Friday, April 29, 2011

Back to the Grind

School holidays are over and we are back into the grind of daily routine.

Sigh.

We had a very quiet school holidays - just hanging out at home, staying in our pyjamas waaay too long each day, and occasionally going to the shops or the movies.  It was very nice.

We are back in full swing now.

I have the remainder of my kidney testing next week.  On Monday I have a DMSA (renal scan with radioactive isotopes), and on Tuesday I have the Glucose Tolerance Test and an ECG.  The following Wednesday (11th May) I see the renal physician who will make the big pronouncement - Yes or No - on whether I can donate.

It will be a big week for results.  We should also get back Emma and Audrey's blood results for their coeliac studies.  Poor Emma did not do well at the blood test.  It would seem she has inherited the double whammy - my difficult veins and Murray's predisposition for fainting at blood tests.  You should have seen the colour drain from her little face as she said to me "Mummy I don't feel very good".  Fortunately we were able to lay her down in time - poor little chicken.

We were meant to get a great many things accomplished during the holidays - including 2 full weeks of brushing therapy for Ashlea.  Unfortunately we fell off that wagon fairly early on - I kept forgetting between the busyness of botox, appointments and being radioactive.

Oh well, plenty of time to start that tomorrow.  Or the next day.  Or ...  sometime.

Monday, April 25, 2011

Fairies in the garden....

Over Easter we found some fairies in our garden.

Well, one fairy to be exact...



And look who else we found...


It's Upsy Daisy.  Here she is giving Iggle Piggle a great big Upsy Daisy kiss!

Here they are again...



Upsy DAAIIISSSSYYYYYYYYYYYYY....



Apparently Upsy Daisy likes to sky dive.  Who knew?



And fairies really can fly...


Isn't that a pip?


Even though I posted this on Monday I am hooking up with Special Exposure Wednesday.  Click here for more great photos.

Saturday, April 23, 2011

Sorry

Sorry - I'm going to be faffing about with the blog tonight.

Often I don't tag my posts, but I want to go back and add tags to a whole bunch of posts so I can search for things easily.

If you read this in something like google reader it may look like I've published heaps of posts...but I haven't.

Although I have added a couple of new pages to the right - again so I can easily find things!  There is a page with videos of Ashlea, and one of photos of her, and I want to add a photo page for Emma and Audrey too.

So....sorry for the messing about!!!

Preliminary Results...

I managed to speak to the transplant co-ordinator on Thursday afternoon and get some preliminary results from my kidney tests last week.

My blood work isn't all back, but my basic kidney function tests are.  My creatinine is 65 (normal - Ashlea's is 387) and my urea is 2.9 (normal - Ashlea's is 20).

The nuclear medicine scan of my kidneys - which I think is called a MAG3 - showed that my kidneys are working very nicely thank you very much.  My GFR is 111.  Anything over 90 is good. I think the 111 is 111ml/min - the rate at which my kidneys filter.  Ashlea's GFR is around 9.

It also appears from the CT scans that I have only one artery and vein to each kidney.  This is a good thing because it makes the surgery easier and also means that the artery is more likely to be nice and big.  If you have more than one artery or vein they can be smaller and therefore more susceptible to clotting - which can result in part of the kidney not surviving after transplant.

The only thing that did show up as a little unusual is that my kidneys are not sharing the load equally.  My left kidney is larger and does more of the work - it does 64% and the right, smaller kidney does 36%.  I thought this may count me out straight away, but the co-ordinator said that it should be OK, and that they would take the smaller kidney for Ashlea.  I hope they are right and that my smaller kidney will be enough for her.  In a way it would be a bit of a relief knowing that I will be retaining two thirds of my kidney function.

Of course because of this discrepancy they want to double check the result so I am going to have another (different) nuclear medicine scan - a DMSA.  They will inject me with another isotope and then wait for my kidneys to absorb it.  Once absorbed they can scan the kidneys to see how they are working.

I know I shouldn't get my hopes up, seeing as these aren't the final, official results....but...I am kind of thinking at this point that I am IN.  My kidneys are working well, they are not so unbalanced as to rule me out, the CT scan was normal, the blood work appears normal so far.... I just need to pass the Glucose Tolerance Test and have an ECG.  I am not expecting to fail either of those.... so I am starting to think.....this might actually happen!

Thursday, April 21, 2011

Happy Birthday Ashlea and Audrey

My little tiny babies turn 5 today. How can that possibly be???

Of course I tried to get a twin photo for their birthday didn't I? Why I persist with that I don't know.

These are the best I got...








Neither of them were particularly interested in looking at the camera...





And once she realised she was more flexible after the botox Ashlea kept trying to take off...



After that things really went downhill.  Ashlea discovered that if you keep doing this....



...that the photographer (Mummy) jumps up and down.  That was a good enough reason to keep doing it...







At that point I gave up.

Happy birthday gorgeous girls!!!

Tuesday, April 19, 2011

Radioactive Woman


Today was the first day of my kidney testing. If I do say so myself I coped quite well. I was worried I would get really anxious, but it wasn't too bad. The worst part was all the needles.

First up was the nuclear medicine scan.  I got injected with a radioactive isotope and was then scanned for around half an hour as my kidneys filtered it through. It was a pretty easy test - all I had to do was sit still.  By far the most off-putting part was that the isotope arrived in its own lead container and the injecting syringe was also encased in lead.  Kind of freaky that they were still allowed to inject that into my body.

After the initial scan was finished, I had to go back at 2 and 3 hourly intervals for a blood test.  During that time I also had a whole lot of other blood work done and a chest x-ray.

I then had a four hour wait until my CT scan and seeing as I wasn't allowed to be near small children or pregnant women due to being radioactive, I went and sat in the autumn sun at the park and read a book.  While I was doing that Murray took Ashlea to botox  clinic.  Just quietly it drove me a little nuts not being there, but they managed just fine without me. She got botox in her hamstrings and calves again - and as usual the midazolam worked a treat and she coped really well.

Then it was time for me to head back to the hospital for my CT scan to check the arteries and veins to my kidneys and take some pictures of the kidneys themselves.  That was probably the most unpleasant of all the tests because the dye they inject into you makes you feel decidedly weird - you get a hot flush through your body as the dye moves in and you seriously feel like you are peeing your pants (although thankfully that is not the case). Fortunately the feeling doesn't last long!

I don't know how many of you have been to the hospital I was at today (which I'm not going to name...), but I have got to say I think it is surely a contender for the ugliest building in all of Sydney.  The outside is a hideous concrete block and inside the colours and decor are revolting. Who designs these things???  As a patient it doesn't feel like much thought was put into the environment's impact on patients. The CT room was particularly horrid - and I can only imagine what a truly terrifying experience it would be to be in there knowing your doctor was looking for something serious.  The whole environment just adds to the stress of the experience. The renal ward was a bit of a shock too. Not so much the decor there, rather the reality of kidney disease in adults. There were SO many patients up there, and they all looked sick. Kids don't seem to look as sick as adults even when they are. Just as I was thinking to myself "Thank God I don't have to come here on a regular basis" I realised that Ashlea will be treated there as an adult....and I will have to go there on a regular basis. Funny how that thought still pops up. It drives me nuts knowing people think "Thank God I don't have to go through that" when they hear about Ashlea - and yet I am still guilty of thinking the same thing about others.

Now the wait is on for the results. Hopefully the kidney scan results will be back by Thursday - otherwise I will have to wait until next week with all the public holidays. The CT report takes awhile to come back, and some of the blood work can take awhile too. I'll keep you all posted!

Thanks to all of you who prayed for me, and thanks for all the f*cebook support too - nothing like having your own private cheer squad in your pocket!

image

Sunday, April 17, 2011

New Level of Cheekiness

Ashlea is turning into a cheeky little monkey.

Yesterday Murray took Emma and Audrey to the movies.  While they were watching Rio, my sister and I went shopping with Ashlea.

After awhile Ashlea got bored and wanted to go home.  We weren't ready to leave yet - mainly because we were out shopping for her birthday present and hadn't bought her anything yet.

Ashlea whined for a bit. She grizzled and threw herself back in the wheelchair.

She tried saying it's time to go home repeatedly.

When none of these things worked she decided to yell.

Not just random yelling though.  Clever yelling.

Stop It she yells.

Let go of me.

Help!!


All I need her to learn to say now is you're not my mummy and we'll be in real trouble!!!

Friday, April 15, 2011

Potential Living Related Kidney Donor

Today I received my information pack about all the medical testing regarding Ashlea's kidney donation.  All my pathology forms are stamped Potential Living Related Kidney Donor.  Somehow it makes it all seem much more real seeing those words in print.

Here is the schedule for the testing:

Next Tuesday I am to have a nuclear medicine scan in the morning & a spiral CT in the afternoon.  Sounds like a fun day hey?  The nuclear scan involves having radio-isotopes injected into me and then lots of scans done of my kidneys.  The paperwork for the CT scan has the word 'angiogram' written on it so I am wondering if it is a little more involved than just lying still for a scan.  I know they inject you with dye to get a good look at the arteries and veins to your kidneys (FYI - it is better to just have one artery to your kidney - it makes the surgery easier).

Did I also mention that that is the day Ashlea is having botox?  I'm a bit annoyed that some of the tests are next week because I am on holidays from work next week and was hoping to RELAX and not have too many stressful things going on.  Obviously I am not meant to be relaxing!

On the 3rd of May I then have a huge amount of blood work done, a chest x-ray, an ecg and a glucose tolerance test.  After all the tests are done I meet with a nephrologist (11th of May I think) to get all the results and (hopefully) the green light to donate, and after that I meet with my surgeon.  Now that makes it seem more real.

When I spoke to the transplant co-ordinator I asked him if I would need to fatten up before the surgery - for those that don't know me IRL I'm a skinny little runt - and he thought probaby not - which is a relief as I am NOT a comfort eater.  He said I would probably actually be a good sized donor for Ashlea - if they were using Murray's whopping great kidney they may have trouble closing her up after the surgery, and they may also have to artificially elevate her blood pressure for awhile to keep the kidney perfused.  So maybe being a skinny little runt will come in handy for once?

I will let you all know how it goes.

For those of you who pray now would be a good time to start.  I am not good with medical tests, and I know I will be incredibly anxious for some all of them.

Wednesday, April 13, 2011

Little Blossom

Here is a picture of my little blossom sitting among the blossoms.



It's Autumn here and the jasmine next door is dropping its flowers into our yard.

Sounds pretty doesn't it.  You should probably know that we don't do garden maintenance in our house, so said jasmine is 4 or 5 metres high and completely out of control.  For a couple of weeks a year though it makes for fun photos.

And yes I do confess to staging the photo.  Ashlea's hair was brushed in anticipation, and I do confess to throwing blossoms at my child to get them in the photo with her.  

An un-staged photo usually turns out something a little more like this...



Gives new meaning to the term 'bad hair day' doesn't it.

Sunday, April 10, 2011

Ashlea update at church

Today Murray and I were interviewed in church to give people an update on how things are going with Ashlea and to let them know about her upcoming kidney transplant so they can pray for us.

For the occasion I made this video of Ashlea - to give everyone a little glimpse into her life and show them how far she has come.







If for some reason you are unable to view the video here is the youtube link:

http://www.youtube.com/watch?v=6kpnp0kq2wY

Even though I love to talk I don't love public speaking so I was very nervous!  After asking us a bit about Ashlea's background and list of current issues, Alistair (the minister) asked us what we had learnt as Christians through having Ashlea in our lives, and also what could they pray for us. I'm going to include both answers here - in case you are interested in what I have learnt or want to pray for us.  All prayers gratefully accepted!!

What have I learnt as a Christian?
The first big lesson I learnt was when the girls were still in the NICU.  It was a shock to learn that God is in fact the one in control of this world - not me.  As Christians we say that God is the one in control, but we act like we are in control and we make our plans and do our things and expect God to come to the party and make everything happen the way we want.  It was a shock to be confronted by the reality that we mere mortals have very little control in this world.  When the girls were in the nursery there was nothing I could do (other than pray) that would have any effect on whether or not they survived.  It was a big shock to be reminded that God is the one in control.  He is the one that determines how many days each of us gets and how we spend those days - and it is His right as the creator to determine these things.


The most important thing I have learnt is what is most important in life.  It isn't getting a good education, a great job and lots of money.  Ashlea is not going to achieve any of those things.  And you know what?  It doesn't matter.  The most important thing is knowing God.  The most important thing is whether or not you will be with Him in heaven one day.  It doesn't matter that Ashlea won't achieve any of those 'worldly' successes because she is known and loved by God. She will be with Him one day.


I have also learnt what it means to look forward to that day.  Before Ashlea I didn't think about heaven much, now I think about it all the time.  As Christians we know that Ashlea will be healed and whole when she gets to heaven.

At that point I stopped talking as I was starting to get a little teary - talking about heaven always does that to me - so I didn't say the next bit, but I'm going to say it now, because it's less embarrassing to cry over your keyboard than to cry in front of the entire church.

Just imagine what it will be like for Ashlea when she gets to heaven.  She doesn't even realise how good it is going to be.  


Imagine her in heaven.


Imagine her in a transformed body.  


Imagine the moment that she realises she is healed.


What can people pray for us?
- that I pass the medical and can give Ashlea a kidney
- that Ashlea's kidneys hold out until the transplant so that we don't need to do dialysis
- that everything will proceed smoothly with no complications
- for Murray who will have to juggle the logistics of looking after Ashlea while she is in hospital, me after surgery and Emma and Audrey at home
- that we would be able to continue to trust God through this

Friday, April 8, 2011

Random questions you may know the answer to...

Question 1 Mic-keys
As you know we are new to  the mic-key - so we got a big shock the first time Ashlea's fell out.  It fell out one Thursday.  Then again on Friday.  And again on Sunday.  Each time the balloon was empty - so I tested it by filling it with water - couldn't find a leak - and replaced it.  After the 3rd time I put a new button in and  we haven't had any further problems.

My question is - how long should a mic-key last?  I think this one lasted 4 months.
Also, why did the balloon keep deflating even though I couldn't find a hole?  I tested my theory by filling the balloon of the old button with water and keeping it in a jar (as you do) - and a week later it is still full of water.  But as soon as you put it in her belly it loses the water.  Anyone know what's up with that?


Question 2 Coeliac Disease

Anyone know much about coeliac disease?  One of the interesting things that our tissue typing (for Ashlea's transplant) showed up was that Murray is genetically susceptible to coeliac disease.  The twins have also inherited this susceptibility (there are 3 HLA types associated with coeliac and he and the girls have all of them).  None of them have any symptoms though.  Emma on the other hand refuses to grow and spends a LOT of time on the toilet (sorry - TMI I know).  I am wondering if she has inherited this susceptibiltiy or if in fact is coeliac.  Any thoughts???  What a hassle that would be.

Question 3 Writing / Typing at School
Ashlea starts school next year and it has only just occurred to me that she can't write.  She is unlikely to ever be able to write.  Her ability to learn and understand will far outstrip her physical ability to write.  Which begs the question - what is she going to do at school???

Will she type?  Should I be looking at getting some equipment for her?  A computer?  A gadget of some sort?  I really don't want to 'waste' time trying to teach her to hand write - I would rather she understood the concepts of letters and reading and used an easier method to get them on paper.

Any thoughts?  I know many of you have school kids with phsyical disabilities.  What do your children do as an alternative to writing?

Question 4 Phone etiquette
Why do people think it is OK to talk on their mobile phones while using public toilets?  Seriously?  I work for a university, and a number of times this semester have had to listen to student's conversations while they are using the bathroom.  Seriously wrong.

Anyone got any answers for me?

Tuesday, April 5, 2011

Developmental Assessments

I received the girls' developmental assessments in the mail today.  They really didn't tell me much at all.  Why am I always surprised by that???

Audrey's assessment showed that she is pretty much smack bang in the middle for everything they tested.  They did however point out that 53% of extremely preterm infants go on to have learning difficults regardless of intelligence so I guess that is something to watch out for at school.

Ashlea's report said that her capacity to learn exceeds her physical abilities and that she would be best placed in a supported unit for school next year - which is what I told them I wanted it to say so we can apply for her to be in the physical support unit at our local school for kindergarten.  The report specifiied physical support class over intellectual support so that was good - that is what we want.

Emma had parent-teacher interviews last week too so I can even give you an update on her.  She is acing maths and average at everything else.  Its funny - I thought that because she's a girl she would take after me at school - good at reading and average at everything else.  She seems to take after her dad - who has a freakishly intelligent brain for maths (used to be a member of MENSA) but struggled with reading and comprehension.

It's funny how in the early days I would hang on every word of the girls's assessments.  The results could determine the course of my mood and would often trigger that sense of grief and loss.  Now I just think WHO CARES.  It's just a piece of paper.  It will be useful for our school application but that is all.

I think we can safely say I've made progress!

In other news.... it's 3 days until the school holidays!  I can't wait.  I've got the second week off work - who wants to come over for a cuppa and a play in the cubby???

Friday, April 1, 2011

Unravelling

I'm totally unravelling at the moment.

At a rapid pace too.

I feel like everything is too much and I can't cope. 

The funny thing is that on the outside it looks like I'm coping - I'm working, the children are getting to school and preschool, life is continuing as it always does.

Except that the cracks are starting to show.

I just feel so stressed and like I can't take much more.

I'm not sleeping well.  I'm not eating.  I hardly ever cook proper meals, I never clean, there is washing piled almost to the ceiling.  Its like I can deal with the big stuff - I am giving Ashlea a kidney - but while I'm dealing with that I can't deal with regular, ordinary, everyday life.

There is just no damn respite from life!!

I know there are actual respite options available - but I don't trust them with Ashlea, and its not Ashlea I need respite from. It's regular life that I need a break from.

I suspect I am not the only one who feels like this - I can think of at least 3 or 4 fellow bloggy friends who I imagine are feeling pretty similar based on what's happening in their lives at present.

So.  Anyone else want to confess to not coping and join me in some online therapy?  Or perhaps in a collective nervous breakdown???