the last few weeks

Life seems so busy, doing nothing in particular!  Since I last posted we have been camping, weather okay (ish!).  Daniel had 3 days in the hospice for respite, which he loved, and so did we!  Felt really funny sitting outside the tent, Louis off playing with other kids, and being able to READ A BOOK.  We really made the most of the three Daniel free days, and had the hangovers to prove it.  Daniel came back on the Friday, and we had two more days there, when the really really noisy neighbours from hell made us leave.  They thought nothing of talking and drinking until 2.30 in the morning.  I know I should have been brave and told them to **** off, but I didn't and like the woss I am, drove me and Daniel home at 3 am in the morning, as he had woken up and was very miserable.  We did see a badger on the way home, and a night in a comfy bed was good!!

Daniel has started school.  A major milestone in our lives.  He is at the special needs school called Woodfields, which is on the High School site, so I now have four kids, one in each school (Primary, High, 6th Form & Special Needs school). He is only there Monday and Tuesday morning and Thursday and Friday afternoon, but it is so great.  

I have just come back from four days in Scotland seeing my wee sis and family.  I had a fab time, and Daniel was at the hospice for 5 days, the longest he has ever been away from me.  I did miss him.  My sister's kids are so great, Cora 8 months younger than Daniel has the sweetest voice EVER, and everything I said, she would question with "did he"? (when I said Louis liked peas!) "did you?" when I said I came up in an aeroplane.  Finn is a bit quieter but has such a cute smile, and no fear what so ever.

Now we are into the run up to Christmas and autumn seems definitely here.  We had our last swim in the sea, (or so i think, I may be proved wrong) and Daniel absolutely loved it.  I keep thinking about how he will be next year.  Having even more fun, I hope.  The weather is colder and I will start to worry about how to keep him warm at night, as he HATES to have covers over him.

His last back appointment, the consultant requested some x-rays done.  We have had them done and are now just waiting to hear.  He will have a rod put in his back at some point during the year, later I hope, but we will just have to wait and see.

the dreaded `back` appointment

Louis was a star yesterday and came with me and Daniel to the scoliosis appointment.  I hate waiting for appointments and this one was no different.  10.15 appt time and we finally got seen at 12 noon.  Daniel was okay, surprisingly, laughing and chatting to the consultant.  He wants to put a rod in Daniel`s back and thinks that he has put enough weight on to make it possible!  We will see him again in December, as I really want Daniel standing and maybe even walking before the op, so I have until then to get him as mobile as possible and also eating!  Not so much of an uphill task as a blooming mountain to climb!!  We left the hospital and went to Aylsham Barns as the SCOPE people were meeting there.  Got there late, and stayed a while, but both Louis and Daniel (and me!) were pooped.  

Now really have to try to get myself into shape, as I am going to need all my strength to cope with the next few months.  Have been going to pilates, but need to get to the gym more, go swimming, do some classes and STOP drinking so much red wine (it sure will be hell!!)  Started as I mean to go on by having NONE last night!!

swim in the sea

Knew today`s sun shine would not last so went down to the beach in the morning.  Tim and Louis went in, very brave, and then Daniel showed signs of wanting to.  I took him to the edge and he loved it.  Tim took him deeper, and he was so happy, and it was FREEZING!!  He spent ages at the edge where the waves broke over him and the seaweed covered him, and he was so happy. Apparently the waves are really big now (6pm) so we are off again, not sure if Daniel is up for body boarding or not!  I will just be taking my flask of g & t!

day two, oh this is so exciting!!

Yesterday, well, plans to go to Wroxham Barns were called off after monsoon type showers in the morning, thought the place was going to flood!  Lovely Hazel took Daniel off to Ladybird playgroup where they had a drop in session, so got some quality time with Louis where we played Monopoly (I won) and Scrabble (he won!).  The afternoon, of course, was lovely sunshine, so different from the morning, but we were all too tired out.  Daniel feel asleep, breathing lovely without his tube in his nose (!) and I snook upstairs for a quiet read and too fell asleep (just like my mum!).  After tea, we did go down to the beach, and watch the sun set while throwing stones into the sea, and feeling so happy that we lived here.  Daniel had such fun saying his usual `ready, steady, go` with every stone thrown, and my heart squeezed just a little bit to hear him say those words with his lovely voice!!

Today, Daniel was at the Childrens Centre Playscheme in Norwich from 10 - 3 (bliss!)  He had a totally fab time there two weeks ago, so Tim and I made plans for some full on Norwich shopping (not that I like shopping very much!!).  Dropped a happy Daniel off after leaving Louis with his friend Harry.  Headed straight for Borders where we spent too much money, but got loads of lovely books.  Didn`t like the clothes shops much, feel too fat for most of the clothes, Tim spent a small fortune in Next and I spent £20 in Lush (but got a £25 pot of some potion free!!)  Then onto the whole point of the day, lunch.  Went to Loch Fyne where Tim had oysters and raw tuna (!) and I hade pate and pasta (oh and two glasses of red).  Really lovely eating out, knowing kids are okay but not with us, and making those plans for the future (eg when we are old and kid free we will do this EVERYDAY!).  Picked a very happy Daniel up, drove home to the most terrible rain, washing still on line, boys dont think of taking it in!!  Now am contemplating putting chocolate spread on Daniel`s toys, oh, and jam.  That is the advice to get him to start eating, but I don`t think I can stand the mess!!

first day of my new blog!

Well, this is the first of what I hope to be many accounts of my little fella.  All down to Joobs for making me, but what a nice way to keep track of his very busy life and also let others know what is going on with him.

My other kids never had such a full and constant changing diary, nor do I, but I am sure Daniel would settle for boring routine rather than this constant round of hospital visits and people coming here.

Well, yesterday was a full day.  Daniel and I were filmed by his old speech and language therapist, for her students at UEA.  It was really great to talk about when he was born, all that has happened to him and how far he has come.  He was good to, so I look forward to watching the DVD.  In the afternoon his lovely physio came round and brought a Kaye Walker for him, to help him walk. He didn`t like it at first, but today has been standing in it for over an hour.  

Rained so heavily this morning, thought it might flood, but now the sun is shining so I think the beach beckons.  Daniel loves the beach and I love it too.