Re-scan and new helmet

On Sunday the bump had healed with the scab dropping off. Finley wore his hat for about 4 hours and the bump was starting to look really red again. By Monday after another 4 hours wear the scab was back and the area was still very raised.

Today at LOC, Saeed re-scanned Finley's head and we are going to get a new helmet in 2 weeks time. Hopefully this could be the beginning of better times.

We had a look at the two scans and it looked like there was a bit of growth at the back on the left hand side but on the side view there didnt appear to be much difference. Hardly surprising as he has had so little time in it.

Finley has been quite ill anyway with a temperature, conjunctivitis and streaming cold so I'd have not been happy for him to have been having to cope with the helmet on as well. His little face looked so sad today with feeling under the weather - he really looked like he was feeling sorry for himself, poor lamb.

That's it now for a couple of weeks - hopefully we will have better news then

Getting a better fit

Up at LOC again yesterday. Saeed had real problems putting the helmet on and made Finley really scream. Saeed spotted that the front of it was quite tight on Fin's forehead. He went away and made a load of adjustments and when he put it back on I could not believe how easily it went on and without tears from Fin.

Now all we have to do is wait for this scab to heal and then I'm hoping and praying we will be back on track. Hopefully by the weekend.

At the end of my tether

Its difficult to know what to do for the best but last night after resolving to but the helmet on regardless for a nights sleep it was looking worse than ever after bath and when all the cream had been washed away. Red raw. I'm begining to wonder whether this is worth it. I'm not convinced we are going to see much growth in Finley's head anyway as it is already big compared to the rest of his body. Anyway - we didnt put the hat on last night and this morning the lump had actually scabbed which really upset me.

I phoned LOC and spoke to Saeed and we are up there tomorrow at 2pm. Maybe we need a new helmet that fits better, or more adjustments to this one, or our money back because I'm starting to lose it a bit!

LOC 2nd Review - no change

We had our second review at LOC today. What a relief, Finley's head hasn't grown a mm with all measurements remaining static. With all the hatless time we have had, my worst nightmare was a growth spurt that made everything worse.

The lump on the side of his head is still there. Some days it seems better than others.

Saeed made another adjustment to the helmet today and says he is hoping that Finley should be sleeping in it by Monday.

After our controlled crying escapades he is back to sleeping through so I'm hoping that this will continue when we go to nightwear. He quite happily naps in it during the day.

Day wear only 'til Friday

I was expecting this blog to be updated once maybe twice a month with some news on Finley's progress - it seems to have become a daily saga and I'm getting really exhausted by it. I know we have to carry on but it's becoming very draining...

Fin had his helmet on 4 hours on and 1 hour off today, there was so much cream on it I didnt know what was going on. After bath when it was all clean and visible it was still lumpy and red. I phoned Saeed, he said he had another mother with the same issues, she persevered with day wear and no night wear and one day the lump just slowly began to subside. He says there is not much more he can scoop out of the helmet. Fin seemed quite happy in it today - it didnt really bother him and he napped in it twice - I'm not so sure about going the whole night with this lump so with Saeed's agreement we will do day wear while he still doesnt seem to be concerned about it but not night wear and discuss what we should do at our progress review on Friday.

We had a better night last night - controlled crying seemed to work after a shaky start. He appears to have gone to sleep very easily tonight. Peter is definitely off to work tomorrow so it has to be alright tonight.

Another cranio osteopath visit tomorrow, maybe she can do something for this lump with her healing hands.....

ANOTHER visit to LOC and more......

Finley's swollen area was still a bit pink this morning and still a raised lump. It looked like it was definitely on the mend. We got an appointment with Saeed at LOC at 10am. Saeed had trouble putting the helmet on as the lump was interfering with the fit. He scooped out a big part of the helmet where the lump is and said he could pack it up again once it had subsided. Finley wore the helmet all day but when I took it off again tonight the lump was back and very red. He has started another night without it - lump caked in Sudacrem. I suppose I will have to ring Saeed again tomorrow. It seems this lump is taking over our lives - I just want to get on with it now.

On top of this Finley has become so bad at sleeping. We've been giving him milk when he wakes but last night (another hatless night) he had a HUGE 4th meal just before bedtime. Weetabix, yoghurt and a banana. If he woke in the night it couldnt possibly be because he was hungry. Peter was fortunately here. We were on shifts. He did the night and then I took over about 5am allowing him to catch up on sleep. Finley was awake every hour until 3 then Jack was up and down until 6am woken a lot by Finley's blood curdling screams!! Peter amazingly didn't feed him - I think I may have cracked if it had been me. To prove a point when I finallly gave Fin a bottle at 7am he only drank half of it - clearly his interrupted sleep was not through hunger after all.

I think controlled crying, however much I detest it, can be the only answer. If we can get Fin to sleep through Jack will follow I am sure.

A hatless weekend to come

I spoke to Jo at LOC this morning and we have agreed to let the lump and redness get completely better before putting the hat back on. I think realisitically this could be Monday. I'm not too concerned as Finley's head growth seems to be quite slow. He was quite miserable in it yesterday and for the first time was putting his hand up to take it off several times so I think the sore must be bothering him. I think once the swelling has gone down and properly healed we should be ok. If not, then its back up to LOC next week I expect....

The bump is back again!

Another night looming without the helmet. I took the hat off earlier and the bump was back bulging and red. I think we need to keep it off until its properly healed. I dont really understand how it can be ok for a few days and be back as large as life after a few hours. Will have to ring LOC AGAIN tomorrow - I hope we dont have to go up there again. I'm already sick of the journey even though its only 3/4 hour. Could be worse, there are some people coming from abroad to get appointments so shouldnt feel so resentful.

Cranio Osteopath (C0) and LOC 1st review

A big day for Finley's head with two appointments.

We saw the CO today. A bit of a weird experience. I can't see it looked like she was doing much. She just seemed to be holding his body and then his head. When she first started I was going to ask her when she was going to get on with it! I know a lot of people say great things about osteopaths in general so I shall reserve judgement. It will be difficult to see whether this is effective or whether it is the helmet therapy but it could be both so we are going to continue for while. She wants to see us once a week for the first month. She reckons Fin has a lot of movement left in his skull which is good news. She says she may also be able to improve Fin's immune system which will hopefully help with his susceptability to cold viruses.

First review at LOC was very quick as we had been up there on Saturday. Things are moving in the right direction. There has been a half a percent decrease in the severity percentage but this has been brought about by only 1 mm. His head width measurement remains the same with a 1 mm increase from front to back. Here are the statistics:

Age months
12.5
Head Circumference (cm)
49.6
Percentile
95th
Head Width mm
153
Head Depth mm
146
Severity
104.79%

Saeed had a look inside the helmet. You can really see where it is holding his head and the foam at the back where we need the growth is not at all disturbed.

We are up at LOC again on 16th February for our 2nd review.

More sickness

For the record(!): Another night has begun without helmet wear. Finley didnt keep his dinner down and fell asleep at 5.30pm while I was putting his pyjamas on. Now fast asleep on his back nestling nicely on his flat spot.

I can't imagine for one moment there will be any improvement for his review on Wednesday I just hope we don't see any regression considering how little time he's been without his helmet due to sores or sickness....

LOC emergency adjustment

I phoned Saeed this morning and got an immediate appointment for helmet adjustment. I must say the service we have been getting from LOC has been outstanding. It never seems too much trouble and we've been able to get to see Saeed at very short notice without a problem.

Saeed put red lipstick on Finley's bump and then fitted the helmet on. He could then see exactly where he needed to shave out some foam from inside the helmet. He also drilled some ventilation holes in the back. We have to leave the hat off until tomorrow and then start 4 hours on 1 hour off with overnight. Just to let the bump's redness calm down and heal properly.

Its been lovely to have Fin's head back for a short while, I keep kissing and stroking it!

The bump is back

Finley's hat was on all night again last night. No real problems but today he really hasnt been well: coughing all day and has not been able to hold solids down since lunchtime when it came up all over him, the kitchen floor, the hall and the bathroom! Took hat off this evening and the bump is back over his right ear and was looking pretty red. Had pretty much decided to leave it off tonight due to coughing but after his bath the skin on his bump had broken which confirmed our decision. May very well be up at LOC tomorrow for an emergency adjustment.

This is quite frustrating - I just want to get on with it now.

First overnight and trips out today

Finley slept through last night apart from a bit of a blip at 10.30pm which lasted about 15 mintues. This is quite rare for him but not unheard of. Would've been tempted to blame the helmet but we are trying not to. He woke at 5.15am but then not til 7.45!! The lump had gone right down when I took his helmet off so I'm a bit more relaxed about that as well now. He's up to 22 hours out of 24 with 2 seperate 1 hour breaks. This is what it's going to be like for the next 6 months or more...

We went to a softplay area with Jane and Sonny this morning. A lot of children were tapping his hat and one girl tried to take it off! I came back from the toilet and there was a whole crowd of children round him asking Jane questions. She said it was to protect his head. Peter thinks we should say he is able to communicate with aliens with his hat on!

I think he is going to get quite a lot of attention.

I'm so pleased he seems to have adjusted so well. His character hasn't changed at all. He is still the happy, smiley little fella he's always been.