Monday, August 31, 2009

I need some tea and sympathy!

I have a killer sore throat. I went to the doctor today - my doctor is lovely and very thorough - but she just isn't quite the same as my previous doctor who retired last year. You always got sympathy from her! All I got today was:

'Yeah, it looks a bit red'.

Man I can hardly swallow and am taking painkillers around the clock and it still hurts. Maybe I'm not as tough as I thought??? Apparently it is viral and will go away in time - hopefully quick time as my sister and I are going to see Ben Folds tomorrow night at the Opera House. I have been looking forward to it for ages so I will be going even if drugged to the eyeballs!

OK - whinge over.

A big thanks to everyone who commented on my last post. I think I will have to look into treating Ashlea's sensory issues rather than just ignoring them in the hope she will grow out of them (does that ever happen???). A few people mentioned brushing therapy which I have heard of before so I might look into that. Also I think we have a referral in to the psychologist at the Spastic Centre so hopefully she will have some ideas.

And now for some good news.

We've had far fewer tantrums (from all of us) over the last few days I am happy to report.

Ashlea has a new trick - she knows her own name. If you ask her what her name is she will say 'Ashlea'. Previously she would just repeat the word 'name'. I am trying to teach her to say her name in the appropriate part of the hello song (you know that song that every group therapy session starts with). Usually when we sing 'her name is....' Ashlea says 'turtle' instead of 'Ashlea' (her multi-purpose word for when the right one won't come to mind).

Also, today she did a couple of things that surprised me with her level of recognition / understanding. In the doctors surgery (which we haven't been to in months but she obviously remembers because she started crying as soon as we went in) she calmed down while I was talking to the doctor, but as soon as the doctor said to her "Can I listen to your chest?" she said "Bye Bye". She knew what was going to happen. She was listening and understanding. In the past she wouldn't have freaked out until the doctor actually touched her.

Then when we were walking back to the car we walked past a house and she said 'puppy dog'. I thought ' what - there is no puppy here' but then remembered that last time we had come to the doctors there was a dog in the yard and we had heard it yapping. She is obviously seeing her environment and making sense of it more than I give her credit for. There were no verbal cues this time - we were just walking past and she recognised the house - meaning she relied on vision alone. Don't know about you but I was impressed.

OK, I am starting to feel a little wobbly from my Nurofen Plus so I am going to go now - hope this hasn't been too much of a waffly drug induced post!

Friday, August 28, 2009

A confession

When I first started this blog, I wrestled with the question of how honest to be. Well, today I am going to make an all out confession. A couple of confessions actually.

Confession No. 1: I am doing an absolutely SHITE job as a parent.

The evidence for this comes from Confessions Number 2 & 3.

Confession No. 2: Sometimes I hate having a child with a disability.

Confession No. 3: I had more tantrums today than my children - and that is saying something! Today should have been renamed 'Interntaional Day of the Tantrum (IDOTT)' - everyone in our house had a turn, and another turn, and another...you get the picture.

So, obviously the most shocking of my confessions is number 2. Now don't worry, you don't need to go out and call DOCS, I love Ashlea and 99% of the time I love her just as she is and don't want to change her. But other days, that other 1% of the time...man she tests my patience.

Today we went to the park after preschool. I have been trying to make a bit more time for fun with the children lately. I feel that we have fallen into a rut of just staying home because it is easier and because we are tired from all our other running around. So I have decided that once a week after preschool we will either go to the park or out for afternoon tea, and because it was a beautiful day today (25 degrees and sunny in the middle of winter - yay for the return of El Nino) I decided we would spend some time outside. We walked to our closest park and Emma and Audrey got straight into playing and having a great time.

What did Miss Ashlea do you ask?
Sit in her pram and chat or sing a song?
Sit in her pram and whinge after awhile because she got bored?
Sit in her pram and scream blue murder from the minute we got there? YES, that would be the one.

SO FRUSTRATING! This is the part about disability that drives me crazy - the sensory issues. Any strange noise, place, smell - anything unfamiliar - can set her off screaming. And there is no reasoning with her. At least with the others I could resort to threats or bribery but none of that works with her. I either have to hold her the entire time or we have to leave. Today I decided that we were NOT leaving. I tried holidng her but that didn't work - she still screamed and it prevented me from playing with Emma and Audrey. In the end I let her scream it out in the pram while we played for awhile. I feel a bit guilty (well I feel like I should feel guilty), but I am sick of having to leave places early because she freaks out.

So there we were at the park - Emma very hesitantly trying out the equipment (she has inherited my anxiety to do with anything more than a foot off the ground), kamikaze Audrey climbing up every piece of equipment with absolutely no fear, and Ashlea...screaming... Fortunately there was no one else at the park so I didn't have to deal with other parents stares or comments about why we just carried on and ignored her.

This is why we don't often go out as a family - not because of the logistics of a child with a disability (although that is an issue) - rather because we can pretty much be guaranteed of an Ashlea meltdown. If anyone has any ideas on how to deal with this PLEASE leave a comment! She is getting too big to be carried around all the time when she freaks out - I need a strategy that will work as she gets bigger. Any advice gratefully accepted!

Hopefully a good night's sleep will mean less tantrums tomorrow - from all of us. All the kids are in bed. I'm going to have a cup of tea and chill on the couch. And tomorrow as Scarlet O'Hara says, is another day...

Tuesday, August 25, 2009

What a difference a year (or 3) makes

Today I attended a support group at our local children's hospital for parents of children with kidney problems. It is the first time I have been to the group in awhile and it was strange to be one of the more 'experienced' parents there. I can remember my very first time there - Ashlea had only just come home from hospital and life seemed kind of crazy. Actually as I think back it was quite crazy.

Today at the group I met another set of teeny tiny twins (and their parents) who survived TTTS and now one has chronic renal failure. It was like a little flashback. Two tiny ex-prems, feeding problems, reflux, weight gain worries, naso-gastric tubes - it was all so familiar.

And yet so distant.

Yes, Ashlea still has many issues (high support needs is the new euphemism I believe), but we have come so far from those days. Not just in the practicalities of feeding, sorting out her reflux, getting rid of those awful NG tubes, but mainly my overall level of worry. Of course I still worry about Ashlea's future. My big unspoken worry always is that she might die (I don't waste my time worrying over trivial things anymore!) . But I have realised that I am making progress - I don't worry about this all the time like I used to. It is still always in the back of my mind - but that is the point - it is now at the back of my mind - rather than always at the forefront taking up space and energy. Mostly now I just enjoy her.

Things that were such a worry at the beginning are now 'normal'. Things that were so unfamiliar in the beginning are now second nature. The difference is that I know Ashlea now. I know when she is sick and when she is well. I know what she likes and what she doesn't like. I know her. I also know practical things like how to navigate the hospital system. I know when my child NEEDS to be seen by a doctor. I know when it is better for us to stay away from the hospital (hmm that would be 99% of the time). I guess what it boils down to is that I know my child best, and I now have the confidence (mostly) to say that I am the one that knows what is best for her, - and if that means checking her out of hospital against doctors orders then so be it (and yes I have done it).

Its funny how you don't realise that these little changes are taking place, but seeing new parents back at the beginning of the journey (not that we are that far along in ours) was a nice reminder that we have actually come a long way. A long way from worrying about every feed, every weigh-in, every appointment, every illness.

So - thanks for the flashback! It was nice to be reminded that we have actually made a little progress down this road. And if there is anything I can do to help any of you who travel this road with me - just say the word.

Sunday, August 23, 2009

Preschool Service

Today was Emma and Audrey's preschool church service. It is always a great day - the church goes out of their way to welcome the children, and the parents get to see their little angels up on the stage singing some songs.

I think for almost the first time in 2 1/2 years of preschool Emma actually did what she was supposed to do while on the stage. Past services have seen her tap-dancing, picking her nose, distracting other children...you get the picture. This year she sang the songs and did the actions. I didn't have a good view of her as her class was behind the younger class - should I be concerned yet that the 3 year olds are bigger than my 5 1/2 year old???

Audrey on the other hand was front and centre - everyone had a great view of her! She did really well and sang the songs and attempted to do the actions - it was very cute. I do admit to feeling a little teary seeing my little ex-820gm baby up there on stage doing so well.

Ashlea didn't love the noise and I ended up having to take her outside. I have no idea how they are going to try and get her to stay up on the stage next year! We came back in for the final song which was Amazing Grace - and I had another teary moment as Ashlea tried to sing along (without knowing the words or the tune). It is a great hymn with great words - I especially love the verse that says:

Through many dangers, toils and snares
I have already come
Tis grace has brought me safe thus far
And grace will lead me home

A very appropriate song for her.

And now for the photos...

Ashlea...



















Audrey having her face painted...












Emma being cheeky...



















Emma and Audrey with their painted faces (yes that is a piece of cheese painted on Emma's forehead)...

Saturday, August 22, 2009

What a week!

This week has been crazy busy - like every week of ours used to be before our break from therapy (how did I survive 3 years of that???). We got a lot done though...

We have organised Ashlea's seating needs for preschool next year. For sitting at the table at preschool she is getting a CAP adjustable chair (I think - my mind has gotten a bit confused about all this equipment). A big thanks to Molly's mum for bringing in the chair so we could try it out - sorry I didn't get to chat or thank you properly we had to rush off to our next appointment. Here is a pic of the chair - although I think ours will have casters on the bottom as it is quite heavy and the casters make it easy for the staff to move it from one table to another. Ours will probably have a cushion and pommel as well.












For floor sitting she is getting a basic corner chair. The only picture of a corner chair I could find is this one - her chair will be like this, except flat on the floor to stretch her hamstrings out after botox.

















And speaking of botox...we have a date! At the moment we are scheduled for botox on Monday 14th September. However, Ashlea is scheduled for her EUA (eye exam under anaesthetic) on Tuesday the 8th September. I am hoping they might be able to do the botox AND a dental exam AND the eye exam while she is having the one anaesthetic. Usually they do botox under gas only - that will not go well with my little princess screaming, thrashing wildcat. We have a great paediatrician, so I am hoping she can use her powers to co-ordinate everything.

After a busy week I am looking forward to a bit of retail therapy this weekend. My sister's new kitchenette got put in upstairs this week - so we have to go shopping to stock it. Nothing better than going shopping and spending someone else's money!

PS We had our first question at swimming this week - a mum very politely asked if I minded her asking what the 'thing in her tummy is'....and no, when you are so polite, of course I don't mind you asking!

Wednesday, August 19, 2009

The saddest little sight...

I took this photo of Ashlea yesterday afternoon. Is it not the saddest little sight?


I was busy doing 'stuff' around the house and wasn't really paying much attention to what the kids were doing, when I walked past the back door and saw this. She was just sitting there, quietly looking out the door, like she knew the bike was out there, like she knew she'd like to be out there too, but also like she knew she couldn't get there on her own. I tell you, I don't often give in to the 'sads' about disabillity, but this sight nearly.broke.my.heart.


Monday, August 17, 2009

Stuff

I haven't had anything of interest to blog about over the last few days - just lots of 'stuff' going on. Stuff like this...

I Should Have Left Well-Enough Alone Stuff...
I have no wireless internet access at the moment. I decided to upgrade my wireless router (all part of the decluttering plan) as the only possible place for my computer (according to the great plan) is a far flung corner of the house - with no wireless access. So anyway, we paid a fortune for this fancy-smancy thing that has turned out to be nearly impossible to setup. I work in tech support and I couldn't do it. The tech support lady couldn't do it. It is a work in progress...But it means you might not hear from me much until it is fixed!

Frustrating Stuff
The gas company are the evil spawn of satan. They took our connection money 6 months ago but still haven't connected the gas...

Ouchy Stuff
Ashlea BIT me today. Yes, the child who doesn't eat or chew any form of solid food, was so excited while riding on the bike today that she leant over and took a bite of my arm. She will have no excuse when it comes to her eating as I now know she can bite - HARD.

Shocking Stuff
Today a good friend of mine (and blog reader so I hope she doesn't mind me writing this - but I can't stop thinking about it) was diagnosed with breast cancer. Absolutely shocking. She is younger than me, and healthier than me. She eats weet-bix for breakfast and never drinks coke. I have been known to have coke for breakfast - and yet she still got breast cancer. It makes you realise how little control we have over our lives. It is amazing that even after all the lessons I have learned through Ashlea (ie YES it can actually happen to you) I am still so shocked to hear when things like this happen to people I know. This is my first close up experience of cancer. Hopefully it will just be a matter of surgery to remove it and that's it. Hopefully I will be able to be a supportive friend through it all. Hopefully I will get the chance to share with her about God's love and His great plan for the day when all of this suffering will be wiped away.

Thursday, August 13, 2009

More decluttering

I have finally cleaned out Ashlea's new bedroom! It is all set up and ready for her...except..the bed hasn't been modified yet so she can't actually sleep in it, but it is still progress.
















Notice the In the Night Garden quilt cover?

It is quite a small room, but with only the bed and one toy shelf (another IKEA expedit - what else?) it looks quite spacious. She loves crawling in there to play with all her toys. It is the closest bedroom to the living area so she can easily go in there to play - if only she could see the TV from her bed maybe that would solve our night time problem of wanting to get up to watch ITNG???

We need modifications to the sides of the bed before we can start using it. We are thinking of getting something made by TAD. I don't have a picture to post, but they make a bed surround that looks like it is made of white mesh, and has a gate in the middle of the side of the bed. If anyone has seen any other bed modifications or has ideas for us, please leave a comment. We also need an industrial strength mattress protector, and probably some other water proof 'thingies' so I don't need to wash the sheets everyday (this girl can WEE - even though we change her nappy during the night she still wets through - actually if any of you know of some super absorbent nappies please leave a comment about that too).

We had week 2 of swimming today and it was a great success. Ashlea loved it, and totally got into it. She did have a gagging fit mid-lesson which can be a little off-putting as it looks like she is about to hurl in the pool, but other than that it was great. I did notice a few parents sneaking a peek out of the corner of their eyes, but mostly I just enjoy playing with Ashlea so don't really notice (or care). Audrey comes with us and is SO well bribed behaved . She gets a packet of chips (which don't get opened until the second before swimming starts) and it takes her nearly the whole lesson to eat them. She sits quietly the whole time - really quite out of character for her - but I am not complaining!

When I was buying Audrey's chips I noticed they had Junior Mints in the vending machine. I haven't seen them in Australia before, but I couldn't resist after that Seinfeld episode.

Monday, August 10, 2009

Decluttering...and other things

You may remember I started some decluttering awhile ago when Audrey got her new bed. My plan is to move all the girls into separate bedrooms, mainly because Ashlea has a habit of waking up screaming at night - and waking everyone else up. Either that or she gets woken up and then wants to get up and play - and by play I mean watch In The Night Garden - for 2 hours. This does NOT bring out the best in me as a parent, hence the room changes.

So, we have moved M's orc-slaying-station (computer, for those of you who aren't gaming widows) into the study. Looks pretty good hey? That's because you can't see the pile of crap to the right of the desk that nearly reaches the ceiling.



















The next part of the plan involves me building Ashlea's bed - that hasn't happened yet. But I did have a thought that maybe I could rig her up with a portable dvd player so she could watch ITNG in her room if she wakes up at night. I thought if I plugged the dvd player into the Power Box V then Ashlea could use a switch to turn it on herself. The only problem with my great plan is (well actually there are a few problems...)

- would she be able to find the switch in the dark?
- would she then turn it on every night?
- would incessant viewing of INTG cause irreversible loss of brain cells?
- but most importantly how do I get the dvd to play automatically???

Even if she can turn the dvd player on by herself, how can I get the actual dvd to play. As you can see this 'grand plan' is still a work in progress, but if anyone has any thoughts on this please leave a comment.

As to the 'other things' mentioned in the title, the only other thing going on is my amazement at my children's appreciation of all things bottom-related. I hadn't realised that saying 'poo poo' was so funny that you had to laugh until you nearly wet your pants! Even Ashlea gets in on this. She was in the high chair tonight chattering away to herself saying what I thought was "puppy puppy". What I realised she was saying (rather proudly I might add) was pop pop (the children's word for fart). She knew she had done a pop pop and she was crowing about it just like the other children.

And don't even get me started about Audrey pretending to be a dolphin in the bath... "Mum I'm a dolphin...and (sticks bottom up in the air) this is my blow hole"

Aren't little girls meant to be sugar and spice and all things nice???

Saturday, August 8, 2009

Wheelchair Angst

I think we have chosen a wheelchair for Ashlea - which is actually a really good thing. However I am having wheelchair angst today...."Is it the one?"

The one we are looking at is the Quickie GTX. The good things about it are:
- it folds (easy to get in the car) & isn't too heavy
- it has swing away foot plates (for standing transfers - although she is so little her feet are at least half a metre off the ground...not sure how that will work just yet)
- it will have a moulded seat and back supports, as well as lateral supports and a seat belt
- she can push it herself (sort of)
- I think we can get mag wheels (less chance of little fingers getting caught)
- you can get an adjustable stroller handle for it (easier pushing for everyone)

Here is a pic of the basic model. Of course we will be getting a cool red one.

We have looked at so many chairs that my mind is now muddled about which chair had what features. So I think we are just going to go with this one - it has most of the features we want. We need to get our application into the PADP soon in the hope we might have it in time for the start of preschool next year (STOP laughing all you people who know how efficiently the PADP works...we are still hoping to have it by the beginning of next year).

Feel free to leave feedback if there are any experienced wheelchair users out there - especially if you have a quickie. Can you believe their slogan is "there's nothing like a quickie"???

Thursday, August 6, 2009

Swimming Update

Today was mine and Ashlea's first 'regular' swimming lesson, and I think overall we can say it was a success. Here is a blow-by-blow account for those of you thinking of trying this at home...

The swim school we go to is completely flat and accessible. The only slightly unexpected thing (something that completely didn't even occur to me until we were standing on the edge of the pool about to get in) was access to the pool itself. No nice graded stairs like at hydro, just 2 steps and a ladder. Hmmm - we managed but it wasn't ideal. I had to hold onto the ladder while stepping down onto the first ledge which was a fair way down - and oh did I mention I also had to hold Ashlea and not drop her in the water at the same time. Once we were in we discovered that the water at swimming lessons is definitely not as warm as the hydro pool (which is sometimes as warm as a bath) but we got used to it as the lesson progressed. Ashlea was a bit fussy at first and the instructor even got a "BYE BYE" from her (which means I have had enough of you GO AWAY) but she got into it more as the lesson went on. Obviously she wasn't able to do everything the other kids did, but for the most part she joined in and enjoyed herself. She loves kicking and splashing so we were able to do plenty of that, and they have one of those standing platforms so we were able to practise standing on that. Not as many songs as usual, but they did do Humpty Dumpty where the children sit on the edge of the pool and jump in when Humpty falls and that is one of Ashlea's absolute favourites so that made her happy (she could do that All Day Long).

As for questions from other parents - not a single one! I'm not sure about any stares or looks as I was too busy wrestling the octopus that is Ashlea to notice. There were times when Ashlea was obviously unhappy and the attention was on us, but by the end I felt it was nice for everyone to see her enjoying herself and squealing with delight. Hopefully it helps break down some barriers when people see that children with disabilities enjoy the same things as everyone else.

The instructor was helpful and talked to me about what things will be best for Ashlea to participate in. Its funny though - she obviously has the swimming teacher focus rather than the physio focus so some things the rest of the class do are just NOT going to happen for us (like dunking her whole head under or blowing bubbles...hmmm...not going to happen).

All in all it was a positive experience. Ashlea was a bit thrown at the beginning because it was different to the swimming she is used to, but she definitely got into it and enjoyed it, so we will be going back next week. At the moment she is crashed out on the floor asleep - swimming always exhausts her. Or no, maybe that is because she was up watching 'In The Night Garden' in the middle of the night last night???

PS Custard update - we are up to HALF A JAR!

Sunday, August 2, 2009

Pop culture...

How much are your kids affected by pop culture? Sadly to say I think mine are a little too 'under the influence'.

Even Ashlea has been affected...




Personally I am not a huge fan of Abba, so you can imagine my horror when I discovered that not only does Ashlea recognize their music, but she can also sing along!!! She also does a pretty mean rendition of Queen's "Somebody to Love Me" (no I haven't been playing Queen to my children - that song is in the movie Happy Feet which my children have seen many times).

Which brings me to Emma and Audrey who think they are in fact tap dancing penguins like Mumble (Happy Feet again for those of you who don't have small penguin-obsessed children)...