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!

Another seizure :(

Holly had another seizure last night - this was a big one. It went for a few minutes and she turned blue for a bit. I rang the ambulance and they cam just after she'd stopped fitting. It was shit, horrible, aweful seeing her - you just feel so helpless. Even if she is fitting, there isn't anything that anyone can do - even at the hospital. Its just crap.
We got to the hospital pretty quick, she was just lethargic in the ambulance, but by the time we waited for the doctors to come around and check her out, she was totally fine. She was her usual happy self, just wanting dinner!
Very scarey.
I think that after having her so well for such a long time, we've kind of become a little compacent that she is going to be fine. It really put the wind up us both. I think anxiety is a little high because we are approaching her birthdya too - she wasn't even supposed to live this long, so its a bit worrying. I'm sure she'll be fine, its just a bit of a fright thats all.

far out its been ages!

I can't believe its been since September that I posted last. Crazy.
Well, since September, we've just been settling in to our new house really.
Started with our new physio from Specialist Children Services - not overly happy with them, but it just adds to the excitement of CPEC. The physio from CPEC came out last week and did a bit of an initial assessment of Holly. She showed us another way for us to get Holly to roll over so she can do some tummy time and help with her head control. Her head control still isn't very good, but we'll keep working on it. She's been having quite a lot of jolts lately, they happen really often. When we went back to the neuro a couple of weeks ago I spoke to him about them, we are on another type of medication to hopefully reduce them, but it hasn't done anything yet - but we aren't on a full dose yet either. We are working our way up to a full dose, we aren't even half way there yet. We should be on a full dose by January. She had her first full seizure about a month ago. We were staying up at my Dad's while we installed the new kitchen at our house. I had Holly on the bed while I changed her nappy, just as I looked away she did a jolt - which is 'normal' for her, but then she started to make a funny noise and I realised it was like she was just continually jolting and couldn't stop them. My heart was just pounding. I didn't really know what to do. My phone was in the kitchen and I was in the bedroom - I didn't want to leave her, but I know your not supposed to pick people who are having a seizure up or touch them other than to keep them from hurting themselves. My heart was just pounding. Its really hard, even last night, she woke up screaming and L and I think that it was probably a seizure that woke her up. There is absolutely nothing we can do about them, we are giving her her medicine, so there isn't anything else I can do.
Other than her seizures though, she has been just awesome since we moved - she is just so much more settled and relaxed and not crying and happy. We are getting heaps more smiles out of her, she is very responsive to you when you talk to her, she either coos back or smiles. Its been great to see. I personally think its cause I'm a lot more settled. I've got more family and friends around me and I can see them more often and I don't feel as isolated. I'm more comfortable in this house - especially now we've done the kitchen and made the House more like our own. We all have enjoyed the move, L is enjoying being closer to training and he's enjoying the change of scenery. He's been working particularly hard on the house.
We've really been working hard to get the house up and ready for Holly's birthday party - I can't believe she's going to be one. Its unreal. What an amazing year. So many tears and heart ache and joy and love.

CPEC is awesome!

We went to CPEC today for our initial interview. What an amazing place that is. It was so inspiring to see all the kids using their different ways of communicating and then we saw them trying to walk in different kinds of frames and things. Such an amazing supportive place. We met some of the physios and the OT's and the speechies, all lovely people. We were going along thinking that we might not get in or that we might not be accepted, but the way the lady was talking was like we'd already been accepted! We are so happy Holly can go there. She will be one of only 4 accepted into their baby program, We feel so lucky.
We left there at midday after a 9:30 appointment.
I had a great afternoon too with a visit from a great friend of mine. We just sat around gossiping and solving the problems of the world! We had a mini party with party pies and chocolate for lunch!
A good day in general.

Far out its been AGES!

I can't believe how long its been since I posted. Nearly a month - how did I survive??!!
Holly got out of hospital OK, my previous blog was not the only run in I had with the nurses at the hospital. I had this absolutely nasty nasty piece of work who tried telling me that Holly's meds couldn't go down the g-tube! As soon as I questioned her about it, she got really nasty towards me. Pulled in the doctors and was being a complete bitch. Anyway, I ended up getting a full apology from the head nurse because of her! I was quite pleased with that. I didn't even mention anything to her - the other nurse who was on duty at the time wrote a letter of complaint about her about how rude the nasty one was to me! Anyway, we never ever have to go back there again - ever!!
So once we were out of hospital we hit full gear packing and getting ready for the move. She came home on the Sunday and we moved that Friday so we were full ball that week. We settled on Friday after spending all morning cleaning up at the Seaford house, we got to the new house and had to clean it. The house stank of stale cigarette smoke and fake yucky air freshener. We stayed here on Friday night, but only just - the smell was awful. The painters arrived at 7:30 on Saturday morning and got to work. We had 5 guys do the whole house and they got it all finished by 5 on Sunday. We stayed up at my Dad's while the painting was going on. Crazy crazy days. We had things cleaned out and painted by Monday so I guess you could say we were completely in by the Monday.
I also became an aunt! William Lucas was born on the 16th of August - same day as his mummy! I don't think I'd be telling out of turn that it kind of hit home a little bit. Having another baby in the family, knowing that they are going to be able to do a lot more than Holly can very quickly, its going to be hard. nothing I can do about it, but its going to be hard. It is very exciting being an aunt!
What else....
I can't remember too much more at this stage. We are in the middle of organising the kitchen renovations, we;ve got a little bit of money left from the settlement of the other house so we want to do the kitchen as soon as possible. So we are picking colours and organising tiles and things.
I went to a funeral yesterday. I was so inspired by the parents, A & P. A was amazing. She had her little boy at 26 weeks and he lived for 20 days. The coffin was so small. A was so strong, I just can't imagine what she is going through, and yet, its something that is constantly in the back of my mind. I don't want to think about the pain.
Holly has been back to a few different doctors in recent weeks too. The opthomologist was a bit of a waste of time. I paid her $130 to tell me that everything is the same and I'll see her again in 6 months. Thanks!
She also went back to the neurologist for her little seizures. We have started on Epilim which is an anti convulsing medication. It doesn't seem to be doing anything at the moment, but she is on a very very mild dose, we have to increase it on the weekend. She also went back for another EEG yesterday. She looked very very cute with the little cap on. She looks cute anyway, but she was extra cute with the cap on!
SO that's about it for the last month - well what I can remember anyway! I'm sure I'll remember more later, but I should have a bit more time to catch up on more blogging now we are getting more settled.

grumble grumble

I'll write more when I get a chance, but I'm bloody pissed off right now. Bloody bloody doctors - grrrr.
Holly's in hospital - has been there since Sunday afternoon.
They didn't think she had a UTI so they didn't start her on any meds, then they came back today with "oh yes, she does have one", so they've started her today - two days after she was admitted.
They put a g-tube in cause her nose is all stuffy and because she was so de-hydrated, they gave her gastrolytes last night. That resulted in all sorts of screaming pain - she was hungry, tired, sore and it gave her really really bad diarrhea. That finished late last night, so today she was allowed to try a bottle, she just gags at it, can't swallow cause her nose is all blocked. So they put milk down her g-tube, and that was fine. At least she wasn't hungry again. Until late this afternoon, and some wise guy decides that even though they've only tried milk down the tube once, they aren't going to try again, they are just going back to gastrolytes. So the poor little thing is back to where we were 24 hours ago. Bring on the hungry, tired, sore and diarrhea again!