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 www.hollyswheels.com into address the bar it comes up!
I'm a bit excited about it all!
Wednesday, June 1
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!
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.
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.....
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!
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!
Subscribe to:
Posts (Atom)