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.