Wednesday, September 7

Since June? Really?

Hard to think its been THAT long!
So much has happened!
She is doing AWESOME!
We've been in and out of hospital a few times, she's had a PEG put in & her hips operated on.
The PEG is fantastic!
I've started her on a "blenderised food" diet - where I blitz everything in our new thermomix. I'm loving it & she's been in really good moods & is doing 'normal' poos!

As a general rule, we are ace! I'm coping with everything so much better, I'm really comfortable with the way things are & she is healthy & happy - can't ask for much more than that!

Wednesday, June 1

New website

I just had to put this out there - I'm not ready to make it really well known yet - hence not on my facebook yet, but I've done us up a website to help us raise money for the new car I'm dreaming of.

You can't google it yet, but if you type  into address the bar it comes up!
I'm a bit excited about it all!

Wednesday, April 27

A car?!

I went and had a look at my dream car today.
Its awesome, the Kia Grand Carnival at Automobility. It has a fantastic (light weight) ramp at the back where we'd wheel Holly in, she sits in the middle of the second row of seats. This car has got a third row that you pull down as required - for when/if we ever have more kids. Its just exactly what we need. 
Ahh to dream!
The reality is that its going to cost about $70,000. I have no idea how we are ever going to get that much money. Time to start thinking seriously about fundraising.

Tuesday, April 26

Some weeks are really tough...

Sometimes you just fall in a hole and its hard to get out of. This is one of those weeks. Everything is a drain. Feeding, getting meds organised, crying, seizures, more crying, more seizures, more meds. It feels like you just go around and around and around. There really isn't any light. She is at an age where she should be walking, I should be teaching her to talk, to feed herself and explore new things. She should be able to run around in the back yard with the dog, play with the other kids and do all the things that "normal" kids do. Sometimes being in this never ending cycle of feeding, crying, change a nappy and seizures is shit. I have this overwhelming sense of guilt. I should be putting her in her chair more often, I should be putting her arm and leg braces on more often, I should put her in her corner chair more often, I should feed her orally more often so she doesn't lose the ability to do so, I should give her more time. But seriously, I am emotionally drained right now. There is only so many hours in the day that one person can 'goo' and 'ga' at a baby so that she smiles. Don't get me wrong, I love her smiles and I do appreciate that she does smile, but there is only so much time in a day that one person can spend getting the child to smile.
I think that's one of the hard reality differences. 'Normal' people spend a few months 'gooing' and 'gaing' to their child, their child learns to smile, learns to interact with people, then they move on, they have new things that amuse them, new things to learn and by the age of about 6-12 months they are out exploring new and different things. Nothing changes with Holly. Day in day out, its the same. Its just ridiculous monotony.
It sounds like I'm really unappreciative of what I have. I try each day to be grateful that I have her at all. Some days, and some weeks its just really really tough.

Sunday, April 17

Lazy sunday afternoon

Its a very lazy day today. I had a sleep in, got up and had a hot cross bun for breaky. We got dressed, dropped Holly off at my dad's and went out to the valley. We had a poke around the farmers market at Yering station, then went to the dairy for a yummy cheese platter, then picked up some strawberries before heading back to pick Holly up. L and Holly are now asleep on the couch.
We've not had a very eventfull few weeks since the last post really - just plodding along.
We got rid of Holly's green wheel chair that we've had for about 6 months. It was good while we had it, but we don't need it any more and she can't sit in it for the moment while she has her saw hip so its good that its gone from the house. I'm really pleased that the physio came and picked it up - I'm equally pleased that we don't ever have to see that particular physio again! I'd forgotted how much she annoyed me until she was in the house again. I'm very pleased we don't have to deal with her.
No other dramas really!

Saturday, April 2

Sometimes its the little things...

I knew it had been a while, but I didn't realise its been a month.
Holly's obviously out of hospital by now! She was in for a total of 10 days. She got out, was out for a week, then I've been in. I was in for an overnight stay, then came home for two nights and went back in for another three nights. All's good now, but not the point of my post.

We were just watching a movie and mid way through the two of us were bawling our eyes out. It was a really good movie. Its just really hard watching when the baby on the movie learns to say "mumma". Holly will never say it. Sometimes its the little things that are the hardest.

Wednesday, March 2

Week one of hospital....

We've been in a full week tonight. Far out its been really shit. Not just cause she's been quite sick, but I've had to battle with stupid bloody nurses the whole bloody time. Let me just go through some of the issues, describing them as nurse 1, nurse 2 and nurse 3 to be polite - I can come up with some other names which are far more appropriate, but I'm not sure that they are Hitler followers or female dogs which have not been neutered.
Day 1 - nurse 1 - *told my mother in law off for sitting on an unmade bed cause she might dirty it (great introduction) *told my mum (who was acting as Holly's primary carer at the time) that she could not use the toilet next to Holly's room and that she needed to go down the hall to the visitors toilet. *Told us that she was going to get the scales for Holly and that we'd have to sit her up in them - totally insensitive, didn't even ask if Holly was capable of sitting.
Day 2 - nurse 1 - decided totally autonomously that she wouldn't feed Holly the second half of her lunch, she'd just give her an early dinner instead. I think this is the one I'm most angry about. How dare she decide what Holly will or won't eat. She is in hospital for a UTI, to increase her fluids and gain weight. It is NOT her decision to make that Holly doesn't need to be fed. Then when I questioned, I was told that the dietitian had told her it was OK - I went nuts, asked for them to ring the dietitian cause I know that is not the case. Between 8:30am and 6pm Holly was given 130mls of milk. Holly's regime at the moment is to have 130, half hour break, then another 130mls. So she had her 6pm 130, so her second should have been around 7pm in theory. They didn't come back in to Holly until 8:30 with the second half of her meal. So then it also became that between 12:30 and 8:30 she'd only had 130mls. Complete incompetence.
- nurse 2 - Holly's feed has to be thickened, I'd had a discussion with one of the doctors earlier on about how much thickener is to go in the bottle. It was decided that one scoop of thickener was to go into each 130mls of milk. nurse 2 came in at 8:30 at night shaking up the bottle saying that she'd put 1/4 tsp of thickener in the milk. To cut a very very long storey short, I had a stand up argument with her about how much thickener was to be in the bottle and it did not matter how many time I tried to explain to her that I had spoken to the doctor and that is what the doctor said, she just was not going to back down. In the end, I ended up so upset about her not getting any food at all that I just cracked it, told her to put it down the tube and ring the doctors. Turns out I was right - funny that isn't it???!!!
Day 3 - nurse 3 - arguing with me about whether or not Holly needed her dummy. To quote her "Get that animal thing out of here". I really don't need your personal views imposed on me. She spoke about whether Holly needed one, and if she did then perhaps we shouldn't get that shaped on. Holly's speech path recommends that Holly has a dummy, in fact she recommends that brand and that shape. I'm so sick of people trying to project their personal opinion and what suits and able bodied person on Holly.
Hadn't had too much trouble since then...
We are now at day 7 - nurse one - She is such a bovine - Anyway, I think she genuinely has been trying to make conversation today. But it just hasn't suited her, she's been trying to be nice and it just hasn't worked all day. So in Holly's room there are two beds and two trundle beds/chair things that are provided for parents to stay the night. Because Holly has now been classified as a gastro patient, we've got the room to ourselves. nurse 1 came in to me this afternoon and said that she'd like to take the trundle beds/chair things out because we've got a bed for the overnight carer to stay and we don't need the trundles. I said to her that I'd prefer if we could keep one if possible because we need a chair for us to be able to hold Holly in. She said there were some other arm chair she might be able to bring in instead. I said, well I'd prefer to keep the one that's there if possible because its the best at supporting Holly. So a few hours later, all the other bedrooms are vacant, Holly was litterally the only person admitted on the ward. Clearly that meant nurse 1 had some time on her hands and she thought she'd move some beds around. She came in with this armchair that was a glorified dining chair. I explained to her that the chair wasn't going to be suitable for us to be able to support Holly and she went at it from there. Saying bull's feaces about how we've got two in the room and we don't need two - I said, I know we don't need two, I'm not asking for both to be kept, I'm asking that we keep one because its most suitable for us to be able to nurse Holly. Then she said, I'm just trying to save someone having to come in at 2am to come and collect it if they need it. Well why not let us use it until 2am cause Holly might need it in the mean time??? There are 3 other bedrooms available, all with trundle beds in them surely if someone else comes into the ward, they'd put them in a room with a trundle bed in it??? The likelyhood of them actually needing the trundle bed we are using is slim to none. Far out I'm frustrated. Its been such a crap week and I really didn't need this tonight. I'm pretty sure that this is the straw that has broken the proverbial back. I'm over it. I'm going to ring the patient relation person in the morning and see about making a complaint.....

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.

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!