Time Flies!

I thought it was about time I updated this blog! The beautiful Rosa Mae is now 4 ½ can you believe it?! In general, she is doing amazingly. She has been going to school for just over a year and absolutely loves it. Initially she went three mornings a week and one of us stayed with her, she has gradually accepted being in her chair more often and got used to being fed by people other than Gareth or I. So much so that in September she started going to school for three full days (4 since Christmas!) and travelling on transport which is amazing for the whole family. As we are at least half an hour from school it was felt by all that being right at the end of a long bus route would be too much for her twice a day. Local authority have provided a taxi with escort for her this has given the rest of the family so much more freedom and time we are still getting used to it! She is always excited when she knows it is a school day and we envisage taking it up to five days by the end of the school year. She has a lovely team down there, getting better all the time. The new physio and O.T. have promised not to get pregnant so we are hoping for a bit more

continuity now (we are on our 3^rd of each!) She has a brilliant class teacher Emily and team of T.A.s, they 'got' Rosa really quickly and she likes them very much.

Her paediatrician, Roger Jenkins is proving to be very good too, we all like him and he is very thorough. He is also the medical director at Little Harbour so that is helpful too. Rosa still suffers more than anything from tummy and wind discomfort but she is in a good phase at the moment, possibly because we are trying a new homoeopathic remedy or possibly because she recently started on a really low dose of Broflex to try to control her extension and any discomfort she may be having from dystonia. Either way very good news.

We have been to Little Harbour (the new childrens hospice) quite a few times, it's a wonderful place, both the kids love it and can't wait to go back. It is different from Little Bridge in some ways but our perspective is a bit different too I think. It has been nice to have been going since the beginning, being part of it as it develops.

Rosa is doing well in her contraptions too. She recently got a Buffalo stander at school and really loves it, she seems to have more head control in standing or maybe just more incentive to look around! She is also way more accepting of her wheelchair, not that she doesn't still have ragey, sicky moments but on the whole she seems to understand that being in it facilitates other more fun stuff. She travels better in her wheelchair than she does in her car seat. Her Pea Pod is still her favourite seating though and they also have one at school which is really helpful.

We have some finally sorted some direct payments (and we thought it was complicated in Devon!) Rosa's Uncle Charlie looks after her fairly often which they both enjoy and when he can't we have another lovely lady called Maddi who we met through friends.

In general we are all doing pretty well. Ithan is amazing, still in a rush to do everything and pretty much running rings round us all. He just started a couple of mornings a week at nursery which is very good for us all! He is a bright sparkly star and gets sweeter with Rosa as time passes. They amuse each other quite a lot. Gareth and I are fine too, we are just starting to find a bit more time for work and even some leisure, G is doing some woodwork and I'm doing some trapeze believe it or not!

 I will endevour not to leave it so long next time!