Monday, April 27, 2009

Preschool Days

Today was Big A's first day of preschool. She LOVED it. Didn't give me a second look - just said "Bye Mum" and took off playing. I can't believe my little ex-27 weeker who weighed just 820gm at birth is now a big girl ready for preschool. She had a great time and is looking forward to going back next week (always a relief).

After dropping her off we came home as we had a day with NO appointments. I felt like I had so much time. I did craft with E, tidied and vacummed the house, hung out a load of washing, unpacked the dishwasher...and I wasn't rushed at all. Just pottered about and got it all done. Is this why my friends are all less stressed than me? Is this the key - actually having time to do things without rushing madly. It was all so orderly.

It felt a bit strange to go to preschool this morning and meet Big A's class and the other parents. This is the same class Little A will go into next year. I often feel a little conspicuous when I have Little A with me, I sometimes feel like "that mother" that everyone else looks at but doesn't want to be. But I have to confess that this morning I committed the cardinal special-needs-mummy sin. I was one of the mummies on the other side doing the judging. I saw another mother dealing with a very difficult child and I thought to myself -

I could never cope with that!

I can't believe after everything we've been through I can still think that about another child. I hate it when people think or say that about us. It shows that they are not seeing A for who she is and what she can do - they are only seeing the difficulties. And yet I still thought that about this little boy.

To that other mother - I am sorry. Hopefully I can get to know you while our children are in preschool together - and hopefully I can get to see your little boy for who he is, not for his behaviour.

Friday, April 24, 2009

Freaky Friday

Do you ever have one of those days? Sometimes I wonder if it is just me that has 'those days' - most of the people I know don't seem to have such chaotic lives! Is this just random chaos or I am the common link???

This morning I was attacked by my clothesline. As I was hanging out the washing I thought the line felt a bit wobbly but when I checked it it seemed fine. Anyway I kept hanging out the washing and then this happened...

The post broke about a foot off the ground and the whole thing fell over! When I rang M and my sister to tell them what happened they didn't give me much sympathy. I think the thought of me being found pinned to the ground by the clothesline was too much for them and they couldn't stop laughing. I wonder if that would get me a Darwin award???

Not long after that we were all back inside when E informed me that Big A had locked herself in our bathroom. When I went to investigate I found that this was in fact true. Big A was inside and had locked the door and couldn't unlock it, and I couldn't open the door from the outside. My sister told me to poke something through the hole in the door handle. I found what looked like a small screw hole on the side of the door handle and tried shoving all manner of things down there to open the door but with no luck. By this time A was quite hysterical. I decided to call the fire brigade as I thought that would be the quickest way to get her out (when they asked if they needed to come using lights and sirens I quickly said NO). But then I noticed a hole in the middle of the door handle (which I hadn't seen before) and lo and behold.. SUCCESS! I was even able to ring the firies back and tell them not to come. So, some lessons for you from this experience...

* pushing flat lolly pops under the door is a fantastic way to soothe a hysterical child

* if someone is locked in , a kebab skewer is perfect for shoving down the lock to get them out...(here is a pic of the hole and skewer just in case you find yourself in a similar position).

Who knew the handles had a little hole just for that purpose? I have learnt something new AND useful today!

The day just got better and better after that. The girls and I went and had our 'flu shots. Then I took them to the shops to buy new lunch boxes (Big A has her first day at preschool on Monday). Usually we have a good time at the shops, but today Big A had a colossal tantrum and screamed through Big W and Medicare. After more misbehaviour in the bank I told her there would be no donuts as she hadn't behaved well enough which resulted in another tantrum that lasted all the way back to the car. So if anyone saw an exasperated mum pushing 3 blond children - one of them screaming hysterically - through Macquarie Centre today - that was me. HI!

So, is it just me? Am I the common link in the chaos??? Or do other people have days like this too? I'm going to bed.

Tuesday, April 21, 2009

Birthday Flashbacks

Today is the twins 3rd birthday. 3 years ago today I was told that my twins only chance for survival was to be born, in spite of the fact I was only 27 weeks pregnant. I will never forget that feeling. At this exact time of writing the girls were being stablised in the NICU and I was up on the ward recovering from my c-section and trying to comprehend the fact that my tiny babies had been born so prematurely.

From talking to other mums of prems or babies who were in the NICU after birth, I have realised it is 'normal' to have flashbacks at birthday time. My flashbacks don't usually revolve around their birth as that went relatively smoothly, mine usually focus on stressful events (ie near death moments) in the nursery. This year I haven't had too many flashbacks, but I do still think about their time in the nursery. I can't believe 3 years have gone by - it seems much more recent. There are some moments from that time that will be with me forever.

For those of you who weren't there at the beginning, here are some flashback photos for you...
Little A at birth...all 570gm of her:

Big A at birth...all 820gm of her:

At 9 weeks old (still 3 1/2 weeks off their due date - I think Big A was around 2kg and Little A was 1kg).

Both of them on their first birthday:

And now as big 3 year olds...(I know Little A has her eyes shut but it is a great shot of her I thought I'd put it in anyway)

Sunday, April 19, 2009

Party Pics!

The girls had a great time at their party yesterday. Here are a few pics....

Opening presents...

Blowing out candles...

Most important - eating cake!

Friday, April 17, 2009

Cake Making Day!

Tomorrow is the twins 3rd birthday party, so I have spent the day making their cake. Of course I am going to post a pic - and just for the fun of it I am going to post pics of ALL the cakes I've made for birthdays recently.

This is the cake for tomorrow...

This is the twins cake from last year - this one was nice and easy to make...

And here is E's cake from this year...

E's cake from last year...

E's cake from the year before...

And the ice cream cake we made for my sister C earlier this year (this was my favourite - to make and to eat)...

So now you're up to date with all my cake achievements. Thankfully there are no more birthdays for awhile!

Thursday, April 16, 2009

Walker Trials

Today we tried out some more walkers at the Spastic Centre. It truly was a trial as Little A was NOT in the mood for co-operating.

First up we tried the Gaiter Trainer which I had hoped would be good as it is lightweight and cheap (relatively cheap anyway at around $2000). It doesn't have a bar between the legs - only a harness - which turned out to be NOT at all supportive for Miss A. She slumped down and toppled over and it didn't work at all.

Next up we tried the Mulholland Walkabout. She stood up a bit better in this one, but couldn't really manouvre it around at all.
She started out in a good position in it...

But ended up slumped forward fairly quickly...

Last of all we tried the Mini Walk. The physio was initially sceptical about this one, but it turned out to be reasonably easy for A to manouvre. It probably isn't quite supportive enough in that her walking position isn't ideal (according to the physio) but it is easy for her to get in and out of AND she can actually move herself forwards and backwards in it (something she hasn't been able to do in any of the others). So what do you think is most important - walking position or ease of use??? The physio obviously would choose walking position, but for me I think ease of use wins hands down. If it is too hard to put her in I know I won't use it as often as we should. Also one of the things I love about having a walker is that it gives Little A the ability to participate in play with her sisters - particularly when they are all outside together. That is why I think ease of use is so important. One (big) disadvantage is that she can't stand at a table or activity in this one as the bar / frame is in the way.

Here is a pic of her walking in it...

So, any thoughts on what is best??? We have one more to try, the 'Kid Walker' which I think is fairly new - we are trying that one in 2 weeks time. After that I think we will make a decision.

Tuesday, April 14, 2009

Ho' Dow'

No, we are not going country and western and having a ho down, 'ho dow' is Little A's newest phrase. It is her way of saying "hop down", as in "I want to hop down from the high chair please." The last 2 days instead of whining to get down, she has announced "ho dow" when she has had enough. What an achievement in communication!

As I mentioned last week, Little A had her regular kidney review today. It was uneventful. It appears that her kidney function has stabilised for the moment with a creatinine in the 190's giving her a kidney function of around 21%. All her other labs were similar to last time. Her liver function is still slightly abnormal (and has been for over 2 years now). We still don't know why, but while it is only mildly abnormal we are going to ignore it.

Dr H always asks how A is doing otherwise and often I don't have much to report as sometimes progress is so slow. But this time I was able to tell her how well she is doing with her crawling and speech development. It is so nice to have positive things to report - and nice for Dr H to actually see some of the crawling and talking - usually all she gets to see is screaming at the blood pressure cuff (although there was plenty of that too). The question of when she will need a transplant remains a mystery as usual - but for now things are STABLE and we are HAPPY.

Sunday, April 12, 2009

Happy Easter

Today is Easter Sunday - the day we celebrate Christ's resurrection and look forward to the day when all who love Him will also be raised and living with Him for eternity. I've only got one thing to say:

Bring it on!!!

Friday, April 10, 2009

Results are in...

I got Little A's blood results yesterday afternoon - everything is STABLE (got to love that word).

Creatinine: 195
Urea: 8.3
Sodium: 144
Haemoglobin: 169

The blood draws are getting harder and harder. As soon as I put her on the bed she knows something bad is coming and just SCREAMS hysterically. I HATE having to hold her down for procedures - it is traumatic for both of us. I have lost count of the number of times I have had to hold her down for a procedure. She is inconsolable during them and fights like a little wild cat - often I need a second person to help hold her down as she is so strong now. Yesterday in the middle of her screaming, she yelled out "Bye-Bye" which nearly broke my heart. For a child with delays like Little A's that was such an achievement in communication - she was trying to tell us using her voice that she wanted it to be over. I'm not usually a crier, but even I felt like crying at that point.

At least it is over for now, and because the results are stable we won't have to have it done for another 3 months. We see the kidney specialist on Tuesday for a review, but hopefully it will just be routine seeing as the blood results are good.

Thursday, April 9, 2009

I am obsessed with numbers

Anyone who has had a child in the NICU or PICU will tell you that eventually you become obsessed with numbers. In particular oxygen saturation, breathing and heart rate. Even though the NICU was 3 years ago my obsession with numbers has continued, only now it focuses on Little A's kidney numbers - creatinine, urea, sodium, haemoglobin etc.

It is time for Little A's blood test to check her kidney function. This is the longest we have gone (3 months) without having bloods in ages so I am getting anxious about the results. Will her creatinine have gone up again? Will it be stable? Will a miracle have occurred and it has gone down? These thoughts start going through my head a couple of weeks before blood test day - and now that the day is here I am impatient to get the results. Hopefully they will be back by this afternoon so I don't have to wait over the Easter long weekend to find out.

For those who are new to kidney worries, some of her previous results have been:
Dec 2007: creatinine 115
Jul 2008: creatinine 159
Jan 2009: creatinine 194

Can you see why I am worried it might have gone up again? I am hoping it will stabilise at this new level of around 200 - I am still hoping she will get to at least age 5 before needing her transplant. The numbers will tell.

Monday, April 6, 2009

First Haircuts

The twins had their first hair cuts today. We learnt the hard way when trying to cut E's hair that it is better not to try and do these things yourself - it usually just results in a trip to the hairdresser to get the job fixed up.

Of course I forgot my camera AND my phone so I have no photos of the actual hair cuts taking place, but here is everyone post haircut.

E had nearly 10cm chopped off (she needed a haircut after I had to chop a large knot out of her hair last week)...

A2 (who from now on will be known as Big A) had the least cut off..

A1 (who from now on will be known as Little A) had her unruly mop tidied up...

Saturday, April 4, 2009

The things kids say...

A2 is at that delightful stage where she says the most hilarious things without realising it. Tonight's statement was (with a sound of panic in her voice):

"We need more credit cards for our birthdays!!"

Other ones from her have included:

"I had a nice Christmas thanks - you didn't ask"

"I got little toes. And when I'm big I'll have big toes. And a big mouth."

Aside from the tantrums this is such a fun age. Tonight she was wriggling while sitting on my lap and I asked her if she had ants in her pants. A few moments later she answered (with her pants now around her ankles) "Nope, no ants in my pants!"

Thursday, April 2, 2009

Our new family members

As you know it was E's birthday this week. One of her presents was a small fish tank - so this afternoon we went and got some fishies.

Here are the pics...

Seeing as we spent the afternoon buying fish I didn't have the time to cook dinner, so we are and chips. Is that bad???