Catch-up on events from NYE...

The following is a 'Rachel's update' with my own tacked on the end..

Rachel took Charlotte to amateur play in Ellenbrook, put on by the Ellenbrook Theatre Company. It was a pantomime of Sleeping Beauty. They were invited by our friends, Kylie and Olivia and Kate and Bridgitte came along too. It was a fantastic play and a lot of fun. All of the girls were very scared of the witch, so he must have done a very good job. He made me jump a few times as well!

Charlotte hasn't been eating much at all while not being able to do a poo.  The hospital advised us to use a drink called Parachoc and Charlotte hated the taste of it. Then on Monday morning she tried to drink it after breakfast and up came everything she had eaten, all over her feet and the tiles. The parachoc didn't make it smell any better either. I called the hospital and asked what else we can do, because there is no way I'm giving her that stuff anymore. The nurse gave me the name of another drink called Lactulose, which we bought on the way to the Happy Zoo Year.

It was soooo hot Monday and everyone in line at the zoo was getting very sweaty. It was a great concert and they had Bizircus up first, which was funny and then a local band, called Arrival.  Then the main act was a lady that was impersonating Kylie Minogue. I've forgotten her name, but she was on X Factor I think they said or one of those sorts of shows. She was very good anyway and you could nearly imagine yourself being at a Kylie show with the impressive costumes and high energy dancing. Charlotte loved it all and taped some of it on her ipod and took lots of photos on her ipod too. She knows exactly what she is doing with that thing. I didn't even know it took videos until I saw her taping it part way through. We had a lot of fun bopping away and then got home just before 11pm. Charlotte was asleep halfway home though! Had a good sleep in too, thank goodness.

Tuesday morning (New Years Day) she had another drink of her Lactulose and some breakfast and then we went off to Grandma and Grandpa's for a leisurely swim and lunch. It took her a long time to eat the few nibbles she called her lunch, as she was constantly going off to the toilet. Lots of air, but not much else, unfortunately. I could see we were gettting close, though. We dropped in to see Jamie's mum and then home again and Charlotte had another drink of Lactulose before dinner. Finally part way through dinner we had success. Who would have thought you could get so excited by going to the toilet? And then another toilet stop after dinner with a bit more relief. So the Lactulose was working!

Wednesday was Charlotte's regular PMH appointment again at 9am. Off to the blood test first and she was very brave again. No flinching, just held her thumb out and watched as the blood flowed out. It is flowing a lot better now the steroids are completely out of her system. Then off to see the doctor for the results and observations (checking). She had maintained her weight from last week and blood pressure, etc all good again. I think we finally saw the doctor about 11am, because my stomach was starting to rumble ready for lunch. We explained about Charlotte having trouble with her eating and eliminating and we were advised to keep giving her the lactulose on a lower dose to keep things happening.  

He checked her reflexes and facial muscles, etc and then checked her heart. He seemed to take a lot longer than normal I thought and then he turned to us and said there is something strange and he will just get the other doctor in here to use a different stethoscope. So in came Dr Jordan and he used his stethoscope and they both looked at each other funny and Dr Jordan said "that is different. Haven't heard that before". After we questioned what they were hearing, apparently Charlotte had a funny squeak on the second beat of her heart. A squeak? I could see Charlotte was getting worried, so I asked her if she had swallowed a mouse or maybe one of the dog's toys. She thought that was very silly, but she didn't look so worried then.  Dr Tom was going to organise for the cardiologist to do an ultrasound. He wasn't worried, as Charlotte looked so well and you could see she was ok, but he was more curious as to what this funny noise was. 

So back out to the waiting room we went. Finally the cardiologist came down to see Charlotte and he listened to her heart and then gave the stethoscope to his colleague, who looked at him with a funny look on her face, as if to say, what is that? The cardiologist explained that Charlotte has a dyastolic squeak, which is very rare and he has only come across twice before with children. It seems to come and go and doesn't cause any harm. They are not sure what causes it and why these kids have it, but they only have it every now and then. Its not exactly a murmur, because it makes a squeaky noise. When a heart beats it goes lub dub and it is on the second 'dub' (the dystolic one) that it makes the squeak. So they don't need to do anything to correct it and it doesn't do anything to the child. Very weird, but we are getting used to these very weird things now. Charlotte seems to be one of those kids that doctors say only one child in a million will get this thing and yep, she has it.

Anyway, we finally left hospital just before 3pm and Kevin and his mum waited for the Vorinostat to be made up.  I dropped her at Kevin's and then raced over to Jamie's house, as he was taking me to the Hopman Cup. I got to the tennis just under an hour after it started, so I didn't miss too much. It was a very exciting few games, but I was ready for sleep by 9.30pm and couldn't stop yawning.

[Kev now] Picking up from there, the rest of the week and weekend was good for charlotte.  She has been running, skipping, singing in the shower and feeling good.  Having said that, she still didn't eat much and wasn't going to the toilet.  I had to ring the hospital twice as Charlotte vomited a couple of times too.  On Sunday I rang the hospital again to explain that the laxative seemed to have no effect.  So we increased it again, and thankfully by the afternoon she sat on the toilet to do more poos.  Hopefully it has worked overnight too, as she may have had to go into hospital today (monday) to take some meds that will force her bowels to move!

Well, I was kept really busy over the last 4 days with her friends who came up to play on various days.  We also got to watch the speedway on Saturday night where her little cousin Trevar rides in the Peewees :).  She really enjoyed the night despite the loud bikes.  Sidecars were her favourite.