Very Special Kids

I'm a bit excited today. Not only are we having our initial interview with CPEC tomorrow, I got a phone call from VSK today. The lady said it was a review phone call to see where we are at. She said that her boss asked her to make the call so we must have been put up in the line - how exciting. Keeping my fingers and toes crossed for that one!
For those that don't know, Very Special Kids is a fantastic organisation who do respite for high needs kids and palliative care. They also do support networking with parents and siblings and things like that. Gee I hope we get in. Its the best. Please keep your fingers crossed too - we should find out in the next week or so.
Will post more tomorrow when we've been to CPEC..

The stuff of fairy tales!

Oh my goodness have I got a storey to tell!
I was sitting here at home yesterday afternoon and I was getting a whole heap of phone calls from an unknown number, no idea who it was. I also had a friends partner ring me heaps. I got a bit worried cause this friends partner never ever rings me. I thought they might have been in an accident or something. I was trying to ring his phone back and I kept trying hers, but no luck. Eventually I answered one of the unknown numbers and I heard her voice. It sounded really faint, I couldn't really hear her voice. So I asked her what was wrong and where are you? Her answer - "In Paris". I was like WHAT? Where are you? She said, I'm in Paris. I was in total shock and disbelief, I only spoke to her on Wednesday and she didn't say anything about going overseas. The next thing that came out of her mouth was "We are engaged", I was like WHAT?!! I couldn't believe it! She was in Paris and engaged - how does that happen? Apparently her partner organised everything and surprised her. He rang her boss and organised for her to have time off work, he'd booked the flights and everything. She emailed me later to say that he just told her on Thursday morning that they were going away for a week and that she needed to pack for cold weather. She didn't find out it was Paris until she got to the airport and she couldn't ring anyone to tell them she was going away!
Seriously - its the stuff of fairy tales! Who gets flown to Paris to get proposed to??!!
I'm very very excited for them and can't wait till they get back so I can see them and check out the ring!!


I'm editing this three days later cause I can now reveal who the 'friend' is - its my sister!!! My sister got flown to Paris, I can't believe it still! She just rang me again, very excited and very tired from jet lag. He proposed to her on the bridge that Big found Carrie on at the end of the sex in the city movie - Oh my god can you find a more romantic thing????? What a keeper he is!

Ever wanted something so bad you could burst?

I just want it sooooo bad, it hurts, its frustrating, its annoying. I know I want it, I know it will make our lives so much better, but we just can't get it - we can't afford it. I've cried and cried over it, why can't we just get it. I just can't justify spending the money - we have to save all our money cause we don't know what expenses Holly is going to need. How can we justify spending money when we know we need to save all the money we can for Holly's needs. I don't mind being broke, I've been to uni and lived the life on eggs on toast. I know we can live like that - if we didn't have Holly and her needs. Its just so heart wrenchingly dissapointing.
Vent over.

Vent

I HATE AF. Why it happens I will never know, especially when I dont want it.
M girls will know what I mean.

Smiles and giggles and all things nice....

Christmas is over and done with, its the new year. I haven't posted in ages cause L has had some time off work so we've been busy catching up with friends and going on day trips to the beach and things. It was a nice relaxing break.
Holly has been having these different types of seizures since Christmas. They aren't quite tonic-clonic but they also aren't her usual myoclonic. Its like a combination of the two. They are lots of myoclonics in a row. she will do up to about 50 jolts in a row, she purses her lips and her skin goes all blotchy while she is doing them. I emailed her neurologist about them the other day cause I videoed her while she was having them. He has increased her medication and told us that if it doesn't settle we can increase her meds again in two weeks. We see him in feb anyway, so its not all that long to wait thankfully.
We have been getting the most beautiful smiles, and best of all - giggles! They are gorgeous. She really is a very pretty little girl! She has been really happy and contented lately and its been heaps better. I've also started to put her into a really strict routine. She was absolutely ruling the roost here a while ago and not going to sleep until 9:30at night - that is waaayyy too late for a one year old, so I decided that she is going to be put into a routine more suitable for a one year old! She is having breakfast at set times, and having a nap at set times and doing things 'normal' kids do. Its taking a lot of patience, but she is getting there. I'm finding it better too cause I actually get more time for me during the day. Instead of her having 4 twenty minute naps, she is having decent 1 hour naps. She is a lot happier in herself cause she isn't tired and grumpy.
We've got our initial assessment at CPEC next week. I'm a bit nervous about it all, but I'm sure it will be OK. I guess I'm just nervous that we are going to find out about more things she can't do or won't be able to do. A friend of mine said to me once that even though its great we are at these great centres, we do need to be prepared that we are still going to be the worst. There will still be kids who are more capable than Holly and it will still hurt that she can't do a lot of the things that the others will do. I guess that's something we are just going to have to get used to!

Happy First Birthday my beautiful girl

I can't belive we got her here!
Its been such an amazing, joyous, heart breaking, scarey year. I just don't know how many adjectives I can use! Unbelieveable.
L was really emotional all day, we both were really. It was a busy day, we had to vote and pick up baloons and cake and a few bits a pieces. I wasn't ready by the time people started arriving, but that's become normal now!
We had a great afternoon. Heaps of people here, its really nice to know we are so well supported. I can't remember what I said in my speech, but L made a lovely speech and made everyone cry!
The last people left after midnight, but that's OK they are close family friends. We were just sitting out on the deck having a few wines. I really didn't feel the wine, I think cause I'd been sipping all day rather than drinking - I was too busy trying to get to everyone.
Holly was quite unsettled throughout the day. I really think that it was all the noise and everyone getting up in her face. She just got grumpy and she did a big spew all over the gorgeous skirt that my bestie S made. I felt bad cause she didn't even see Holly in it! We gave her some panadol to try to settle her a bit, she had a sleep and woke up at about midnight - but she decided that she would be wide awake and in a really good mood! She didn't go to sleep until after 3. So even though everyone had left, Holly and I were just sitting up in the lounge.
L and I did very little on Sunday. Our parents called in to help clean up, but I'd already done it.

A catch up...

Since her seizure its been quite eventfull around here.
That was on a Tuesday night.... that week was pretty busy with appointments, then L had soccer on Friday night and I was bathing Holly when she fell out of her bath chair. She arches a lot and she just arched and fell into the water. I took her over to the hospital just to check that she hadn't aspirated any water. They did some x rays and found she was all clear so we got to go home after about 5 hours. Then she was great over that weekend. We were just running around finishing off some house renovations. Until Monday morning. She started breathing really funny - almost like an asthma attack and she was running a high temperature. I put her in the car and took her back to the hospital - third time in a week! So the triage nurse didn't make us wait, we went straight in. She was really distressed and crying and not nice at all. So they did more x-rays of her chest to see if there was an infection - that came back clear, they did x-rays of her abdomen in case there was an obstruction - that came back clear, they did three UTI tests - two came back positive and one negative. Mind you, that last one was after she'd been on an IV drip for about 4 hours. She was only OK when she'd had panadol, so they just kept dosing her up on panadol. They couldn't find anything wtong with her though. They kept her in overnight just to make sure she was OK overnight. By morning she had drunk all her breakfast and lunch so they let us go home. It was a mystery illness. I have no idea why she was sick - neither do the doctors!
So that was Monday and Tuesday pretty much taken care of. Then Wednesday and Thursday was full of getting ready for Holly's party. Friday L took off work so he could help get the house ready. We did things like pick up the tables and chairs from my dad's and set up decorations etc. Saturday was her birthday. She made it to one!