Tuesday, 30 November 2010

Noses and birthdays

Seth grabbed my nose. We were playing 'where are your toes, where's your nose, where's mummy's nose etc etc....'. We play it every so often. However, this time was different. When I got to where's mummy's nose Seth touched my cheek. It could have been an accident so I persisted and this time Seth grabbed my nose. Course it could still have been an accident but I'm willing to believe that it wasn't. Naturally I was rather excited and we'll be playing that game a little more frequently from now on!

Today it's Seth's birthday. He's 3 today and on Saturday we're having a party. I don't know whether he'll understand the concept of his birthday (in fact I very much doubt it) or that he's having a party but he will know that he's got lots of kids around him and that he's getting a lot of attention and that's enough for me right now.

Saturday, 27 November 2010

A positive experience!

Earlier this week we had an appointment with Seth's consultant. As soon as we arrived I took Seth out of his chair and stood him up, holding his hips. The doctor was very pleased, asking how long Seth had been able to do that. So I asked Seth if he wanted to walk. Seth immediately stepped forward and started walking wobbily around the room with me trailing behind on my knees. The doctor's jaw practically dropped to the floor and stated that he never expected to see Seth walk. I just smiled and half shrugged - it was hard not to snub my nose at him. I told him that he's talking now and the doctor excitedly asked what words he was saying. I had to explain that when I say 'talking' it doesn't mean that we can understand anything he's saying! We discussed his fits - Seth has had 2 fits in 9 months which also surprised him. Although it's still a big concern he said that the longer we go without one the risk decreases. Anyway I listed all of the things that Seth can do now that he couldn't do 9 months ago when the doctor last saw him and I left on a real high which is another first!

He never mentioned another MRI scan and I didn't either. I had planned discussing my ideas about the CDC assessment and how the cognitive assessment doesn't appear to take into account visual difficulties. It's something I've previously posted on but looking back I can't actually find that post! Anyway, I completely forgot in the end; unsurprisingly discussing Seth's actual achievements distracted me from talking theory.

Saturday, 20 November 2010

Other things that happened this week

We also took receipt of another walker on Monday.
From Raising Seth
The physio and rep went to Seth's nursery so I only saw it when I picked him up. It seems a little high but it's the best one we've had so far, I think. We've got it on trial. We had a visit from our SENCO (pre school teacher)on Thursday and she seemed pretty unimpressed with it. Wanted to know what questions I had asked about it and suddenly I felt at fault (again) because the physio hadn't phoned me to discuss it at all. The physio did in fact phone on Friday to see how we were getting on with it and the whole time I was thinking 'what questions should I be asking'? She's the expert and I feel that I should be led by her whether it's suitable for Seth, or not. It's the smallest size they go so while it it a little high, he will grow into it and she tells me that she's spent a long time researching his options. I did say that the knobbly bits at the front were a risk because Seth drops his head forward and doesn't notice when there might be things to smash his face into and I wasn't sure if adding handles would help because that would be a bigger target for him. I've covered up the knobbly bits with foam pipe covering which make them safe and she seemed satisfied with that. Should I have been more demanding and asked for something from her to cover it? I'm still waiting for a foam wedge from her that Seth is supposed to be using as part of his physio excercises so I'm reluctant to start asking for anything more complicated!

Anyway, that was the last appointment I shall have with the pre school teacher. Because Seth starts Fairfields (special education school) in January for his pre-school year and they will take over everything - speech and language, physio, pre-school stuff. It'll be great cos everything will be coordinated and he'll get the therapies much more frequently. I've had to complete an evaluation of the service that the pre school teacher has provided. Its difficult to complete because I think I respected her knowledge and expertise over everyone else I've dealt with but I just didn't get on with her on a personal level and the nursery dreaded every one of her visits so I don't feel she built up a very good relationship with me or them. Craig found her great though and really helpful on a personal level so I know with me it was just a personality clash which I need to separate out when I'm evaluating the service. Its hard to be dispassionate though when it's about someone who came to the house to talk about my son. I also realise that part of my anger at the professionals we are involved with is due to having something I can be angry about and fight. I can't do anything about Seth having these difficulties and so I think sometimes it's about having something tangible to fight. Of course part of it is their lack of communication and working with colleagues! Grr.

Thursday, 18 November 2010

A crazy day

We picked up Seth's new wheelchair today. I was so looking forward to it; we've been waiting 4 months for it and I was getting really frustrated with his old one. One of the big reasons for wanting a new wheelchair was the lack of a tray. Seth can't hold things so when we are out and about we can't encourage him to play because everything falls off his lap. Plus, it makes it more awkward with feeding. So I discussed this with the Occupational Therapy wheelchair service and today was finally the day....there's no tray. When I asked why, she went away to check her notes and came back saying that she never wrote it down as a requirement. 'But we discussed it at length', I replied. Her explanation was that her remit is postural necessities and if a tray isn't going to help with this then we'll have to get it separately, or possibly contact the physio team - I'm not sure if she meant the Physiotherapist or the Occupational Therapists with whom she shares a building but either way I wasn't too happy. I did kind of explode at this and say that it would have been useful if she had told me previously about this. We then spent an hour adjusting the chair to fit Seth and when she was adjusting the foot straps I asked why they were necessary. She explained that these, along with the other straps help his core stability so he can use his hands. 'but' I replied, 'without a tray he can't use his hands'. I got no response to this.

Apparently the rep for chair manufacturer comes in the 6th or 8th of December to the office and she'll ask him then if it's even possible to retroactively fit a tray, because as it wasn't even built into the specification it may now be too late. So she doesn't even intend phoning him and so I've got to wait 3 weeks before I even know if it's worth phoning around to see if other departments will fund the tray.

On a plus note the chair is purple and I still think it's an improvement on what we had, even if it only meets half of my criteria for a new chair.

Saturday, 13 November 2010

Back home again

Wow, well that's the holiday over. I really wasn't ready to drive back home this morning. The weather was pretty atrocious but that meant listening to amazing storms tucked away in our cottage, and we never had intended doing too much, anyway!

Seth and I came down with stinking colds two days in and sleep, as usual, alluded us but we still had the most amazing time together. Seth's bed was a normal sized single, as opposed to the toddler sized one he's normally in so one morning I crawled into bed with him for a cuddle. Seth kept turning his head to look at me and then just started giggling. It was fab.

Because he was full of cold we didn't tackle any more specific physio excercises but Seth has spent the week drinking from his cup, rather than a bottle and played lots of turn taking games in the car; him making sounds and us copying him. To top it off, and Louise you'll be so proud, Seth totally made a choice between milk and bed by selecting the 'object of reference'. We weren't sure which Seth wanted so I offered him his cow print cup which he always get given just before a bottle of milk and his bear with a bell in that gets jingled every bedtime. Without hesitation Seth lifted his hand and touched the cup. To be sure we did it again and he clearly lifted his hand and touched it again.

So yeah a pretty amazing week. Lots of giggles and proud parents.

Monday, 8 November 2010


We're on holiday this week. It's a lovely cottage with a view of the sea and just what we need to slow our pace and simply enjoy being together as a family. And there is no excuse for not trying new things with Seth because we can take as long as we need and there is nowhere we need to be. So I've brought a 'next step' cup to finally try to move Seth on from a bottle and also angled spoons to help Seth feed himself. I forgot the full frontal bibs so we're going to get into a mess but there you go - there's a washing machine.

And so far Seth is really responding to the relaxed pace and Craig and he are having a really lovely time together. He drank for the first time from the toddler cup without any stress or panic this morning. He has to bite it to release the liquid and usually he panics, clamps his teeth down and starts drowning! & also this morning I kneeled him down in front of a fluffy cushion and stretched his arms down so that he could feel it. Then I realised that he was completely supporting himself with his left hand. He stayed like that for a couple of minutes until he gradually sank down. Another first! We did a dance of triumph afterwards.

I'm hoping that I have relaxed a little, too, after this week as I've felt perpetually tense these last few months.