Friday, January 29, 2010

Worry Update

Ashlea is still really struggling to crawl.  She is also unable to W-sit and can't weight bear on her legs.  I have spent most of the week on the phone to various specialists trying to see if there is something more that can be done.  Here is the latest update:

  • The consensus now seems to be that the weakness HAS indeed been brought on by the swine flu vaccination.  There is absolutely nothing else that has been going on with her that can explain it.

  • As her weakness doesn't appear to be progressing, the doctors are fairly confident she doesn't have Guillain Barre Syndrome - although we are under strict instruction to go to the ED if she deteriorates over the weekend.

  • If I had known there was a risk of this happening I would NEVER have given her the vaccination.

  • She didn't crawl at all yesterday or today at preschool (and usually she is all about the crawling at preschool when we pick up Audrey).  At swimming yesterday she wasn't able to do the activities she could do last week - and the teacher noticed that she was a lot weaker - which cemented in my mind that the symptoms did come on over the weekend not gradually over a number of weeks.  Also I found a photo of her sitting up just a week ago - so I know her deterioration was quick.

  • I have informed the GP (who gave the vaccine) of Ashlea's reaction and requested that it be reported as an adverse event.

  • Ashlea did seem quite perky this evening and got up on her hands and knees to crawl a couple of times.  She was still only able to take a few 'steps' before collapsing, but at least she seemed more interested in trying.

  • We are seeing our paediatrician next week to see if she thinks any further testing needs to be done.  Can you believe the only appointment I could get was 4pm on Wednesday - Emma's first day of school.  We are also seeing our physiotherapist.
The moral to the tale - DON'T get the swine 'flu vaccine.  To think that this has happened BECAUSE of my actions, not in spite of my actions is driving me crazy.  I thought I was doing the right thing by getting the vaccine for her due to her increased risk of serious consequences of the 'flu - and now I am responsible for causing her harm.

The doctors are hoping she will recover on her own.  I am hoping it will happen quickly.  She has gone backwards by at least 12 months if not longer in terms of her physical milestones.  I feel sick to my stomach whenever I think about it, with that awful "Oh my goodness what is going to happen next" feeling that I used to have all the time when she was in the NICU.

For those of you who pray, please pray for a speedy recovery for Ashlea.

Preschool!!

Today was the BIG day - Ashlea's first day of preschool.  I am very relieved to report it was a complete success!

I arrived in the morning with a van full of equipment - a corner chair, the CAP adjustable chair, a bag of nappies, container of wipes, Ashlea in her wheelchair plus her preschool bag and feeds for the day.  We were greeted at the door by the SN teacher (Mrs C).  Ashlea was quite happy to be there and seemed keen to push herself around in her chair and check out what was happening.

We had talked a lot about preschool without much response from Ashlea so I wasn't sure if she had understood the concept of preschool or that it was her turn to go there.  Alone.  All day.  It was a relief to see that she was happy to be there.


Mrs C offered to get in the sandpit with Ashlea but I suggested we stick to positive experiences for the first day (Ashlea is NOT a fan of sand).  They sat near the sandpit instead...it will take a lot of work to get her in it I think!

I stayed until morning tea so I could show the staff how to give Ashlea her tube feeds.  They were a little unsure of themselves but seemed to get the hang of it quickly.  I left preschool at around 11am.  When I said good bye Ashlea just whispered 'bye mum' and went back to doing what she was doing.

And with that I left her for her first experience of 'out of home care'.

Gulp.

That was hard. 

I took Emma and Audrey around to play at a friend's house which proved to be a good distraction for the rest of the day.  I don't know if they noticed me checking my watch repeatedly - wondering what was happening at preschool and if it was pickup time yet!  I only rang once to check on her - just after the second feed to see if they had managed OK - and was told that everything was going well.

FINALLY it was time to go and get her - as they wheeled her over to me she had a big grin on her face!  I think picking her up and seeing how happy she was proved to be far more emotional than leaving her there in the first place!! Her teacher said she'd had a good day.  She had sat at each of the tables and had a go at the activities - and she had shown the teachers her cheeky sense of humour.  Like when she knows exactly what the teacher wants her to do and REFUSES to do it.  And starts laughing hysterically about it.  There was a bit of that.

 

And look at this photo - Ashlea sitting in the middle of a group of kids playing lego.   Brilliant!

 

All in all I think we can say it was a huge success and we'll be back for more next week!

Wednesday, January 27, 2010

Update to the update...

I followed up with Ashlea's renal team today and they called her in for a thorough examination - MUCH more thorough than the ED - although the report from the ED made it sound like they'd done a really thorough job...

They checked her over and she doesn't seem to have anything sinister.  She did crawl more for them.  She had more motivation - she wanted to get out that door and away from the doctors!  She was quite wobbly and still very slow (at one point she said "I want to go fast"), but seems a little better than yesterday.

The main thing they had to check for was Guillain Barre syndrome - something totally awful that nearly gave me a heart attack when I googled 'swine flu vaccine' and 'muscle weakness'.  She doesn't appear to have this as it is an ascending paralysis.  She isn't paralysed, just weak, and she still has all her reflexes (like all good CP kids).  Anyway, we are keeping an eye on her and if she gets worse we are to go back.  We are all hoping she will improve on her own - and quickly too.  It took her SO LONG to learn to crawl that it is heartbreaking to see her really struggle with it.

In other more exciting news...Audrey goes back to preschool tomorrow.  She has chosen a new bag, lunch box, hat etc.  She has a bit of a Barbie / Princess theme going on...


And the BIG news is that Miss Ashlea's first day of preschool is Friday.  No surprises that she chose an In the Night Garden bag.  No need for a lunch box or drink bottle though - so we're taking a cool chair instead!   Look out for a'first day of preschool' post later in the week!

Tuesday, January 26, 2010

Quick Update

I ended up taking Ashlea over to the ED for bloods, as the most likely reason for her to be unwell is an electrolyte imbalance.

5 hours and 1 blood test later we are home as her bloods were surprisingly good.  She is still quite weak when trying to crawl or sit up, so I will speak to the renal team tomorrow and see what they say.  She has no other signs of illness so I doubt if it is related to the swine flu shot.  I think it is more related to her kidney disease - especially as we made changes to her medications recently.

Anyway, not a great way to spend the public holiday, but there are still a few hours of daylight left, and the local council is putting on a big Australia Day 'thing' just up the road from our house so I am about to take Emma and Audrey up there.

Happy Australia Day!!!

PS Do you know what I realised on my way home from our 5 hour trip to Emergency???  Ashlea's kidney doc has an iphone.  I have her email address - so I could have gotten in touch with a kidney specialist today!  Hopefully I will think of that first next time.

Worried...

I'm worried.

Ashlea's not crawling.  Or sitting up.  It's like its painful or she is really weak and just doesn't have the strength.  She can still roll, but doesn't do it much.  She is still talking but possibly not as much as usual.

The only thing that has changed is we have added phosphate to her diet.  Can phosphate affect your muscles?  She seems really floppy.

Or maybe her sodium has gone really high (she has been very wet the last few days) but there has been no reason for it to go high.  She isn't sick - well she doesn't have any symptoms of being sick.  The only other thing is that we had our swine 'flu shots on the weekend.  Could that have caused it?

Of course it is a public holiday here so I can't call anyone.  I was going to call yesterday but seeing as it was late I decided to leave it until today...and realised too late about the public holiday.  I think I will start by calling the kidney specialists first thing tomorrow and see what they say.  Of course it will probably mean having a blood test....

Please pray that this is a temporary setback for my little miss!

Sunday, January 24, 2010

Participation guilt...

Confession time: I don't always include Ashlea in family activies.

Sometimes I think it is justified that the other children have 'a turn' at being the centre of attention.  Sometimes I know Ashlea will hate something so I leave her at home.  But sometimes it is just too darn hard.


A couple of examples for you.  We went to the zoo last week.  I could have gotten Ashlea out of the pram at every exhibit to try and show her the animals.  But I didn't have the energy to lift her out just to point out something she probably couldn't see anyway....so I didn't.  She spent most of the time sitting quietly - a miracle surely -  in the pram with the sunshade right down over her so she wouldn't get sunburnt. 

Guilt.

Mind you I should have probably realised that the zoo isn't an ideal outing for the vision impaired!

Another example.  Yesterday we spent the afternoon in the wading pool.  Emma, Audrey and I got in. Ashlea stayed inside watching Night Garden.

Guilt.

In my defense it was too hot to have her outside (and the water was too cold to take her in - she is soft like me and will only get in if the water has been warming in the sun for a few hours first).  Ashlea really doesn't cope well in the heat, so at the moment I can't even take her out into the backyard in her walker or wheelchair as it is just too hot (crazy hot - 43 degrees here yesterday - that's 109 for you folks in the northern hemisphere).

There are many more situations I can think of where I don't go the extra mile to include her fully. 

Guilt.  Guilt.  Guilt.

How far out of your way do you go to make sure your SN child participates in all your family activities???

It is so hard to balance family life so that every child gets a turn!  I feel guilty for not always including Ashlea, but then I also feeling guilty for all the things Emma and Audrey miss out on altogether because it is too hard to manage with Ashlea.

For example - we have NEVER been to the beach as a family (I know...how can I call myself an Australian???).  Ashlea would hate everything about it.  And when she hates something that means that one person has to devote their entire attention to trying to console her.  Which makes the rest of the trip difficult - especially if you need 2 adults to take your other 2 children swimming.  Sometimes we will take an extra adult with us - but it can still be extremely stressful if Ashlea howls the entire time.  Which has happend.  Many times.

Stress and Guilt.

A friend of mine has had respite for her son during the holidays and has used the time to do activities with her other boys.  Even that would make me feel guilty.  Ashlea would be horrified if I left her at home with a carer and went out with her sisters.  And yet she'd be horrified if I took her to some of the places her sisters would like to go - for example the movies.

So, where is the balance.  I feel like I should be striving to include Ashlea all the time, but, like I said, sometimes it is just too hard.

Friday, January 22, 2010

Mortified

So you all know that Murray and I went away last weekend and got to sit in a spa and swim in a pool whilst relaxing on the marriage enrichment weekend.

There is something I should have remembered before getting in the spa - they don't play nice with my eczema.  Something about all that chlorine makes me really, really itchy.  Anyway, my arms and legs have gotten all itchy - I know you didn't need to know that. but this story is going somewhere... 

For some reason my chin also has the itchies.  Now the problem with my chin looking red and blotchy, is that it makes me look like I have a good ol' case of pash-rash.

One CANNOT be seen looking like they have pash-rash after being on a CHURCH run marriage enrichment weekend.  Especially if it isn't actual pash-rash!

Hand me the paper bag...

Wednesday, January 20, 2010

Special Exposure Wednesday...We've got wheels!!!


Look at what we picked up yesterday...



We are borrowing this chair from the Spastic Centre until funding comes through for Ashlea's own wheelchair.  It is a surprisingly good fit and Ashlea enjoyed trying it out yesterday afternoon.  I always thought that the day we picked up Ashlea's first wheelchair would be really emotional.  However because the loan chair became available quite quickly I didn't have the opportunity to dwell on it too much.  Probably a good thing.  The surprising thing - and there have been many surprising things along this journey - was that it wasn't emotional in a sad "my child's in a wheelchair" kind of way at all.  I did feel a little teary - not because it was sad - rather because it was such a delight to see Ashlea using the chair and trying to get around.  She really enjoyed the freedom.  I think she particularly enjoyed being able to see where she was going - usually when she is crawling she just goes along full pelt and every so often will stop and look around to get her bearings.  In the chair she could see where she wanted to go and try to get there.  We still have a long way to go with getting her used to pushing it herself - but she seems to 'get' that she has control of where she wants to go, so hopefully that will help her be motivated to self-propel.

On the way home from picking up the chair, I stopped at a large chain of huts that serves pizza to get some dinner.  I thought I'd be brave and take the chair in rather than the pram (another surprise - the chair is lighter than the pram).  I had been dreading that first outing in the wheelchair so I thought I'd just get it over and done with.

Well, you'd think those poor boys who work there had never seen a person in a wheelchair before.  They were so gobsmacked at the sight of Ashlea that they nearly forgot to make the pizza.  I had to remind them to go make the pizza.  I had always imagined that the looks and comments would be more subtle.  Nope. 
They started with:

"Is she sick?"
Me - No she has a disability.

Then it became:

"I feel so terrible for children like this"

"I hope she gets better one day"

"Will she walk" (you can visualise the head shaking when I told them that wasn't likely)

"What is her disability" (more head shaking and tut-tutting when I said cerebral palsy)

It was really quite full on.  I was trying to give simple answers as I didn't really want to have a lengthy discussion with them.  And I didn't know what to say.  Ashlea doesn't feel terrible that she has these disabilities so I don't know how to deal with total strangers who claim to feel terrible on her behalf.  Please feel free to leave clever retorts in the comments that I can use in the future!

Anyway, I wonder if Ashlea picked up on it all because when we got to the car (the pizza guy had to carry the pizzas for me as I hadn't yet worked out you have no free hands when pushing a wheelchair) I said to Ashlea:

"Say bye bye to the pizza man"

Ashlea whispered "bye bye"

I put her in the car and as the man walked away (out of ear shot thankfully) she said:

"Bye bye stinky"

I looked at her and said "WHAT did you just say"

She looked back and said "Bye bye poo-poo"




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

Sunday, January 17, 2010

Thank You!!

Today I have to say a huge THANK YOU to Carolin, Kellie and my mum who watched the children yesterday so Murray and I could sit by this pool...



There was also a great outdoor spa that we sat in and looked at the stars from on Friday night.  NOICE.

Despite my cynicism the marriage enrichment weekend was actually really good.  They showed some video talks by an American guy named Paul David Tripp.  Despite his rather animated moustache, the talks were really good.   REALLY good.

Allow me to wax Christian for a moment...

His basic premise is that the reason we have trouble loving each other is because we don't love God enough.  When we are worshipping God (as opposed to worshipping ourselves or our things or whatever it might be) it is much easier to love others.  When we really see what God has done for us and have a grateful heart it is much easier to love others selflessly, like Christ does.  His 3 practical tips at the end were about:
- worshipping God as creator (and in your marriage not denigrating your partner who is a person created by God)
- worshipping God as sovereign (and therefore not denigrating your partner's story - it is God who has authored their story)
- worshipping God as saviour (and therefore growing in grace - both of you - using the little moments as moments of ministry rather than of anger)

For me the one thing that really stood out is that the whole point of marriage - of any experience in life - is for us (Christians) to be transformed into the likeness of Christ.  God wants me in this exact situation in my life - it is all part of His plan to make me more like Christ.  Pretty humbling really.

*** End of churchy bit***

The kids had a great time while we were gone.  They made chocolate brownies with Kellie and then had pizza for dinner on Friday.  Kellie's flatmate Lou came over to visit and showed the girls her surfboards (Emma is planning on being a surfer when she grows up - despite having NEVER been to the beach in her life) so that was a real hit. 

My sister was happy because between Kellie and my mum she didn't have to change any dirty nappies or wipe anyone's bottom.  She was VERY happy about that as she doesn't cope at all with poo.

My mum was a legend and folded all my washing (nearly a months worth). 

Here is Ashlea sitting amongst the washing - you can see the pile almost comes  up to her shoulders - you can also see some of her bruises from her blood test too.  She is playing with her iphone (don't freak out - its actually Carolin's phone - I did not buy my child an iphone!).  We are breeding another generation of technological geeks in our house.


Saturday, January 16, 2010

Friday Five

We have had quite a busy week this week, so here is a quick update of 5 of the 'big' things for us...

1.  Emma and Audrey had 'swimvac' - special holiday swimming lessons.  They have both finally decided they like putting their heads under the water.  Finally.  After 18 months of lessons we are finally making some progress.


 


2.  Ashlea does have rickets (see Tuesday's post about her latest blood test).  Her x-ray showed some changes consistent with rickets caused by her kidney failure and low phosphate levels.  We started her on supplements today and she may need to resume another medication that effects her parathyroid and vitamin D levels (somehow they are all connected).  I forgot to ask if the changes to her bones are likely to reverse once treatment is started or if it just prevents further damage.  Anyone kidney people know???

3.  I spent the entire day at the tennis yesterday with my sister (she got free tickets through her work).  It was fantastic - we got to see Serena Williams, Elena Dimentieva & Lleyton Hewitt.  We even got a free corporate lunch.  Mind you they put the lunch on right when Serena Williams' match was on.  What were they thinking???  I stayed for about 5 minutes and then hot-footed it back to the game.





4. Murray and I are having a night away from the children.  A few couples from church are on a 'marriage enrichment' weekend.  I am usually a little sceptical about these things - but hey its our first night away from the children EVER (except for when I was in hospital after having the twins...which doesn't count!) so I am not complaining.

5.  My name is Alison and I am an internet addict.  We are actually on the marriage thing RIGHT NOW and I am blogging!!!  Its OK - everyone else has gone to bed.  I just needed a little fix.  Being an anxious poppet I wasn't sure if I'd be able to sleep so I brought a distracttion my addiction along with me.

Wednesday, January 13, 2010

Special Exposure Wednesday: I heart Daddy



Murray is going to hate this!!! He hates having his photo taken, much less me then posting those photos on the web. But seeing as he rarely reads this blog...what he doesn't know won't hurt him!

So in honour of the fact that he has been in charge of the children 3 days this week while I have worked hard/attended the tennis, I thought a photo was in order.

Ashlea and her Daddy...





They're in lurve.

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

Tuesday, January 12, 2010

That place

Today we had to go to 'that place' (the Children's Hospital) for Ashlea's regular kidney check up.  I have a love/hate relationship with that place - I love them for taking care of Ashlea, but I also hate going there.  My whole mood changes as we are driving there - I can feel my jaw clenching and my stress levels rising before we've even seen a doctor.

Today Ashlea had to have bloods done as well.  I think I have posted in the past about how gut wrenching this is.  Ashlea just hates it and finds it so distressing. As soon as we arrived at the reception area Ashlea said to me 'Time to go?'.  She remembers.  She knows.

Today they were very short staffed and we were left with a blood collector who I will from now on refer to as 'the crap one'.  He tried a couple of times unsuccessfully to take Ashlea's blood.  Eventually I looked up at him and said 'You don't get any more attempts'.  Someone else tried, then someone else tried - and botched - a finger prick (how is that even possible?).  Eventually they called Florence (Nightingale in my eyes) down from the ward and she got it first try.  We love you Florence and will be asking for you by name next time!

The whole time (1 hour 10 minutes all up) Ashlea was sobbing and screaming hysterically, saying 'I want time to go' and 'I want say bye bye'.  We were both shattered by the end.

We then saw the kidney specialist.  Things are relatively stable.  Ashlea still isn't growing much length wise, but we are hesitant to start growth hormone due to her passionate hatred of needles (GH is a daily injection that I would have to give at home).  Her kidney function has decreased a little - but not heaps.  I am a bit disappointed that her creatinine has risen - its just that little reminder that she does indeed have kidney failure, and that even though it is still a way off we are on the road to transplant.  Sometimes I manage to completely put it out of my mind.  Except for nasty reminders on blood test day.

The current numbers (for my kidney peeps):

Creatinine: 237
Urea: 11
Sodium: 141
Hb: 159

Her phosphorous is still too low so we may have to add yet more phosphate to her diet.  She had to have a bone xray to check for rickets (which can be caused by kidney / phosphorous / parathyroid problems).  I don't really understand how it all works.  We don't have the results yet - hopefully she doesn't have any bone damage yet.

We were both very glad to get home after our stressful morning!  Poor Ashlea has a couple of huge bruises on her arm - including one that is black - from where 'the crap one' tried to get her vein.  Thankfully we don't have to do that again for another 3 months.

Saturday, January 9, 2010

Birthday Greetings...

Another year older...another year...wiser older.

Yes, today is my birthday.  Thirty nine.  How did that happen???  How did I get to be a grown up?  And not just a little bit of a grown up -  next year is the big  4 0 .  I wonder if I'll start to feel like a 'real' grown up then?

We had a quiet family get together at home to celebrate - complete with home made birthday cake from my Mum (maybe this is why I don't yet feel grown up). Next year I might have a big soiree ...we'll see.  I got an iphone for my birthday so I'm pretty happy.  I've actually had it since Christmas and I LOVE it.  I'm totally addicted already. 

The girls are excited because Grandpa is visiting us for the weekend (from Queensland).  They are very happy to have a visitor who is happy to play endless games of hide and seek with them (they have worn that one out with all the regulars).  Emma wasn't so happy when told she would have to give up her bed for Grandpa to sleep in, but that problem was easily solved with a camp-out in the lounge room for the night.

Now that the sun has come out we have finally been able to go outside and play...



She looks all sweet and innocent doens't she?  But she knows what a water pistol is for...



I had to take a photo of her head only as she had taken most of her swimmers off by this stage...




Ashlea with her Grandpa...

Wednesday, January 6, 2010

Special Exposure Wednesday



How grown up does my baby look???



A big girl ready to go off to preschool in a few weeks.

She learnt a new song this week.  On Sunday she was in Noah's (Sunday School) and the lady who was her assistant that day had a bad back so she got her husband to come over and give her a hand.  Now this guy is probably approaching 50, is a bible college lecturer and VERY respected by a lot of people, but not for a minute did he think that the job of looking after Ashlea was beneath him.  He spent the morning crawling around on the floor with her, reading stories and teaching her to sing "Jesus Loves Me".  Some people just KNOW how to treat people.  And of all the songs for him to sing with her - singing that one shows that he gets that she is a person loved by God every bit a much as the next person.  I nearly cried when I picked her up - it is so touching to see someone interacting with your child and really seeing them.

No prizes for guessing why he is widely respected hey?

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

Monday, January 4, 2010

The elephant in the room...

I shouldn't really refer to Ashlea as an elephant...especially seeing as she is getting a little chunky at the moment, but sometimes people go so far out of their way to be politically correct and not say anything about disability that it feels like they are avoiding talking about the elephant in the room.

I caught up with some friends on the weekend that I haven't seen for years.  YEARS. We were friends in our  late teens / early twenties but have lost contact over time.  Anyway, I saw some of them on the weekend (thanks to facebook) and it was a little strange.  When I meet other mums of kids with special needs we are not backwards in coming forwards about asking questions about our children, sharing stories, critiquing hospitals and doctors - you name it we'll discuss it.  But NONE of these friends asked anything about Ashlea.  Not one question about what her condition is.  Not one question about if she'll walk.  Not one question at all.  Not even when I pulled out the feeding tube and gave her afternoon tea in front of them.  One of the children had eyes as big as saucers but all the adults were being very careful not to stare at us.

It felt really weird.  Not that I want people asking a million questions, but it just seems strange to catch up with people and talk about all sorts of things...yet not mention the biggest thing that has happened in my life.  I have a child with a disability.  I don't know - maybe its just me, but I find it strange when people don't acknowledge Ashlea's disabilities or the 'bigness' of disability (excuse my poor English there - bigness just seemed the right word). 

The other thing about the afternoon was the disabled access at the venue.  BAD.  I am going to name and shame them (Drummoyne Sports Club) and hope like anything that they never track me down and sue me!  Maybe I should write them a letter as well, because it just wasn't good enough.  They had a ramp into the club for disabled patrons to use - it even had a sign hung across it saying it was for disabled patrons only.  The only problem was that someone had tied the sign to the two railings on either side of the path meaning that you had to climb over or under the sign to get up the ramp.  I had to lean Ashlea's pram right back to slide her underneath - all very well for us but if you were an adult in a wheelchair it would have been pretty frustrating and undignified.  When we made it to the top of the ramp we discovered that the doors could only be opened from the inside - so you have to stand around outside until someone sees you and lets you in.  Again for us it wasn't a huge deal, but if you were an adult in a wheelchair I imagine it would get quite frustrating constantly coming up against these barriers.

Saturday, January 2, 2010

Picnic Pics

We had a great night at the Lord Mayors Picnic on NYE.  Even Ashlea enjoyed herself...mostly...except for during the fireworks.  Here are some photos...



On arrival at the picnic EVERY child received a recorder...there are 1000 children at this picnic...you can imagine the sound of 1000 recorders screeching en masse can't you.



Ashlea's response to her sister's recorder playing...

.

The picnic is really well organised.  There is entertainment, food, heaps of activities for the children including face painting, magical creatures, a king and queen, bad guys (who need the recorders blown at them), motor bikes to sit on, tea parties, X-Box and to finish off the night - fireworks.






 







Thanks Lord Mayor!  Please invite us again.