Depressing

We are going away this weekend and are going to do a lot of cycling. Finley will be on the back of Peter's bike in Jack's old bike chair. I was pondering on whether Finley's helmet would protect him. I think not, the helmet is not designed for crashes. So I dug out Jack's old first helmet. Not a chance, it didnt fit around the sides, so then I tried his 8 year old sister's hat, oh my god - this just about fits and looks absolutely ridiculous it's so huge on his head.

I cried this afternoon - this has been the first practical thing that has given us problems. Up until now its just been what he looks like.

Finley's first steps

Finley took his first steps today at our music group, he has been balancing on his feet for a while now but not putting one foot in front of the other until today.

Helmet is going really well, he is sleeping beautifully in it and I am so happy that it appears to be a better fit. I took it off the other day when we had friends round and they said they can already see a difference. We thought so too but were wondering whether it was just our imagination.

I'm really pleased - I've had my first comment on this blog!! Thanks Jessica from Seattle.

First Overnight

Finley had his first overnight with helmet last night. Usually I need to settle him a couple of times before he drops off in the evening but he went out like a light first time! Then he slept all the way through until 6am.

What a darling little boy we have!!!!

Feeling positive

Went up to LOC this morning. Fin had worn his hat for 4 hours by the time we got in to see Saeed. It was weird because after the lipstick test (putting red lipstick on the sore patch and the putting helmet on shows the exact place it is rubbing inside) it didnt show up as rubbing anywhere, just a little tiny bit at the bottom.

Saeed made some adjustments and said to put it on once the redness had gone down later today. I put it on for the afternoon 1.30-5.30. When it came off it was looking really good - still a bit red but a much smaller area than usual. So tomorrow's plan is on all day with a quick check half way through to make sure its not going horribly wrong then first overnight tomorrow night if all goes well during the day.

Finley is becoming a bit of a climber: He has worked out how to climb on the sofa and from there up the back to the windowsill behind - of course no idea about how to get down. I have had to put cushions under the sofa seat to make it too high for him to climb onto. But the worst - he climbed out of the bath yesterday, I had my back turned for a few seconds and looked round just in time to see his head hit the floor. He's ok but there were lots of tears. Peter reckons he won't do it again!!

I think with all these antics its probably safer that he does wear something to protect his head.

Pictures

My new haircut!













The dreaded sore patch - this is after 12 hours off overnight














My head shape - no change since the last pictures although I think it doesn't look so bad with my hair short.

Day 3

4 hours on one hour off today, the sore on the side of his head is not really recovering well in the hour off. Its not a bump (yet) but I think it needs an adjustment. I spoke to LOC, they said I could go up tomorrow but we've got an appointment on Wednesday morning and we are really busy tomorrow with kid's stuff so we've agreed to do another 4 hour programme tomorrow and then get an adjustment on Wednesday. Will have to see what it looks like tomorrow morning and make a decision whether we put it on or not. If it is at all red its going to stay off until Wednesday - we cant risk another 2 weeks of bumps and scabs.

We have given Finley a number 3 hair cut all over - he looks like a little thug!! But it must make his head much cooler in the helmet, makes it a lot easier for us to see red spots and makes it much simpler for applying cream.

He seems to be adjusting better heat wise and has not been very sweaty at all in it today.

Days 1 and 2

Here we go again - 1 hour on 1 hour off yesterday, 2 hours on 1 hour off today. We havent done very well today in that its only been on for about 4 hours in total. Its so easy to think that when he is upset its because of the hat. This morning he had it on for an hour and then became increasingly upset, after we took it off he had a long sleep so he must've been really tired. Then again when it went on later he was very tearful but this was due to hunger I think. I couldn't believe how sweaty his head was, absolutely dripping from the hat and loads of droplets on his forehead. Quite shocking really. The lump on the side of his head is all but a little red dot now but it has been getting redder under the hat. I'm thinking of taking a photograph of it tomorrow morning when it is just small and then again after bath tomorrow night just as a record. I'm really worried this is going to flare up again.

Tomorrow will be the real test with naps and a normal busy Monday.

A bit more positive

I felt sick in my stomach going up to LOC this afternoon. I just really didnt want to go through this again.

Feeling better now that the new helmet has been fitted. Finley did cry a bit when it was going on and off but towards the end he was getting quite tired. Saeed showed me that the area where the bump is is now not touching the helmet at all by using the lipstick technique. He made the measurements again and Finley's head has grown 3mm in circumference - 1 mm to the side and none at the back since the last review 3 weeks ago.

Disappointing but I'm finding the measurements a bit hit and miss and I guess when they are doing them by hand what's a mm here or there. I wonder why Saeed always wants to know the previous measurement before he starts, it makes me think that there is a bit of room for manipulation maybe as a form of incentive or something?

Finley is at nursery on Friday all day and it would be unfair for the staff there to keep having to take it on and off so we are going to start again on Saturday. Hopefully we will have a smoother ride this time and it will all become second nature in a couple of weeks.

New Helmet tomorrow and thoughts

Well Finley gets his new helmet tomorrow. I cannot believe it, it seems like so long ago that I am back getting used to his head shape. The bump is STILL there albeit a lot smaller and the scab only fell off this afternoon. I'm having mixed thoughts about this new helmet. His fontanelle is almost closed - probably only 2 or 3 mm to go. LOC said once this is shut then treatment must finish. I'm not sure why this is and will clarify tomorrow. I'm wondering whether we are going to make that much difference not and perhaps we are going to be the example of what happens if its left too long. With all the troubles we have had its actually been nearly 8 weeks since our first visit to LOC.

I was out the other day with a friend at a play area and she pointed out a boy with brachy. She said she wouldnt have been aware of it if it hadnt been for Finley and although I was fascinated to watch this little boy, who looked about 4, it didnt really look that bad.

I'm going to ask LOC to measure his head again tomorrow - will be interesting to see whether there has been any change and in what direction!