I did attempt to get to grips with some fangly technology typing in the garden earlier but by some Luddite special talent I managed to erase everything I had written and I still can't work out how GRRR!
So here I am again.....Rosa's birthday party went extremely well, it was really nice to have such a collection of loved ones all in one place and best of all Rosa was on fabulous form, she had a lovely day which was all we wanted out of it really and of course she looked beautiful in her posh frock. The weather threw many and various things at us but eventually settled on sunshine having worked its way through hail and horizontal rain in the earlier part of the day. The food was scrummy and the atmosphere was warm and mellow even when the weather wasn't. Rosa turned out to be a very big fan of Birthday cake (no surprise there!) and enjoyed all the pressies and socialising very much. Thank you all for all the cards, thoughts, pressies and general love we felt on Rosa's behalf. The grown ups carried on partying after the babes went to bed and much fun was had by all.
I can't believe another week has whizzed by again, and once again we've had extremely happy moments and some real heavy gloom in places. Makes us feel quite bi-polar but we are trying to make the most of the ups. I've been trying to write this now for days and days and keep being foiled by tiredness or technology but I'd just better get on and post before another week has gone by. I say we've had gloomy days but in the larger scale of things happy Rosa has definitely been here far more than grumpy Rosa, it is just we have so little stamina for the latter. We had another great day today. She does love hydro therapy, at the moment she isn't particularly working to a programme as Sally the physio hasn't had chance to create one for her so we are basically splashing about for up to an hour in an ever so warm pool in our local special school. She seems completely relaxed in the water and I just support her head and the rest of her body floats very freely. There is lovely lighting and lots of toys and floats and mostly only one or two other children, Rosa seems to be the youngest by quite a long way and probably the calmest too. We are going to try and take a camera next time so will post pics if we are allowed to take them.
We did get our music therapy session filmed this time although we tried lying Rosa on her back and I'm not sure if she enjoyed it quite as much as usual but still she had a good session and seems to know as soon as we get there that she's in for some fun. Simon continues to amuse and bemuse G, he thinks he was going to eat one of Rosa's tears the other day and thought better of it at the last moment, we shall see when we get the video back but he is a hippy and baby tears probably make you live for ever when ingested.
Nursery is fab as always, largely due to Nicola, Rosa's nurse who seems to be the only constant. Because of their ongoing staffing problems there are changes afoot, it looks like we might lose the Thursday sessions altogether which we think would be a real shame but apparently the powers that be think that it is better for the carers to come to the child. This may be so for some people who have a long way to travel but we think it really benefits us all to get out of the house and Rosa always perks up when she gets to nursery as she knows its fun, having a home visit is great but she won't get to interact with other kids and we already have portage at home. Of course its not up to us, although Nicola said that she does pass our comments on. There are other groups we can go to and we'll probably look into it when the time comes, maybe it'll provide us with the opportunity to meet more parents in a similar position.
We went to see Dr.Moody on Monday as we have been getting a bit worried about Rosa's rattly chest, it was suggested that she may be aspirating (inhaling) her food and/or drink and this can cause chest infections and all kinds of nasty complications. It was mainly suggested by Judy the speech and language therapist, who'd been prompted to look into it by Dr.Arend. I actually got a bit cross and upset about it all initially, I know I'm sensitive but I'm bound to be, eating and sleeping are two of the few things Rosa can do well so when the medical folk start questioning her good stuff it does flatten me a bit. So anyway we went to see lovely Dr.Moody who had a really good listen to her chest and said she sounds great, hooray! He said that she is a bit rattly but it is all at the top (nose,throat etc.) and the sound transfers because their respiratory system is so small. Huge relief...normal baby stuff yay! He also asked us how we were getting on with everything else and we told him our bloods weren't back and we hadn't had any luck with counselling. He said he would chase the bloods for us (via Dr.Arend, hmmm!) and also if we were happy for him to do it he would refer us to the children's hospice so that we could access the facilities they have there, including counselling service. It is a bit of a biggy but I know that it would be really good to go there and see it and meet the people, there will also be other parents in a very similar boat. We don't want to rush anything but it is also really good to know what is out there. (Helen says they have a jacuzzi!)
We continue to struggle to try and reach the summit of our ever increasing mountain of paperwork. My taxes are the latest thing, hence my inability to blog as it has been taking all my evening time and energy lately. We need those figures to finish our application for housing benefit and council tax benefit which we could really do with right now. Very boring and never simple but we will get there in the end, it seems because G and I are not partners in the business sense we can't use his tax allowance at all even though he has done nothing but work for the business since we moved...I think I'll have to phone them to clarify, awkward buggers.
We have actually been doing a bit of proper work in the odd moment too. We have a show in Appledore very close by the weekend after next and are trying to get some work together for it. I do love my moments in the shed, it is so basic, constructive and therapeutic to make things. A wonderful taste of normality.
On that note I must call it a night. Another lovely visit from old friends today, the garden blooms and the sunshine is getting warmer.
Another day tomorrow, more soon.