Friday, January 28

A sneak peak into yesterday

Some days the emotions of everything just take over, so let me run through a sneak peak of yesterday and let you know how it all went....
Woke up after a terrible night sleep (grumpy), L was running late for work so couldn't help me with Holly (angry), Holly wouldn't sit properly for her feed (frustration). She had a few seizures (worry), had a sleep (bored), woke up and gave mummy some lovely smiles (joy). I tried to give her some lunch (more frustration), we got ready and left for a friends house (excitement), had to go to the post office on the way. Got a letter from very special kids - we've been accepted! (happy, relieved, excited, nervous about leaving her for the first time). Got to my friends house to see her new baby (happy), left there to get Holly's new AFO's - for those that might not know AFO's are foot orthotics - we were running late (anxiety), got there and got the fitted (resounded sadness - just another piece of equipment that makes her look disabled - just one more thing that we have to deal with). Went to my sister's to pick up her mail (excited and looking forward to seeing them on Tuesday). Got home, Holly had a sleep, I got on the computer to hear people complaining about their lives (annoyed, frustrated, angry all over again). L came home and left again for training, I gave Holly her dinner, bath and bed (lonely). L came home, we had a late dinner and went to bed (tired). Holly woke up at 3am having a seizure (scared, worried, anxious), got her back to sleep at 5:20am (tired).
Some days I think I'm more tired because I've had so many emotions that doing anything physical, its very very draining some days.
Bear with me here while I vent a little then I'll come back to so happy things. I get really angry when people complain about their lives. Some days I think 'we are the people who make your life look good so don't complain to me'. I am living most people's worse nightmare, don't complain about your life. People complain about not being able to get pregnant - I know how hard it is, we waited for Holly - and be careful what you wish for people, just cause you want a baby, do you want one with a disability? Have you thought about ALL the possibilities here people???? People complain about how hard it is being pregnant. Are you serious?? Your life hasn't begun yet - just you wait!! You don't know what hard is. Be grateful that you are pregnant and keep your fingers crossed that it all works out OK. People complaining about their children. OMG, this just annoys the crap out of me. Be grateful that your child CAN throw a tantrum, be grateful that your child can walk, talk, hear, eat, show emotions and be passionate about what they are trying to achieve. Be grateful that you have a child in the first place. I know I'm not walking in their shoes and I shouldn't judge them. I know to them their lives are tough, but seriously - come and walk in my shoes - see just how hard it can be and stop complaining about yours.
OK, back to something good - Holly got accepted into very special kids! We are super excited. I was really surprised that we've been offered full services. I know they are in high demand, so I thought we'd get offered limited services until we could get in to the hospice, but we've been offered all their services. Its ACE! We will be getting three weeks of respite per financial year. You can only take them in a maximum of one week blocks, and there are a few regulations about public holidays and Christmas holidays, but we are just so excited and grateful to have been accepted. We should be getting a phone call from them next week so we can go down and have a look around and meet the staff. Very very cool!

Thursday, January 27

Her new seat thing

When we were at CPEC the other day, we came home with another piece of equipment to help Holly learn to use her head more and to sit up straight. The idea is to strap her arms and legs straight, hold her body in position and allow her to use her arms to push her head back. We've tried a few things in the past to get her to practice head control, but nothing we've used have worked this well so quickly - its amazing to see. She screamed when we put her in it the other day at CPEC, and she didn't like it at first yesterday, but eventually she settled in to it and didn't seem to mind it. I know it looks awful cause its just another big piece of equipment, but it makes me feel really proud that she's doing so well using it. I sort of think - oh well, doesn't matter what it looks like as long as it does the job right? It just makes me believe so much more that we are going to get great benefits from CPEC.

Wednesday, January 26


About three years ago I decided that I wanted to learn to play golf. I'm of the thinking that when my friends decide that they want to play, I will have already been playing for a while and I'll be good at it! It usually takes me a long time to learn a new sporting skill, so I thought I'd get in early!
About two years ago L bought me some awesome pink golf clubs, when he bought them for me we went down to the driving range and hit some balls, then I had my first round of golf when L and I were away on holiday. The day after we got back from the holiday I found out I was pregnant so I haven't been near the clubs since - until today!
L and I went back down to the driving range. It was really fun, we got a bucket of balls had just had a hack - the bucket always seems to run out too quickly - I think its cause L hits more of them than me, but I always want to keep going once the balls run out. I'm not too bad at hitting the ball even if i do say so myself. I'm reasonably straight, but it just doesn't go all that far. Anyway, the range we went to was really quiet, which we were surprised at considering it is Australia Day - we thought that being a public holiday it would be really busy. When we got there, there was only one other man there. And when he left, the golf pro that was running the place came down and taught me some things. It was really good of him. So, I signed myself up for some lessons! I'm really excited about it. Then, I was telling my dad about it, and how much fun I had, and he said he'd come and get lessons with me! How cool will that be! I'll go and have a hit of golf with my dad! We've never done anything like that before - I'm super excited about it all now! I'm going to have to ring them tomorrow and put dad's name down too.
A good day! :)

Tuesday, January 25

CPEC initial assessment

We went along today for our initial assessment - I'm sooo relieved that it all went so well. I was a bit worried that I'd put so much emphasis on it, and I had so many questions that not all my questions would be answered and I'd come away frustrated. But, we have a fantastic team of therapists. I went through every little detail with them. All the little things that have been in my head for so long. All the things that I want help with and needed doing and all the things that had been playing on my mind. I know its not like I can totally stop thinking about these things, but they are off my mind - if that makes sense!? I don't have to think about them as much, there are other people in the world who now know about her problems and are working on helping us. It feels like a big relief. I know I'm still the one who is her primary, I'm still the one that does the therapy with her and looks after her the most, but it feels better knowing other people are on to it. She has her own priority list, things like a pusher, feeding, seating, bathing, funding for everything (where we can get it), and we have it all on a regular weekly basis - not all over the place. The lady we currently have is supposed to come every second week, but she is known for ringing up in the morning and cancelling - she's terrible at keeping up, she'll come with the wrong bits of equipment, or the right bits, but the wrong parts to adjust the equipment - very very frustrating. All that will be behind us! It will be nice to get some sort of routine going - every Tuesday is CPEC day.
I spoke to my sister again this morning, she's still on cloud nine, just very very jet lagged. She told me that he proposed to her on the bridge where Big finds Carrie at the end of the Sex in the City movie - god, how romantic! I can't wait to see her. She gets back on Monday night, mum wants to go to the airport to meet them, I'm not sure if I'll go or not, I'll have to see how Holly's seizures are on the day I guess.
Gotta get her dinner organised...

Monday, January 24

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..

Sunday, January 23

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!

Friday, January 21

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.

Thursday, January 20


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

Wednesday, January 19

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!