Saturday, September 30, 2006
Rediscovering a social life!
Hooray, due to the fact we were supposed to be spending this week in Great Ormond Street, I actually managed to find some time to get some solid hours of work done, rather than snatching opportunities here and there, and, even better, remembering that it is really nice to talk to friends and meet people!
I have to apologise for being really rubbish at updating the blog this week though so I am going to have to go back to this time last week again. Hope spent last Saturday at a sleep over party so Ellie had some time for "mummy time". This was very well timed as the funfair had arrived just down the road. Ellie and I had a great time on the simulater and twister, eating candifloss and hotdogs and watching a pretty impressive firework display. It is very rare that we have these opportunities for one-to-one time and we both really appreciate it. Hope are planning an evening together soon. That one will probably be a little more cultured as Hope's is currently reading her way through Shakespeare re-written as introductory stories and is very keen on seeing a play for herself. She is also desperate to see a West End musical so we'll have to see what we can do!
Sunday was a big day for William as he started Sunday school. This is the first formal group he has been a part of and it will take some time for everyone to get used to his needs, especially the frustration and agitation that can come when he is overwhelmed through not being given sufficient time to process each individual piece of information he needs to react to. I will be staying with him for the time being but we plan to train enough people in basic Hickman line safety and pump alarms etc so he can have a one to one volunteer and I can spend some weeks in church for the whole service. He really is becoming quite the grown up boy and starts at the "Opportunity Playgroup" this week for 2 afternoons a week. Again, I need to stay as there is no nurse on site but will be in a parents room rather than with him. It will be so good for him to mix and play with other children and he wil get his speech and language therapy and occupational therapy there too.
One thing he will relaly enjoy at nursery is art and craft - he loves painting and sticking. He was making a really funky frog on Monday and ended up giving himself a rather punky look. This did not wash out with baby wipe so William was quite a scene on the school run home. The girls were really disappointed that I washed it all out in the bath!
On Thursday, I met Jo. Jo's little boy, Daniel, sadly died of complications following a liver and bowl transplant. He was a gorgeous little boy and you can read more about him at http://www.makingitbetter.org.uk/ (I still haven't learned those hyperlinks!). Jo and I had chatted on the phone but had not met. We had a lovely lunch together and I quickly felt I was making a new very close friend. After taking Jo to the running shop to get her running shoes, oh yes, she is another who can testify to the addictiveness of beginning with this sport, I picked up the girls and rushed to swimming lessons. There I chatted with Mechelle, another Mum I have met through her daughter and William having the same buggy. it is amazing what a close bond is struck up very quickly when two Mums, who have children with similar medical or special needs, open up and share their experiences, heartaches, hope and fears. Mechelle is moving up to Scotland today but we will stay in touch and saying goodbye was saying goodbye to a friend, even though we only met a couple of weeks ago. Later that evening Barbara, a friend fomr church came round for a chat. It was an amazing day as it has been ages since I have spent so long talking to friends. When things are very hectic and stressful, I am so tired when I finally finish everything that phoning a friend for a chat or to arrange to meet seems just too much. I really must make more effort though as it is so important. Paul also managed to hobble out (and fall over in spectacular fashion!) with his friends on Thursday. I'll let him tell you all about that on his blog (linked on this page). I did remark on the trend that seems to be emerging when he has a night out...
Today, we decided to make the best of the sunshine (between the showers) and met Jo and her son Alex at Crystal Palace Park. Hope had capsized her dingy 5 times today as she has progressed to the "Topper" which is a bit harder to control than the "Opy" she has sailed up to now. The poor thing was drenched and her face was a picture when I told her of the plans that had been made whilst she was on the lake. Even her spare clothes could have been rung out. A quick trip to a charity shop en route soon had her comfy again without breaking the bank! She will be using wet suits from now on... It was really nice to chat with Jo some more and the children had a great time. Last time William played on these swings he was on oxygen so it was lovely to see how far he has come. He had a great time walking around (with me running after him to steer him away from the swings and roundabouts). The girls held his hadn as we walked to the swings and it was so lovely to see them together. Ellie adored Alex and really enjoyed playing with him. I did get a couple of comments from other Mums about Williams unique little walking style. Both were very supportive and encouraging though as we watched William fall down adn pick himself up and wiggle around some more.
Next week is another busy one with the physio and occupational therapist coming round to see how we can brace his pelvis to make it more secure. We also have to sort out his buggy/wheelchair as he continues to slump in the current one but, more worrying, is that he is now tipping it back when he gets agitated, especially when he has his TPN on the back as the bag is pretty heavy. We have a couple of other appointments and William starts the playgroup so we have a new routine to get used to on Wednesday and Thursday.
Well, this has turned out to be a very long entry so thank-you and well done if you are still with me! There is a lot more I could have said too. I will be much better organised next week and will blog more as we go...