unwell and it is sympathy because they are sick, but Ashlea was happily sitting in her pram babbling to herself. I know the lady didn't mean any harm by it, but I feel it was an unnecessary reminder of my child's disabilities - another case of seeing the disability rather than the child.

So, I need a comeback. Any ideas???

Tuesday, July 21, 2009

Not Me Monday (on a Tuesday)


Usually I don't participate in "Not Me Monday" created by MckMama, but today is "Not My Child Monday" and even though I am a little late in posting it, I can't let this oldie but goodie from Emma go unpublished!

It was definitely NOT my child, who while we were in the pathology waiting room of our local children's hospital was staring at a young boy who was wearing a cochlear implant, and who happened to have very dark skin.

I did NOT hear her say something that sounded to me like:

"Why have you got that thing?"

Upon turning around I definitely did NOT hear her say to the little boy (in a VERY loud voice in front of a crowded waiting room):

"Excuse me! I'm talking to you! Why have you got that SKIN???"

I then did NOT have to give a short lesson about people from other countries (in front of the entire waiting room and the child's father...who thankfully was very understanding).

Definitely not my child, no way!

Sunday, July 19, 2009

A Wii bit of fun!

It's school holidays at the moment and the sun is shining! Have we been outside enjoying the winter sunshine??? No. We have been inside playing Wii. In fact I think we are a Wii bit addicted. Especially Emma - she has played the most and keeps getting to unlock new games. I have mostly just been reminded about my poor levels of fitness and co-ordination - although I must say I am the current reigning hula-hoop champion in this house!

I'm sorry to say that I have to out my sister to the web world - she is a Wii cheat! There is a Wii-Fit game where you have to jog on the spot for 3 minutes but she has discovered that if you just hold the remote and move your arms like you're running the Wii thinks you're actually running. Although I think seeing as the Wii is often rude to us about our level of fitness, it is only fair we should be able to trick it occasionally.

Here is expert Em in action...she wouldn't let me film her practising her boxing so this is the only pic I have of her with her addiction:


We did go out in the sun for awhile today...I'm not sure what this game was - I think the car gets turned on its side to become a house (maybe):


And Ashlea has been practising her walking. She has started saying the word "walker" to indicate she would like to walk, but she still doesn't say it anywhere near as often as "bike":

Friday, July 17, 2009

Shameless post to try and win Bron's giveaway...

OK, my friend Bron over at Big Brother & Little Sister recently got a new sewing machine and has been putting it to very creative use. This month she is having a give away of a one of her gorgeous creations. Having never 'won' anything off the internet I thought I'd make a shameless attempt for this one.

It has got me thinking about having a give away on this blog. But what would I give? Bad advice? Unwanted opinions? Too much information?

Access All Areas

Yesterday the kids and I went to see the Kingdom of Paramithi - a kids show at our local RSL. Emma and Audrey really enjoyed it, Ashlea not so much (picture a hysterical screaming child saying 'bye-bye' to indicate she didn't want to be there).

Anyway, I thought as part of this blog I could provide a little community service - an accessibility rating for venues we have been to.

So, yesterday we went to Castle Hill RSL. To start with, there was plenty of disabled parking, and from there a wide sloping path up to the entrance. It wasn't too hard to push a pram up the slope, but it may have been more difficult if you were self-propelling a wheelchair (although I am sure the ramp is the corrrect gradient so maybe I am just unfit???). Once inside it wasn't too hard to find the lift up to the next floor. From there we had to find another lift up to the next floor, but all in all very accessible. Those 2 lifts give you access to the whole club except for the auditorium.

We stopped to visit the disabled toilets on the way and they get a big plus for size. Very easy to get a pram or wheelchair in the door and plenty of room inside. Also very clean. The only potential difficulty is that the door was a little hard to close - and that was when I was pulling it from a standing position - could be harder if you were sitting in a wheelchair. On the whole though, definitely one of the best, if not the best disabled toilet we have visited so far.

The last leg of our journey was a little trickier. To get into the auditorium we had to go up one of those stair-climber-thingies (not sure what the technical term is). It was a platform that I had to wheel the pram onto, and then a staff member operated it, and it "glided" up the short flight of stairs. At this point I must say that the staff were fantastic and very helpful. But I found the whole stair-climbing experience a little difficult. It just made us so conspicuous. Everyone else was streaming up the stairs, watching us get on and off this stair climbing thing. The other thing was that we had to get a staff member to operate it for us - which wasn't too bad for us with a pram, but if you were an adult with a disability it would take away a little of your independence to have to ask a staff member for assistance.

All in all it was a very accessible venue with helpful staff and great disabled toilets. The only thing is that the stair climber is really a little undignified. It gives others the opportunity to stare and notice that there is a difference, and you can't operate it without assistance from a staff member.

Overall rating: 4 stars

Tuesday, July 14, 2009

Audrey didn't quite listen to the plan...

OK, so maybe I need to adopt an "I'm going to Emergency at every given opportunity" policy and maybe I'll never end up there, because my self-imposed exile has gone down in flames!

Miss Audrey didn't stick to the asthma plan we were given (ie meds every 3 hours). Last night she had her ventolin at 5pm and at 5:30 was wheezing, coughing, couldn't talk etc, and seeing as this asthma caper is all new and I really have no idea what I am doing I called the ED and was told to bring her in. So...anther night in the ED. The same treatment as the night before, but this time she is now able to comfortably make it to 3 hours between treatments. Tomorrow we start weaning to 4th hourly, then 6th hourly etc. I feel like I have more of a handle on the asthma plan now. Actually, there are 2 plans - the weaning after a hospital admission plan, and the regular plan. At present we are on the weaning plan and then we will move on to the regular plan. I think the goal of the regular plan is to avoid ending up in hospital - sounds good to me, however my real plan is to have no more of these attacks in the future at all. Audrey is feeling a lot better now and is playing really nicely with Emma this afternoon - it is obvious they missed each other.

After we got discharged this morning, we walked around to the Renal Treatment Centre where M met me with Emma and Ashlea for Ashlea's 3 monthly kidney review. The good news is that Ashlea's kidney function is quite stable, the bad news is that our lovely nephrologist is retiring next year. Not happy about that. We have known her since Ashlea was in the NICU so it will be hard to change to another doctor (although I already know which of the other doctors in the team that I do and don't want). Otherwise Ashlea is doing well - her bloods were stable and have been for 6 months, so we continue on as is and hope for more of the same. Even her liver function was close to normal today and that almost never happens. The only thing is that her growth has slowed right down (actually she is going sideways on the chart rather than up) so we are increasing her feeds. We are hoping we can get her growing again without having to use growth hormone just yet (GH is inevitable in the future, but seeing as it is a daily injection we are trying to put it off until absolutely necessary). The only other thing we discussed was the dreaded swine flu. If Ashlea gets any symptoms of the flu at all we have to contact the renal team so she can get anti-viral treatment.

So that's the medical scoop. There is nothing else to report on as that is all we have done the last few days. Hopefully there will be no more reports from Emergency, but after being surrounded by all the 'flus and spews there last night I fear it will only be a matter of time...

Monday, July 13, 2009

Another sleepless night in the ED...

Can you believe that after my self-imposed Emergency Department Exile, I had to go there again last night! And what made it worse was that it was with a different child and a NEW medical problem.

It would seem that last night Miss Audrey had her first ever asthma attack. She has had a cough for a few days, but yesterday she started wheezing with it, and by bed time she was coughing constantly, wheezing and really working hard to breath. So off we went to the ED. She got to bypass the triage line and got taken straight into resus and was given salbutomol (sp?) and something starting with 'A' via a mask every twenty minutes. She was also given steroids and a chest x-ray. Over night they managed to wean her from hourly ventolin treatments down to 3 hourly so we could come home this morning. She is to continue with 3 hourly treatments today and then we have to stretch it out to 6-8 hourly by Wednesday.

The part that disturbs me the most about all this is that they sent us home with an asthma action plan...which assumes that this wasn't a one off and is likely the start of her suffering from asthma. I am remaining firmly in denial about that and am sticking to my belief that this was in fact a one off until there is any evidence (ie another attack) to the contrary. And the extra bonus is that (assuming Audrey does have asthma) that as her identical twin Ashlea has a 50% chance of getting it too.

Audrey coped very well considering she is not at all used to medical things. She took all her meds and co-operated (mostly) with breathing treatments. As it was her first experience with ventolin she got quite hyper and at one stage I had to restrain her from tap dancing on her bed. At least she provided me with some entertainment during the long night!

So we are home now, and following our asthma action plan for the next 3 days. We will carry our ventolin with us from now on in the hope that it will ward off any further attacks. M is home today as he had to look after Emma and Ashlea this morning so I think I might go have a little snooze...

Friday, July 10, 2009

Friday 5

This isn't an 'official' Friday 5, just 5 things going on in our lives this particular Friday....

1. I enrolled Emma for big school today (gulp).

2. I got Ashlea's blood results (she had her regular blood test yesterday) and the results were good - pretty similar to last time which is what I like - no nasty surprises:

Sodium 142
Potassium 3.6
Urea 6.6
Creatinine 197
Hb 171

Incidentally, yesterdays blood test was the least stressful in a long time. Ashlea cried the whole time, but it was just crying, not hysterical thrashing and screaming. Combine that with a blood collector who got her vein first go so that the whole thing was over in less than 10 minutes and I was a happy mumma.

3. I found out today (via Facebook of course) that in America you can get...wait for it...fish.tacos. That is just wrong on so many levels.

4. I have finished assembling my IKEA purchases and completed the first stage of my decluttering (the first stage was more storage for the toys, stage two is moving M's computer so that Ashlea can have her own bedroom).

5. Its the weekend and the beginning of 2 weeks of school holidays! Yippee!!! I am looking forward to having at least one pyjama day over the next fortnight.

Wednesday, July 8, 2009

Shame on you!

Can I get sued for slamming someone on my blog???

Last night while watching the final of Australia's Next Top Model, I heard Jonathan Pease (one of the judges) used the R word. On live television. Shame Jonathan Shame!

Time to write some letters...

Monday, July 6, 2009

Aaahhh....parenting. Don't you love it?

Miss Audrey had preschool today - no dramas, she loves preschool. So far I have been keeping a low profile with her class. I am avoiding being seen as 'the special needs mum'. I am leaving that for next year when Ashlea joins the class. With Emma's class last year I stood out like a sore thumb and got lots of sympathetic looks and "I don't know how you do it"s. So this year I have just gone for being inconspicuous, which up until this point I have really quite enjoyed.

Well, Miss Ashlea had other ideas about my remaining inconspicuous!!!

Today on the way to preschool pick-up we had a bit of a situation. A poo situation. Lesson number 1 - ALWAYS check your child's nappy before leaving for preschool pick up. Even if you can't smell anything. I of course did not do this today because I was still distracted by my IKEA decluttering frenzy. We were running a little late for preschool pick-up so I just grabbed the kids and ran. Hmmm...I even ignored Ashlea when she said "poo". Lesson number 2 - never ignore it when your child actually tells you they've done something in their nappy!

So upon arriving at preschool I picked her up and realized that 'it' was all leaking out the back of her nappy. And when I picked her up 'it' got on me...eeewww. What to do? My only course of action was to plonk her on the grass and change her right then and there. How many kids with sensory issues love the feeling of grass??? None that I know of, and Ashlea is definitely NOT one of them. So she starts SCREAMING while lying on the grass, I am trying to change her, 'it' is getting everywhere and I realise I have NO WIPES with me (lesson number 3 - ALWAYS refill the wipes - a huge thank you to whichever parent it was that gave me their wipes).

Oh, and I forgot to mention that we were parked directly out the front of preschool, and it was prime pick-up time...so pretty much every.other.parent in the whole class came past while this was going on. So much for avoiding those sympathetic looks! Emma was very keen to help me so she ran into preschool screaming at the top of her lungs "HELP, Ashlea's nappy is leaking and its dripping on the ground!" - just in case there was someone who had missed out on seeing the drama unfold. Anyway, I managed to get Ashlea sort of cleaned up and changed her clothes (yes I did dress my SN child in the middle of the street...what a sight that was for the bystanders, especially as the clothes in the nappy bag are all too small now so I had to wrestle her into them), and I got most of 'it' cleaned out of the carseat. We high-tailed it out of there straight home to the bath.

So much for me trying to maintain a dignified, under the radar pose at preschool this year. My cover has been blown! Not only am I the special needs mum, they have also all discovered that if something embarrassing or undignified is going to happen, I am the one it will happen to!

Saturday, July 4, 2009

Aaahhh...IKEA

I love IKEA - they have a storage solution for everything! Today I got another 'expedit' which has to be my all time fave piece of IKEA...although it is a bit of a beast to put together. It holds SO much junk which makes it great for the kids toys. I am going to put it in Audrey's room now that the twins are getting separate rooms. Yes, it is a bit sad that I am separating them, but whenever Ashlea gets woken up during the night she thinks its time to play - and I just canNOT watch any more Teletubbies at 4 in the morning!

Anyway, the real reason for this post, is that my tidying / decluttering frenzy (which is only really a frenzy of mess at the moment) has sparked a rather big dilemma. Now that the girls are going into big beds, I have a spare cot. And a spare high chair. And change table. And many bags of baby clothes. And a breast pump, sterilizer, bottles, a bassinet. The list goes on. And I don't want any more babies. Simple solution right? Just flog it on Ebay.

Problem.

We have 3 embryos in storage. Not just one, but THREE. I have been holding on to all my baby stuff "just in case" we use them one day. But I really don't want to have any more babies. I often don't cope with the ones I already have! To have more would be crazy. We can't afford them. We have no room for them. I couldn't cope with them.

But...I don't believe in destroying embryos. I know this is a very contentious topic, and I don't want anyone to feel that I am telling them what they should do with their embryos or pregnancies, but for me as a Christian, it is not an option to destroy them. The only ethical option I believe (for us) is to donate them to another infertile couple. In theory I am more than happy to do this, but there are so many 'what if's?' What if we had 3 more biological children out there that we never knew? What if they had a really awful life? What if they had a really great life, better than the children we have? What if 'something happens to one of my children' and I decide I do want another? ('Something happening to one of my children' is really code for 'what if Ashlea dies'...which is a fear that is always lurking somewhere in the back of my mind).

I just don't know what the RIGHT thing to do is. When we first started IVF I naively thought that if we ended up having leftover embryos we would just have more children than we originally planned on. I didn't foresee special needs, or the potential for 6 children!

So, I have this dilemma. Do I keep holding onto my baby stuff "just in case"? Should I consider having another baby? Would it push me over the edge completely??? Unfortunately there is no simple IKEA solution for this one.

Friday, July 3, 2009

My baby is growing up!

Most of the updates on this blog focus on Ashlea, but today I thought I'd spend a bit of time on Audrey. She is officially the baby of the family (being a whole minute younger than Ashlea) and she is growing up!

This week she got her 'big girl bed'. She was very excited. So was I. After having her wake up the entire household at 4am yelling "I need to do a wee!!!" from her cot several times last week, I decided it was time to make the move. Here is a pic of the bed. She didn't really want it pink and girly, but I couldn't find anything with penguins on it (her first choice) and the Diego stuff was too dark and boyish...so she got pink and girly.















I haven't put Ashlea's bed together yet, we are still recovering from the swearing festival fun of assembling Audrey's bed. The arrival of the new beds has however sparked a bit of a decluttering / tidying frenzy in me - and we all know there's only one place that leads.....IKEA! M is totally not thrilled by this idea so I think I will go with my sister (and no children woohoo!).

Audrey also had another first this week - her first play date. She has had friends over before, but usually they are Emma's friends and their siblings. This was the first time Audrey had one of her very own friends over to play. She had a lovely time. It was a little bit heart-wrenching for me though, as her new BFF's name is....Ashleigh. Hearing Audrey calling out to Ashleigh, and saying that Ashleigh is her friend and she loves Ashleigh stung a little bit. They are all things Audrey should be saying about OUR Ashlea, but instead it was another reminder that they don't have the relationship that most twins have. Funny how the little things can be bittersweet.

Wednesday, July 1, 2009

Some more cute kids...

I have posted previously about the lovely Lacey (Jaxson's mum) and the blankies she makes for sick kids. She has made a video of some of the kids who have received blankies if you want to see some special children. Ashlea is the very first photo in the video! And then again after the heading "imagine your child had multiple medical problems" she is the first photo again. You will recognise her later photos as you will have seen them all on this blog!

Thanks Lacey - we love our blankie!