Friday, July 30, 2010

GMFCS Assessment & Vaccination Clinic

Ashlea recently had another GMFCS Assessment done. This is an assessment of her gross motor skills only. She scored slightly better than last time - except that now she is older she has gone up an age bracket which gives her a lower outcome overall.  Make sense?  Last time she was scored as a 2 - 4 year old, now she is in the 4 - 6 year old group.

Last time she scored 43.79, this time she scored 47.91. Based on this, the graph puts her closer to a level 3 than a 4, HOWEVER, the description of a level 4 fits her perfectly, the description of a 3 is too advanced for her (last time the level 3 description was accurate for her).

Here is the graph:


As you can see she is closer to the level 3 line than the level 4 line.

However, this description of a level 4 (age between 4 and 6) fits her perfectly.  She is unable to do any of the things in the level 3 description.

Children sit on a chair but need adaptive seating for trunk control and to maximize hand function. Children move in and out of chair sitting with assistance from an adult or a stable surface to push or pull up on with their arms. Children may at best walk short distances with a walker and adult supervision but have difficulty turning and maintaining balance on uneven surfaces. Children are transported in the community. Children may achieve self-mobility using a powered wheelchair.

This is a very accurate description of Ashlea.  The good news is that Ashlea is continuing to make progress, so maybe she will score higher when we repeat the test next year.  If she were a 'typical' level 4 she would have pretty much reached her potential  by now.  Ashlea is still learning things - just this year she has learnt to sit on her bottom for short periods and to crawl up a couple of steps.

So, the good news is she scored higher than last time - and hopefully when we re-assess next year she might have gone up a little bit more.  It would be great if she could be a typical level 3 (or higher - but that is very unlikely).  Of course we love her to bits regardless of what level she is, but the higher up the scale you score, the less likely the need for major surgery and other complications of CP.

In other news, we attended the vaccination clinic today for the twins' 4 year old immunisations.  After Ashlea's reaction to the swine flu vax we thought it would be a good idea to get her monitored by the experts.  Audrey received both her 4 year old needles (whooping cough / polio and measles / mumps / rubella).  Ashlea only received the whooping cough / polio one.  Whooping cough is about a lot at the moment so we went ahead with that one.  Next time she has bloods done for her kidneys we will check her level of immunity to measles, mumps and rubella.  If her levels are good we won't give the booster shot, but if her levels are low we will give it.  I have the doctors name and number to page him over the weekend if she has any kind of reaction.  At the moment she isn't showing any signs of floppiness, so hopefully that is a good sign!

I'll keep you posted!

Wednesday, July 28, 2010

Climb!!

Recently Ashlea has discovered the delights of climbing. We had this foam wedge made so that she can learn to climb in and out of bed, however the bed is just a little bit too tall for her at the moment - so we have been practising on the lounge. She is very pleased with her efforts. Emma was up on the lounge encouraging Ashlea the whole way - and as you can see Ashlea was pretty pleased to get up there with her big sister.












Sunday, July 25, 2010

Don't forget morning tea on Tuesday!!

All has been quiet in our house since last Tuesday's drama (I really should know better than to say that out loud shouldn't I??).

Emma and Audrey decided this weekend that they want to share a bedroom.  We have been trialling it over the last few days - they both like it, but Emma reckons Audrey snores.

Audrey's response?
"She's imaginating things.  I don't snore."
(She does snore - both the twins do  - they have tonsils the size of golf balls.)

I am hoping for a quiet week too - although on Friday the girls are booked in for their 4 year old immunisations.  We are going to the vaccination clinic at the hospital after Ashlea's reaction to the swine flu shot in January.  I'm a bit apprehensive about her having another vaccination (we avoided this year's flu shot), but in theory these ones should be fine as they are all boosters of ones she has had before.  You never know with my little miss though.

Otherwise, don't forget morning tea for Special Needs Mums on Tuesday at my house.  If you arrive before me don't panic - it just means I am gas-bagging at preschool or buying morning tea from the cake shop on the way home!

Wednesday, July 21, 2010

Special Exposure Wednesday: War Wounds

Today's SEW has nothing to do with Ashlea (thankfully).  It is all devoted to Emma and Audrey and their war wounds.

After blogging on Monday that I was actually looking forward to the girls going back to school and preschool, here is how the first day went.

By midday I was called by the preschool to say that Audrey had broken out in a rash.  I arrived to find her covered in some kind of allergic looking skin rash.  It was all over her face, stomach, back, arms and legs.  And she was ITCHY.  I took her home and called our GP to see what I should do.







While I was waiting for the doctor to call back, I received a call from the school to say that Emma had fallen over and split her chin and could I come and get her.  The school secretary's actual words were "This is not the phone call you want to be getting from the school".  With an opening line like that I was imagining the worst (obviously she doesn't live in disability land where when you say something like that you mean something truely awful has happened).  Once I heard it was just a split chin I wasn't so worried.










At least that made the decision about what to do with Audrey's hives a little easier.  I picked Emma up from school, and took her and Audrey to get Ashlea (who was still blissfully at preschool).  Once our lovely SN teacher heard what was going on she insisted on coming to the ED with us.  I don't think she could quite believe that I was planning on taking all 3 kids alone - and when she asked why I was hesitant to let her come and I admitted it was because I was bad at asking for help, the deal was done.

Off to the ED we went, with the lovely Mrs Cook in tow.  She stayed the entire time - which was very helpful as Ashlea kept freaking out even though she wasn't getting any treatment herself (bad past experiences you think???).

Audrey was given anti-histamines and her rash settled.  We have no idea what set it off.  The last thing she ate was strawberries - I hope she hasn't developed an allergy to them as they are her FAVOURITE food.

Emma had her injury cleaned and glued.  She was very brave (I was actually a little surprised).  I expected her to freak out a lot more as she has never had any kind of medical procedure.  Ever.

So now not only is my goal of no ED visits for 2010 gone (actually that went in January), but now all 3 of my children have had a trip to the ED.  Kind of funny because I don't think my sister and I ever went when growing up.  Not once.  Nice to see we're mixing things up a bit.

Don't forget to check out the rest of Special Exposure Wednesday here.

Monday, July 19, 2010

Back to school

Sadly the school holidays end today.  Back to the routine tomorrow.  Can I confess something?  I think I am almost looking forward to it.  Shhhh.  Don't tell anyone!

As much as I love sleeping in and staying in my pyjamas, I also love Ashlea going to preschool - it is doing her the world of good.  So...to have preschool we have to have an end to holidays.  Also, I think we spend far too much time watching TV or playing Wii during the holidays, so it will be good to get away from that.  These holidays have been hard as we haven't even been able to play out in the backyard at all as we have a bit of a ... situation.  A bat shit situation.

Yes, the bats that Sydney City Council are in the process of evicting from the gardens and the domain, have all decided to fly north-west and use our backyard as a TOILET.  It is driving me...batty.  I know I may sound a little crazed, but let me show you a picture of our yard to give you an idea of what I'm dealing with.  I'm not talking just one or two drops of poop, I'm talking gazillions.   Every single one of those spots you can see is a blob of bat shit.



You know what the bizarre thing is - it isn't the whole suburb.  It doesn't even extend to my neighbour's yard, or even to my own front yard.  It is just our backyard.  I'm about to ring the Council and see if they have any advice, otherwise my next idea is to chop down anything green that they may be feeding on.  Or possibly relax my anti-gun stance and buy Murray a bee-bee gun and set him up on the back verandah.

If anyone has some bat removal tips please let me know!

In other news...

I have put another new page up - this one is called 'so what happened next'.  I fear it might be a little waffley...but it gives an idea of what happened after the the twins came home from the hospital.  I hope to get another 2 pages done - one covering all Ashlea's diagnoses, and then my favourite - one outlining all her milestones - I don't want to forget them!!

REMINDER:
Don't forget morning tea at my house next week (Tues 27th).  Hopefully all the kids will be well this time and we will be able to go ahead with it (last time 5 out of 6 of us had sick kids).  I think even if I only have ONE visitor for morning tea we will go ahead!

OK, in order to help you get those bat-poo images out of your head, here are a couple of quick snaps of the girls.  I've hardly had any time to pick up my camera so this is all I've got to offer!




Friday, July 16, 2010

Developmental Assessment

On Tuesday afternoon I received the results of Ashlea's developmental assessment.  Let me just say: it was brutal.

How can my gorgeous baby be as delayed as they say???

The test results are just gutting, because I guess tests measure what our kids can't do.  I don't see that.  I see what Ashlea can do.  I see how far she has come, all the great words and sentences she is using, the fact that she is still trying to learn new physical skills in spite of her cerebral palsy.  Tests don't measure sheer determination, cheeky personality or cuteness (unfortunately).

Anyway, here is the summary.

Griffiths Mental Developmental Scales - Extended Revised
Locomotor (Gross Motor Skills) 9 - 13 months
Personal Social (Self Care, Socialisation Skills) 19 - 23 months
Hearing and Speech (Language Skills) 24 - 28 months
Eye and Hand Coordination (Fine Motor Skills) 14 - 18 months
Performance (Puzzles, Construction) 13 -17 months
Practical Reasoning (Understanding Concepts) 22 - 26 months

Adaptive Behaviour Assessment System - Second Edition
Conceptual Skills - extremely low range
Social Skills - extremely low range
Practical Skills - extremely low range

The overall summary puts Ashlea's development on around the 1st centile which gives her the label moderate-severe developmental delay.

I kind of knew that, but still it is a slap in the face to have it confirmed.  It was also the first time someone has actually said the words 'intellectual disability' to me.  The whole time the psychologist was explaining the test to me I was thinking I need to get out of here.  But I sat there and listened, and she kept talking and smiling.

Get me out of here.
You don't know what you're talking about.

Finally we got away.  I don't really know what the full ramifications of the assessment are.

Does this mean she will have a moderate-severe intellectual impairment?

Will she be able to go to the same school as her sisters (in the support class)?

They are all questions for another day.  Today is a day for cuddling my baby and remembering what she can do, not what some stupid test says she can't.

Wednesday, July 14, 2010

Special Exposure Wednesday: Concert Photo

On Friday I wrote about Ashlea's first concert experience.  I managed to track down some photos.  Of course I couldn't post photos of other people's kids on the net so here is what I did...



The only kids faces you should be able to see are Ashlea and Audrey.  Ashlea is on the far left, Audrey on the right at the back (with a blue feather).
And here is a close up of Ashlea.




She wasn't looking overly thrilled by the experience - but she wasn't screaming so I was happy.  I still get teary when I think about her being up there on the stage with the other kids.  Her first concert.  Priceless.

For more great Special Exposure Wednesday photos click here.

PS Thanks to Chris (Chris Tolmie Photography) for taking the photos...and sorry for the creative license I have taken with them!!

Tuesday, July 13, 2010

Kidney Review

This morning was our busy hospital morning.  Thankfully Ashlea's blood test was over with quickly (that's the 3rd good collector we've had this year!) in spite of much screaming and thrashing.

We had a quick trip to the dentist.  He had a look at both the girls teeth and said they look pretty good.  When we go back in December he might try and clean Audrey's teeth and have a closer inspection.  Today we took it easy as it was her first visit and she was not looking forward to it!

He thought Ashlea's teeth looked pretty good 'all things considered' and said he would have a better look at them when she has her EUA for her eyes in the next couple of months.  I am pretty sure that when he had finished looking in Ashlea's mouth she asked him:

"Where your manners?"

Hilarious.

After that we went to see the kidney specialist - our last visit with her as she is retiring next month.  It will be sad to see her go as she has been Ashlea's doctor since 'the beginning'.  She is the one that came and saw us in the NICU and has taken care of Ashlea since.  Its kind of funny because I am usually a fairly co-operative, non-hysterical parent, but the first day we met her I was an incoherent, blubbering, borderline hysterical mess.

Thankfully Ashlea's kidney results are stable again:

Creatinine: 210
Urea: 8.2
Sodium: 137
Potassium: 3.4
Haemoglobin: 153
Alkaline phosphatase: 1082

We also met our new nephrologist today.  She looks very young.  Hopefully that doesn't mean inexperienced - at least it does mean that she is unlikely to retire in the near future!

This afternoon Ashlea and I are going to the physio while Murray takes Emma and Audrey to see Toy Story 3.  I felt sick watching the three of them drive off in the car together.  I think I am pretty well adjusted to 'disability land' now, but one thing about living here is that it makes you realise that anything can happen.  To anyone.  At any time.  It makes me feel ill any time I see Murray and the girls drive off without me.  All of the 'what ifs' start running through my head.  I used to freak out whenever I drove anywhere by myself too - but I had to get over that quick smart as otherwise it would mean no time out for me.  Ever.

How long do you think this paranoia will last?  I think it started a bit after I had Emma, but then after the twins...boy did it kick in with full force. Its still going strong four years later.  Anyone else???

Monday, July 12, 2010

This and that...

OK, so I re-typed last night's post as best I could.  I have put a gadget on the sidebar that has some quick links (well, just one really) - which links to a page that gives an overly detailed summary about what happened 'in the beginning' of this journey.

There will be more quick links to come.  Hopefully.  If I have time.

Tomorrow we have a busy day planned.  Ashlea is having bloods in the morning, and then seeing the kidney specialist.  She and Audrey are then seeing the dentist.  Cover your ears as the screaming will be heard for miles around.  In the afternoon Ashlea is seeing the physio and I am getting the results of her developmental assessment explained to me.  Fun for all the family.

Actually the rest of the family are hoping to have fun.  Murray is having the day off to help with the appointments and is hoping to take Emma and Audrey to see Toy Story 3 in the afternoon.  I am just hoping Emma will be feeling well enough to go - she had a little virus today that involved her backside being firmly planted on the toilet for much of the day.

Good times, good times.

Tonight when I told Ashlea she would be having a blood test tomorrow she freaked out.  I didn't think she would react, as she sometimes says the words "blood test".  Usually I respond by saying "NO, no blood test".

Well, tonight when I said "Yes, blood test" she stopped in her tracks. She put her hands over her ears - like she didn't want to hear the words I was saying.  Then, she started scratching at her arms in distress.  I was shocked.  She obviously knows what a blood test is, and that she doesn't like it.

I hate that we have to get blood taken, but it has to be done, so do it we will.

Wish us luck and stay tuned for the results.

Sunday, July 11, 2010

Frustration!!!

Tonight I was working on a new page for the blog - one that would give new readers a quick overview of 'how we got here'.  I had typed HEAPS of information about our story from the beginning, and about Ashlea's diagnoses - complete with links and references.  I had been working on this page for an hour and a half AT LEAST.  And then....

Then I went to highlight something and delete it.  Except that I accidentally highlighted ALL the text.  And deleted it.  Not deliberately - I was meaning to quickly delete a line of text but accidentally got the lot.

And what did blogger do?  The very second that I lost it all - before I had the chance to quit and hopefully revert to a previously saved version, it saved my work.  Saved my new work of nothing.  I have spent nearly two hours tonight working on a big pile of nothing.

Let this be a cautionary tale to all you bloggers out there!!

The moral to the tale?  Compose long posts in a proper text editor.  One that has an undo button.  I know - I should know better.


Rant over.

Friday, July 9, 2010

First concert!

This week is the first week of the school holidays, and it has been holiday club at our church.  Ashlea and Audrey both went to the preschool group, and Emma went to the K-2 programme.  The organisers and volunteers at church put so much effort into the activities, the kids all have a great time AND there is a free coffee shop for the adults while the kids are being looked after, which meant I had 2 whole hours without children EVERY day this week.  I know - unheard of.

Today was the last day, and at the end the preschoolers came into where the coffee shop had been set up in the church, and stood on the stage to sing a song for the adults.  When I realised what was happening I became rather alarmed at the thought of Ashlea having a very public meltdown.  I had visions of having to rush up to the front and whisk her out of the church while she was howling.  I wasn't even sure if they would try and bring her in because of the chance she would lose it.  But, bring her in they did.  Rather than wheel her in, her carer carried her in and helped her stand on the stage with the other children.

So, my Miss Ashlea stood on the stage with the other kids while they all sang their song.  Sing she did not.  Actions she did not.  BUT, she did keep the craft hat on her head that they had made, and she did not scream.  At one point she did have her hands over her ears and looked like she was about to let fly, but she didn't.  She stayed on the stage with the group and was far less disruptive than Emma ever was in her first concert.  Audrey was almost as far down the other end of the stage as possible from Ashlea, so I had to keep looking from one to the other.  Audrey did a great job of singing and doing the actions - and waving to me.  It was a great way  to finish the week.

Ashlea's first concert - I seriously could have bawled my eyes out to see her standing up there with the other kids.  

I have to say a huge thank you to all the organisers of the holiday club for all their efforts, but especially to the preschool group who welcomed Ashlea and provided a carer for her each day.  

PS I didn't have my camera, but am really hoping someone got a photo ...  I will post a pic if I can track one down.

Wednesday, July 7, 2010

Special Exposure Wednesday: Pink Click!

Last Friday my, sorry, Ashlea's new computer arrived. We haven't yet received the intellikeys, but I did find this switch based game in the back of the cupboard. We have had it for months but didn't bother installing it on the old computer. We installed it on the new one - and lo and behold - another little computer nerd in the making!!










And here is one of us from the computer's point of view...




Carolin made this little video as well (and uploaded it which is why blogger thinks this post is from her - but it is really just me!).

So, here are the 3 little computer geeks in the making...



Yesterday when I was checking out goings on in the blogosphere, Ashlea crawled up to me and instead of saying her usual:
I need to give a cuddle (code for Pick me up. Now)
She said:
I want a pink click!!

Don't forget to check out all the rest of Special Exposure Wednesday here.

Monday, July 5, 2010

Video Fun

Firstly, I just want to say thank you for all the kind words about last Friday's post. I know many of you have experienced similar things and my heart goes out to you all.

It was lovely on Friday afternoon to go and pick Ashlea up from preschool and give her a great big hug. Incidentally pickup time pretty much coincided with the time of the original event. It was lovely to hold her and squeeze her, and have our regular post-preschool conversation (it is always the same!).

So in light of celebrating how far Ashlea has come here is a video Carolin shot very quickly yesterday afternoon. It is Ashlea playing her new favourite game: Hide and Seek.



And for those who missed it the first time around, here is a copy of the video I posted a few months ago of Ashlea using her kaye walker. A number of people were unable to view it so I have changed its format and put it on youtube. Can you tell my Ashlea's new computer has arrived???



PS Because Carolin uploaded the hide and seek video to youtube and blogger, this post says it was written by her - but its really still me!!

Friday, July 2, 2010

4 years ago today

4 years ago today was THE DAY.  The day I thought Ashlea was going to die right then and there in front of me in the NICU. In hindsight, it was actually not her sickest day in the nursery at all - although she was very ill - rather it was the day that broke me.

After 10 weeks of living on a knife edge - where one minute Ashlea was doing well, the next she was critical, then she was doing well again, then she was sick again, we had finally gotten to a point where I thought we were over the worst of the drama.  That is always a dangerous place to be don't you think?

2 days prior (Friday 30th June), I received a call from the nursery to say that Ashlea had had 'a bit of a setback' and had been moved back into ICU and re-intubated.  WTF???  This couln't be happening again.

I rushed to the hospital and discovered that the 'setback' was actually almost a full arrest.  She had had an apnoea but it wasn't one that just required a little bit of oxygen, or even oxygen given via a bag and mask.  It required full CPR (complete with chest compressions) and re-intubation to get her stable.  She missed out on the shot of adrenaline by a whisker.  Since then I have seen the resuscitation charts on the wall in Emergency, and I am shocked by how far through the list of procedures she got.

Once she was stabilised and they were able to get a blood gas, they realised that her bicarb levels were effectively zero (unreadable) and her pH was 6.85 (should be 7.35 - 7.45).  She was VERY acidotic and received countless bicarb infusions over the next few days to try to correct the imbalance.  As the weekend wore on she remained acidotic and her dependance on the ventilator increased.  She was taking no breaths of her own above the vent.  The vent was taking at least 70 breaths a minute for her to try and correct the acidosis.

This continued into the Sunday morning, at which point 10 weeks of hoping and praying and living on the edge came crashing down on me. 

How was it possible that we were back here again???  She had made it all the way out to Special Care.  The next stop was meant to be home - not right back to the beginning.

Her nurse that Sunday was a lovely, level headed, calm man named Noel whom I will never forget.  I asked him what would happen if she didn't make it.  How long would she have?  Where would 'it' all happen?  In the nursery?  In the 'special room' out the back?  In a family room on the ward?  How long did he think she would live after taking her off the vent?  Could we have family members visit?  Could we take photos?

You know you are in trouble in the NICU if your nurse answers these questions directly.  If your baby is not critical they are the first to point out that you shouldn't be thinking like that.  Not that day.  Noel answered my questions honestly.  He knew as well as I did that it was possible she wouldn't make it.

All the while, Ashlea was incredibly unstable in spite of being on full life support.  She kept dropping her heart rate and her oxygen saturations into the 40's.  After you've been in the nursery awhile you know that isn't good.  For anyone who hasn't been in the NICU or PICU, oxygen should be close to 100% and heartrate around 140 (for a baby).  What other options are there when you are still having apnoeas despite being on full life support???

In the middle of all this instability and my discussion with the nurse, Ashlea had a more serious 'moment'.  THE moment.  In hindsight, I think her breathing tube was blocked with secretions and she just needed suctioning, but AT THE TIME, I was thought she was dying.

All of a sudden her heartrate and oxygen plummeted (to the low 40's), all her alarms were sounding - you know that high pitched fast one that 'dings', plus the ventilator alarm was beeping with the words apnoea flashing on the screen.  I thought she had stopped breathing.

Usually if it is something minor the nurses can attend to the situation themselves, but Noel quickly summoned the doctor over so they could both work on her.  That convinced me that she was having another episode like the Friday before and would require full resuscitation.

I rarely had complete meltdowns in the nursery, because I'm not really a complete metldown kind of person.  I'm a hold it together kind of person.

Not that day.

I LOST it and started sobbing hysterically.  One of the other nurses asked me if I wanted to go outside.  Was she serious?  I thought my baby was going to die - there was no way I was going outside.


I wanted to scream at the top of my lungs:

NOT LIKE THIS.

All I could think was 'Not like this. She can't die like this.  Murray isn't even here (he was dropping Emma off to his mum's).  It can't happen like this. Not now.  Not like this.'  My mind was screaming this at me, but I had my hand clamped over my mouth so the words couldn't come out.  Even in my hysteria I was mindful that I wanted the doctors to be able to concentrate on what they were doing, and not be distracted by me.

The other thought screaming in my head was:
JUST GIVE HER TO ME.

Let me hold her.  If this is it, just GIVE HER TO ME.  I had been obsessed right from the beginning that if someone was going to die, it was going to be IN MY ARMS.

Most times when babies die in the nursery, it is a 'planned' thing.  That sounds awful doesn't it?  But usually it is obvious that a baby is not going to make it, and at a time that is suitable to the family, life support is withdrawn and the family are able to hold their baby for his or her last moments.  I had been lulled into a false sense of security thinking that if she was going to die that is how it would happen.

The events of that weekend completely devestated me.  The cold hard reality that she could die and I might not be there was utterly horrifying.  I even asked Noel if that ever happened.  Do babies ever die in the nursery and the parents aren't able to get there?  And if so what happens?  Sadly occasionally it does happen, and in that case one of the nurses will hold the baby in their final moments.  How utterly heartbreaking.  Even thinking about that still reduces me to tears to this day.

Ashlea continued to remain ventilated for the next 7 days.  It was during those days that I realised just what we were in for, that our lives were forever changed.  That is when we found out that her kidneys weren't going to recover and that she would need a transplant.  We even discussed with her doctors that if her kidney failure was going to be quick that maybe we should switch from intensive care to palliative care.  Fortunately her kidney specialist's initital prognosis was that she wouldn't need a transplant for 2 - 4 years, so we continued with her treatment.  At that time we also discussed 'developmental outcomes' with her doctors.  It became clear to us - although I suspect it had been clear to the doctors from much earlier on - that the chances of Ashlea being 'normal' were very slim.  Her chance of cerebral palsy and intellectual impairment were significant, we already knew she had a vision impairment and that she would need a kidney transplant.

By the end of the week I was shattered.  For me, it was a turning point.  A breaking point really.  All the things that I had thought were secure were all whisked out from under me.  The illusion of control was gone.  I was left with cold hard reality.

Bad things happen.  They can happen to anyone at anytime.  There are no guarantees.  The worst could still happen.

So there you have it - the events of 'that day'.  As I have been thinking about 'that day' during the week, I have realised that it is more about me than about Ashlea.  It is not that it was her worst day in the nursery, it was MY worst day.  My day of reckoning.  Of coming face to face with reality, and the fact that we mere mortals have so little control over the events of our lives.

PS Big hugs to those of you reading who have had similar days - worse days than this.  I know who you are!