Thursday, February 17

Is this the end of seizures??

Gosh I hope so.
We went to the neuro last week, showed him some video of Holly's seizures and he gave us a new medication. We started it on Monday night. She'd been having 3 or 4 a day, up to about 5 or 6 minutes long. Come Tuesday, not one! She didn't have a seizure at all on Tuesday, she had plenty of her normal little jolts, but no big ones. In fact, she hasn't had a seizure since! We are very happy! She's been a little sleepy and she's struggling to drink from her bottle, but we are perservering. I'm hoping she'll get used to the drugs and come back to her usual chirpy self, and I'm really hoping she'll take her bottle again quickly. I'm keeping a very close eye on how much she is actually drinking.
Tuesday we went to our orientation meeting with CPEC. The other parents were there, two bought their kids, one other lady and us didn't. They seemed nice enough, hopefully they are nice people, we are going to be spending a bit of time with them I imagine. I hate to judge books by their covers and I'm trying to keep an open mind that these people WILL be lovely!! Time will tell. After meeting all the other parents, the physio had arranged for the wheel chair company to come out and measure up a chair for her. They came with a prototype and we sat her up in it - she absolutely cracked it - but it fitted her well. All the other therapists were there at the same time and they were all commenting on how good she looked in it, as in, how well it fitted her and she could sit up properly etc. It just happens to be the most expensive one - I have no idea where we are going to get the money from, but if its what she has to have, then its what she has to have I guess. The only saving grace for it is that its designed that it will do her for about 5 years, so at least we won't be forking out for wheelchairs every one or two years. They are going to try to get the chair part to be detachable from the base so we can have her in it inside and outside. Fingers crossed it all worked out.
Wednesday I went back to my eye doctor, bit of a bugger that my left eye has now got all the problems that my right eye has. So everything we've been doing on my right eye for the last 8 years we are just about to embark on for my left eye.
Today was good, we went to very special kids and had a look around the hospice. Its really cool, there are 8 bedrooms but they only take 6 kids at any one satge. There is a really big main living room with things for the kids to play with, there is a sensory room and a music therapy room - its all just really positive. We had a quick look around the parents house too - a great fascility if we ever need it - unlikely, but if we did its there. They have a nurse on 24/7 as well as carers and they have specific doctors on call if there is anything that the nurse can't take care of. Its just really reassuring to know that she'll be taken care of.
Its been a pretty full on week so far, we've been busy all week and we've been staying at my dad's cause our floor boards are getting sanded and polished. Its always nice to come home when you've been at someone elses house, no matter how nice their place is. I'm looking forward to a big long sleep in my bed!

Mark Schultz - What It Means To Be Loved.wmv

Saturday, February 12

Free to good home - one husband....

FREE TO GOOD HOME: One husband....
not bad to look at, loves chocolate and is apparently a pretty good soccer referee.
Warning to new owner - you must be willing to feed him, buy his clothes for him, clean up after him and manage his money. He won't be home much though so you'll have the privilege of doing these things without him actually being there.
I'm happy for you to pick him up or I'll deliver him to you....

no really I do love him!

Thursday, February 10

The good days are really really good!

Today was unreal - I've never seen her this happy and content. She was laying on my bed this morning, not really doing anything, just laying there, and she just kept smiling and smiling to herself. I wasn't even talking to her or tickling her or anything, she was just coming out with these amazing smiles! It was so adorable. And to be honest, I really really needed it. I've had a pretty crap week. L was out at soccer pretty much all weekend, we were really busy with other things going on as well. Holly's seizures have been getting progressively worse in both intensity and duration (more later about that). I feel kind of restricted about leaving her cause they are so bad, which puts more pressure on myself. Monday was probably my low day though, she was crying cause of her seizures and I was crying cause she was crying - everything was just annoying me, I was just in a bad, grumpy, sad mood.
Yesterday we went to the neuro. He said she's not having myoclonic clusters, but the tonic part of the tonic/clonic seizures. He said its a bit more common in older kids - personally I think he was trying to be polite cause when you google it, it seems to be in kids with more severe forms of epilepsy. It just added to my week long bad mood! Thank God we had a good day today - I really needed it. I managed to get out of the house and go and visit a couple of friends. It was lovely to talk to humans.

Wednesday, February 2

Another busy week...

Friday - hot, busy, went for a swim at Dad's and had a BBQ dinner.
Saturday - warm, had two friend's birthdays, great night, had a few drinks and a bit of a relax.
Sunday - very hot. Had a BBQ with friends planned, but it got cancelled cause of the extreme heat. I'm hoping it gets re-scheduled soon, I was looking forward to meeting some more people and catching up with others. Luke had a game that night, I went to Dad's for another swim.
Monday - nothing sort of a day. Stayed home cause it was too hot to go out. Mum and I went to the airport to surprise my sister and her fiance. It was good to see her, I've missed just chatting to her - and she's only been gone 10 days! I'll look forward to spending more time with her on the weekend.
Tuesday - CPEC day. We went there for a video session in the morning, just so we have a record of how she is at the start of the year, they'll do another one at the end of the year I think. Then Holly's physios from CPEC came here to look at the equipment we have and see what we needed and what needs adjusting etc.
Today - went to podiatrist, was supposed to go and see a good friend of mine before she takes off overseas, but Holly was having long nasty seizures and I didn't want to put her in the car. I can't do anything if we are in the car, at least if we are at home I can hold her hand and comfort her. Although I do feel better for having stayed at home, I'm feeling very housebound. The more and more I think about it, I need an extended break from her. Today she's done two monster poos and one monster vomit, she's been a nightmare to feed and a real cranky bum in general. My patience is starting to wear thin. I'm hoping she's just got a toothy peg coming through and its nothing more sinister.
Oh, I also ran into my first boyfriend at the post office on Monday. Needless to say, I'm very grateful that I've got L in my life!! Its funny cause a friend of mine and I have had conversations about our ex's and how we'd like to catch up and have coffee with them or something, just to see where they are at and how they are going. I do chat with this guy once in a blue moon on facebook, just to say g'day. I know this sounds awful, but I couldn't get away from him quick enough when I saw him - sorry if your reading this.... doubt you'd read it... too many big words!!! I'm a nasty horrible bitch! Just looking at him made me think 'I'm grateful that I'm not with you any more', and then when he went on to tell me that he hadn't really done anything with himself since the last time we spoke - or even when we were together 17 years ago! Looks the same (still too skinny, but with a few grey hairs), acts the same, doing the same things, seeing the same people, I can only assume doing the same illegal activities - although I hope not. The soft spot in my heart for him will probably always want the best for him, but the other side of me goes, 'well, you have to do it yourself, get yourself out of the whole you are in, no one is going to do it for you.. it has been a bloody long time, grow up and get your shit together'. I know its coming across as harsh, and again I'm sorry if your reading this, but at least now you know how I feel and you might know why I won't ring you.
I'm going to go and keep watch on the tv for what is happening in QLD. Cyclone Yasi is about to hit the coast tonight - right around Cardwell and Innisfail where I used to live and work. I'm sure that where I worked will be gone tomorrow, its very scary thinking of the damage that its going to cause. I don't think its going to be a matter of if people die, more how many die. Very morbid to say so, but seeing people get turned away from evacuation centres broke my heart this afternoon. Pray that everyone is safe.