Tuesday, May 31, 2011

Kidney Review

Ashlea had a kidney review today.

Surprisingly her creatinine is slightly lower again (down to 349 from a high of 387 two months ago).  Despite that we are still on track for a transplant in November.  I think the doctor was pleasantly surprised that Ashlea's creatinine was stable - she had been expecting that Ashlea's numbers would be a lot worse and that we would have to bring the transplant forward.  The doctor is more relaxed now about us making it to November without needing dialysis.  The only problem with that is that our nephrologist will be on maternity leave at that time!  When I first met our new neph I was glad to see that she was young and would be unlikely to retire before we were finished at the children's hospital - I forgot to factor in that she was young and not done with having babies yet!  There are plenty of other kidney specialists on the team, but its never quite the same when the doctor you are dealing with doesn't know you personally.

The numbers from today:
Creatinine: 349
Urea: 16.8
Potassium: 3.4
Bicarb: 27
Sodium: 135

In spite of the slight drop in creatinine Ashlea's GFR is still only 10 (normal is over 90 - mine is 111), so it is still full steam ahead for the transplant.  While we were at the hospital Ashlea had some other pre-transplant testing done.  She had some extra blood work (clotting times, mantoux test, antibody levels, liver function) as well as the regular kidney blood tests.  She also had some x-rays to check her bone age and the severity of her rickets (caused by renal disease) and a pre-transplant ECG.  I must say that she did pretty well all things considered.  Ashlea hates procedures - always has done.  Even though she protested through all of them - she protested much less than she would have in the past.  She is becoming quite manageable even at blood tests now - she still cries, but doesn't thrash and scream and fight like a wild cat as in days gone by.

We have a pretty big week of appointments - today Ashlea had her kidney appointment, tomorrow we see our paediatrician to get a letter for our school application, on Thursday Ashlea is having casting for new AFOs as well as a physio appointment (plus a stopver in pharmacy and pathology just for good measure) and then on Friday I meet my surgeon. 

The one thing we don't have yet is the actual date of the transplant - apparently they are working that out at the moment so hopefully we will know soon.  Watch this space...

Friday, May 27, 2011

Ode to PMS

Prepare you ears,
Run for your life!
Each end of the month
Mum's gone fishwife.

Endlessly yowling,
Nagging and growling,
Screeching and squawking
Til everyone's howling.

Reach for the earplugs, get
Under the table,
Away!  Run away! As
Long as your able

Supplies of chocolate
Yes, keep them coming!
NO, not ones with fruit in
Don't think that will cut it!!

Remember with time your
Old Mum will be back...but
Months go by quickly so
Expect some more flack!



So, how was your week?

Wednesday, May 25, 2011

Special Exposure Wednesday: Sisterly Love





I don't know about you, but my girls are not 'sugar and spice and all things nice'. They don't sit and play quietly with dolls or colour in for hours on end. They run and rumble and screech and generally thunder through the house.

Even Ashlea likes to get in on the rumbling action. She is of course allowed to get away with a little more than the others. If Emma was being 'beaten up' like this by Audrey there would have been tears and cries of 'MUM, She hit me!', but because it was Ashlea Emma just had a little giggle about it and thought it was funny.

Hey look Mum - she's hitting me!

Anyone else got girls that are more "snips and snails and puppy dog tails"?

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

Sunday, May 22, 2011

Birthday Party SUCCESS

We had a great day yesterday having the girl's birthday parties.  The weather was absolutely gorgeous with not a cloud in the sky - I can't tell you how relieved I was about that - the idea of having two parties of 20 kids in my house on a rainy day was giving me nightmares!

Let me give you a tip for party at home success with lots of kids - hire a jumping castle.  That thing was worth its weight in gold.  The kids had a ball and I didn't have to organise any games or activities.  They came, jumped, ate, jumped, ran around and jumped some more.

Ashlea absolutely LOVED the castle and spent pretty much the entire day in there.





Audrey loved ripping through all the presents - she had that down pat this year (last year she was a little overwhelmed by it all).  This year she was a present opening machine.






The best-preschool-teacher-in-the-world came to the party - in her dress ups - and jumped on the castle with Ashlea.  We love her!  What are we going to do next year???



This year I didn't make the girls cakes.  Usually I love letting them choose which cake they want and then making it, but I just didn't have time this year.  Secretly when ordering their cakes I was hoping for a cake wreck but sadly it wasn't to be.

Ashlea made it all the way through Happy Birthday and even blew out the candles before losing it.  I think we can call that progress.  Last year she had to retire indoors for a bit of therapeutic In The Night Garden viewing.




After the morning shift we had just enough time to tidy up and have a cup of tea before the afternoon crew arrived.  The birthday girl...





We made party no. 2 even easier on ourselves by ordering pizza for the kids followed by another shop bought cake - sadly it was not a cake wreck either...


It was a great day and the children all had a wonderful time.  That jumping castle was money well spent.



Of course Ashlea's first words this morning were....

Can I go on the jumping castle?




[All photos by Aunty Carolin - I didn't have time to pick up my camera all day]

Friday, May 20, 2011

Wish me luck!

Tomorrow is party day - all 3 girls are having their birthday parties on the one day.

In the morning the twins are having the girls from their preschool class over, and in the afternoon the girls from Emma's class are coming.  I think we're having around 20 kids at each party.

Anyone got any good headache remedies for me for the end of the day??

The forecast is for cloudy weather but no rain.  I really hope that is accurate!!  We are hiring a jumping castle as it is something Ashlea can participate in with her friends - I doubt we will be able to get her out of it all day.  I am making the parties as easy on myself as possible - store bought birthday cakes (sob - I love making their cakes but I just don't have time this year), pizza, juice boxes and running around in the backyard.

Birthday parties for the twins are always a little bitter sweet - they are a great celebration of how far we've come, but they also prompt little twinges of 'what could have been'.  I think I sometimes try to have a great, big fun party for them to make up for the fact that they don't get invited to that many parties.  Even Audrey.  I think people feel that if it is too hard to invite Ashlea that it would be unfair to invite Audrey - the problem is that Audrey is the one who knows she hasn't been invited.  Hence the super, big inclusive party at our house so that people get to see Ashlea for who she is - a kid who loves to have fun at parties just like every other child.

I hope it is a great day - the girls are all really excited and have been counting the days.  If you ask Ashlea whats happening tomorrow she says "Jumping Castle....at the party".  She knows!

The twins had their 'flu shots this morning so we are really hoping for no nasty consequences like last year.  (I know - crazy day to get vaccinated - but of course it was the only day we could get into the vaccination clinic at the hospital).  I told the doctor it was not an option for anyone to have a reaction as we are hosting a party tomorrow.  As an aside we ran into one of the doctors at the children's hospital who had worked in the NICU when the girls were born.  It was lovely to see her - and she wasn't at all surprised to hear that Ashlea had had a completely unique, Ashlea-only reaction to last year's vaccine.  She knows Ashlea's history too well.

Time to go finish my party preparations - See you on the other side!!!

Wednesday, May 18, 2011

There's no reason why you can't ....

DONATE A KIDNEY TO YOUR DAUGHTER!!!!

Today I saw the kidney specialist and he said the magic words our family has been waiting to hear.

"I can't see any reason why you can't donate a kidney".

What a relief it is to have the 'stamp of approval'.  Actually I don't have the 100% stamp of approval yet as I failed the wee dipstick test (seriously - the easiest test of all), but they are pretty sure that I will pass next time so I am being retested in a couple of weeks.

This cheeky puss is getting a kidney from her mama...

Saturday, May 14, 2011

More Grrrr

Sorry, this post is going to be more whinging.

I am hoping that if I get it out of my system, I can get on and enjoy the weekend.

My 1st Grrrr is that yesterday the preschool freaked out and thought Ashlea was looking unwell.  Because I wasn't there to see how she looked, I took their word for it and arranged an emergency after school trip to the hospital for bloods and a quick once over.  Their verdict (and mine) - she's fine.  I don't mind that the preschool were worried and called me - I like that they supervise her closely and know what is and isn't nornal behavior for her - the Grrrr is that we ended up having an unnecessary hospital trip and blood test. 

The 2nd Grrr is that Ashlea's creatinine was actually slightly improved yesterday (363 down from 378).  I am not upset that Ashlea's creatinine is down, I am frustrated because I think I know why it is down.  Late last year Ashlea's dietitian decided Ashlea needed more protein in her diet.  I was worried that this would increase her creatinine, but I stupidly listened to the dietitian.  What happened?  Her creatinine has gone from 210 to 360 - and now that I have cut out the protein it has stabilised again.  I am frustrated beyond belief to think that this huge jump in creatinine could have been prevented by not following the dietitians adivce. 

The 3rd Grrr is that we got inconclusive results back from the girl's coeliac studies.  They all have the genetic typing that makes them susceptible to coeliac but they don't currently have antibodies in their system to say they are reacting to gluten.  While I am glad it seems that they are in the clear at the moment I am not sure if this means they are still at risk for developing it in the future.  I know some people will say you either have it or you don't, but surely with most things that are genetic there is a combination of genes and environment that come into play.  Does that mean that something in the environment could still trigger it?  Should we get Emma biopsied even though her antibody levels were low?  Can you imagine trying to get Emma to co-operate for something like that???

The 4th Grrr is blogger.  What is going on????  Sorry if any of your comments have been lost over the last couple of days - blogger has lost the plot. 

 Aahhh, that feels better.  Thanks for listening.

/Grrrr

Wednesday, May 11, 2011

Frustration!

Today I was meant to see the nephrologist and hopefully get the all clear to donate to Ashlea.

It didn't quite happen.  I got to the hospital only to find out I'd accidentally been booked into the wrong clinic.  At another hospital.  Of course there were no doctors on the ward that could see me other than registrars so I had to turn around and go home.

I have to go back next week - when the doctor will actually be in the hospital - and hopefully then I will get the all clear to donate to Ashlea.

Very frustrating.  Especially as I had taken the day off work for the appointment and will have to take another day off next week (don't you love clinics that only run on certain days of the week).

The day wasn't a total write-off though.  I got the last of my blood work done, picked up Ashlea's scripts from the pharmacy, cooked a roast for dinner, put on a load of washing, made a loaf of bread and sorted my laundry pile (yes it is so big that it requires sorting before you can even think about folding it).

After that whinge let me finish with a cute photo or two - here are some more pics from our time on the weekend with our kindred spirits.  We did some sight seeing in the city on Mother's Day.


The girlies...



These two are in love...



Emma was desperate to touch the Opera House...



You may notice that Ashlea is actually smiling in all these pictures.  A bit different to the last time we attempted an outing like this.






These two might also be in love...




I hope you all had a great Mother's Day too!!

Saturday, May 7, 2011

Kindred Spirits

Today I had the privilege of spending the day with some kindred spirits.


It was lovely to catch up with Jen and Sarah and some of their children today.

Jen flew all the way across the country to meet up with us!!

I think Murray thinks it's a little strange that people who have only ever met online before would go to such lengths to meet up. But these online friends - many of whom are now real life friends - have become my lifeline to navigating this land of disability that we all find ourselves in.  These friends are the ones who not only know what is going on with my child, but really 'get' it.  Of course I would travel across the country to meet them.  If I had the money there are some that I would travel half way across the world to meet up with!!


Here is an attempted photo of our girls together.  I couldn't get everyone looking at the camera - not sure if Jen or Sarah got a better one?


 Thank you lovely ladies for a great day - and thank you (and all of YOU) for your ongoing friendship and support.

Thursday, May 5, 2011

It's looking good...

I know I shouldn't count my chickens before they've hatched, or in this case my kidney before it's harvested....

BUT...

I have passed all the tests.

I still have to meet with the nephrologist (next Wednesday) and the surgeon (early June) to get the final OK, but so far it looks good.

Here are the results of my tests:

MAG3 (kidney scan) - showed my GFR is 111 (above 90 is good)
DMSA (kidney scan) - showed that my left kidney does 51% of the work and the right does 49%
CT (of kidneys and veins) - showed only one artery and vein to the kidneys
Glucose Tolerance Test - fasting BGL of 4.5 (normal is 3.5 - 5.4) and at 2 hours of 7.7 (normal <7.8)
Chest XRay - normal
Blood work - normal (even my cholesterol)

The two tests I had this week were the DMSA and the GTT.  The DMSA showed that my kidneys do actually share the load quite evenly.  The reason it looked uneven on the previous scan is that my right kidney sits lower and slightly on an angle so that the 2D scan didn't get a completely accurate picture.  Monday's 3D scan gave a better picture that showed my kidneys are the same size and working evenly.

The GTT I passed by a whisker, but the transplant co-ordinator wasn't particularly worried by that.  My fasting glucose level was very good, and he said the fact that my sugar was on the higher side of normal at the end of the test probably reflected the fact that I am only a little person - and regardless of size everyone gets the same dose of sugar for the test.  He said the equivalent would have been for a full size man to get 2 or 3 times that amount of glucose if it was size based.  I can tell you that I felt AWFUL during the test - it was by far the worst of all the tests.  The glucose made me feel sick in the stomach and woozy in the head.  I couldn't think straight!  Even when it was over I had to go home and lie down to recover.  Blech.

Can you believe my cholesterol levels were normal too?  Seriously - in spite of my love of the hot chip I have normal cholesterol levels.  Here's to more hot chips!!

In spite of saying a couple of weeks ago that I wasn't excited at the prospect of giving Ashlea a kidney, I am a little excited now. Not excited that she needs a kidney transplant, or that I have to go through surgery to give her one, but it is a relief to know I will be able to give her a kidney and hopefully spare her dialysis. Seeing the reality of kidney disease in adults when I went to the renal ward for some of my tests was a real eye opener. Kidney disease is for life. It can make you really sick. The adults up there looked really sick. I think I have been a bit sheltered at the children's hospital, because kids are just so resilient compared to adults. An adult walking around with Ashlea's level of kidney function would feel terrible. If I can help Ashlea avoid dialysis and some of the other side effects of kidney disease I am happy to do it.

It is an honour to be able to do it.

The next question I'm sure you all want to know the answer to is WHEN will all this take place?  That I don't know yet - but most likely one day in November...

Monday, May 2, 2011

Taken leave of my senses....

I think I've taken leave of my senses...





Did you notice the dates on the party invites?  Yep - I'm going to attempt TWO (both belated) birthday parties in the one day.

It seemed like a good idea at the time...., but now that the invites are out I'm getting a little nervous.

Wish me luck!!