Happy New Year! (I started this in early Jan and its been sitting in drafts eversince...)
I thought I would try and write a bit before too much time steals by again. Christmas and New Year passed in a bit of a whirl as they are prone to. Thank you all for your lovely cards and wishes, it was nice to hear from and or see lots of you over the festive period. Sorry I totally failed to do cards this year, but the thought was there! We all actually had a lovely Christmas which was just what we needed. I had felt like I was being a bit obsessive in the planning of it when we divided our time up between our two families exactly and practically to the minute but actually it meant that everything went really smoothly and it was more relaxed than it ever normally is. Rosa was on really good form (apart from her usual 'I'm away from home, don't think I want to sleep much' thing for most of Christmas eve night!) she seemed to genuinely have a good time and enjoy all the people and presents! We managed to catch up with everyone and squeeze it all into just over two days. We came home very tired but having had a great time and spent a few very mellow days at home. To be honest I think that would have been enough really but we had planned to go up to Sussex and have a baby friendly New Year with our lovely friends Sharon and Miles and not so little Stanley and Lucy and Will and Marli and felt we should make the effort.
I have been struggling to an increasing degree with sciatica over the past couple of months and just before Christmas it reached an unacceptable level of pain, one of the reasons why everything has seemed more difficult and more exhausting and also one of the reasons why I wasn't convinced Sussex was the best plan. I have been to see a chiropractor three times and have also been referred to the physiotherapist at the hospital. They have both given my exercises to do, which I'm sure I don't do enough and instructions to rest...hmmm right; G is fab but he can't do everything! The physio gave me crutches when I went to see her after Christmas. Actually these are brilliant because it has been so painful I haven't been able to walk even short distances and was starting to feel quite desperate, useless and frightened. Not good things to be feeling and hardly constructive. The crutches just mean't that I can be mobile again at least partially under my own steam. I don't use them all the time by any means but for going round the supermarket or up Roughtor (!) they are amazing and have changed my whole outlook for the moment. I am still pissed off about the pain but it feels manageable and I can at least imagine being better again.
So anyway, New year was lovely and it was really nice to catch up with old friends and neighbours despite feeling a little out of it. We were really glad to get home and sort of commence a kind of hibernation, not entirely planned but the morning after we arrived home we woke up to a winter wonderland as much of the country did it seems. Very beautiful but also totally cold as we are not used to and lethal too (my crutches didn't come with spikes unfortunately!) Consequently we did stay in by the fire watching lots of movies which it seems to me isn't a bad thing to do in January. Unfortunately G and Rosa also both came home with a tummy bug, really unpleasant for them and poor Rosa has still not fully got her tummy back to normal. Things like that always really knock her for six and she has suffered with a lot of trapped painful farts which are particularly horrid as there isn't really anything you can do to fix it for her. It has been waking her up at night which has its own knock on effect on us all. At last though, in the last few days her appetite seems to have returned and with it her happy temperament which is a lift to us all. Curse her sensitive tummy, she definitely gets that from her Daddy, he was not on top form either for quite a few days so really you can see why watching movies by the fire seemed the only sensible plan.
On the equipment front things have moved on quite a bit. We now have her first wheelchair/buggy which is brilliant thing and G immediately bodged the chair part onto our three wheeler so we can use it for proper walks as we have a little stroller for town and short trips which is much more maneuverable, the seat part is anatomically moulded to the shape of her body so in theory should be as comfy as can be but she doesn't seem quite convinced! We are still having some 'Rosa hates her buggy' issues but not as bad lately, fingers crossed we're winning! The long awaited special chair also arrived which once again is a top notch thing, of course it seems much bigger in our house than it did when we saw it at Pathfield and I predictably found the arrival of both things a bit upsettin, they are fabulous pieces of kit but I don't want them....anyway it isn't about me, so I got over that quite quickly in order to get her fitted for it and find that it is going to be much more useful than the temporary one we had been borrowing for the interim. It seems much less restrictive to her upper body and so easier for her to forget she is strapped down and get distracted by what's going on in front of her which is the idea. Our resolution to start feeding her in it hasn't really happened yet but it will, there is plenty of time.
There has been some predictably but quite flattening news about the counselling, the funding that Jane was so sure we would get to pay for a private counsellor has been refused because apparently that isn't what those particular funds are for, despite the fact it states it is 'money to help the family', they would pay for a cleaner but not someone to help us stay sane through all this craziness apparently. I was upset and angry when I found out, I still find it quite unbelievable that we have been asking for this for a year now and to no avail. I know loads of people that have had counseling sessions on the NHS for much less life crushing happenings and quickly too, but as Dr.Moody told us right from the start North Devon is crap for counselling and he was certainly right. Jane says she is going to chase it up and try and appeal the decision and seems quite confident but I have to say my confidence in her is fading. I wish people wouldn't make promises they can't keep. Anyway, I'm not holding my breath, we may just ask lovely Steve who we saw before to re-assess us and this time answer the questions as if we are depressed, sometimes we are not far from it but that really is a last resort, we shouldn't have to do that.
On a more positive note, not only did Rosa start a sensory programme over in Bideford with Nicky her lovely nursery nurse at the beginning of the month but also we went back to Highfield today! hooray! It has been off limits to us for 7 months as they were dispensing tamiflu vaccine from the building and we didn't feel we could take the risk but the flu clinic has finally gone. Both groups are really great. The sensory programme is held in the sensory room at Bideford surestart centre and focuses on different areas of the body (hands, feet, face so far) each week, we sing and do UV visual work and it is great fun. Nursery is also fab and we're so glad to be back although Rosa wasn't feeling very well today, again so she wasn't able to get as much out of it as she might but fab to be back.
Roas's tummy is very bad at the moment, it seems we have gone backwards and we are back to screamy painful mealtimes and constantly trying to get wind out of her, she can hardly be put down and is frequently in considerable pain, quite difficult for us all. I phoned Peter Smith the homeopath again this evening and he had some suggestions so we'll see. It is very draining though, we just want her to feel better. I keep telling myself it is just another duff phase but it is hard not to wonder if this isn't the start of a bigger badder thing. I'm sure it isn't but one does wonder. We try very hard not to entertain these thoughts but in the short dark days of winter it can be hard. Spring must be around the corner though, I saw snowdrops in the park yesterday and we are off on holiday to Italy soon so lots to look forward to. I'm going to post this now as it has taken me a month to write and more news is breaking all the time! :-)