Before and After Photographs

We took some photos of Ben's final head shape and emailed them to LOC who put them together with the photos they took before treatment.  The difference is amazing - especially the aerial shot - can see such a change in shape there.  Not just the head shape thats altered too...how much older does he look and how much hair has grown!!

Ending treatment

We took Ben to Birmingham Childrens Hospital the other day to see the Craniofacial surgeons.  We were wanted to check that the asymmetry hadn't affected the formation of his jaw etc...

We saw the Registrar and then were asked to go through into a room of 10 people!!  We didn't realise we were walking into a multi-disciplinary team meeting!  Good job Daddy (ortho surgeon) was there!!

They talked technical to Daddy so Mummy just listened but basically they told us that we had to now take the helmet off.  The reasons being that, it is pushing his left cheekbone in and starting to cause more asymmetry problems around the eye and also that it was creating red pressure marks all across the bottom of his skull and we now need to let that grow out naturally.

They measured Bens head three times and they got measurements of between 3 and 5mm each time and we are satisfied that the helmet has reached the end of its usefulness in terms of correcting the shape.

We asked if the plagio could return and it is one of those questions that can't really be answered.  It is unlikely that it will but we have gone back to vigorous repositioning.  However Ben spends much less time lying down now he is older so the risk isn't as high.

We will return to the hospital in 6 months time to re-evaluate the cheek bone situation and to look at the overall shape of his head.

So Ben has been enjoying feeling fresh air on his head and the red marks have all reduced quite considerably already. We had to go and do a spot of sunhat buying though!!

3mm in 3 weeks!

We popped off down to the LOC clinic today with our special guest...our friend Aunty Anna!! We went via Tewkesbury so we could have lunch and actually managed to avoid being out in most of the rain!!

Ben soon made himself at home in the waiting room sitting on Aunty Anna's knee to have his dinner...on the menu today was chickpea lasagne and rice pudding and...we managed not to cover Aunty Anna in food!  Ben said hello to another fellow helmet wearer and then it was time for us to go through.

Ben and Anna in the waiting room (not covered in Ben's dinner)

He started off well with the measuring and was quite happy but then some measurements needed checking and Ben was none too happy, even less happy when we popped him in a bumbo (chunky thighs - they get wedged!).  Measurements were finally complete and he has dropped another 3mm!!!!!!!!! So now we are down to 18mm to go!

Rachel did some more adjustments to the helmet - letting his forehead out so that it can continue to even up and she gave him some more space at the sides as he was starting to get bumps above his ears.  This really is the best time for Ben to be in his helmet as he is growing so much and it is very helpful that he continues to sit at the 98th centile.  Keep growing Benji!

Back down to Ross at the start of June!

Go Ben!! 5mm this month!

Bit of a soggy journey and then walk to the clinic in Ross on Wye but Ben was nice and dry in his buggy!  After entertaining the receptionist in the waiting room we went in to see Rachel and Ben DIDN'T cry this time when he had the stocking put on his head.  He did get a bit irritated with the callipers but once he had stopped bouncing like Tigger Rachel was able to get the measurements and.....another 5mm reduction in his asymmetry!!!  Wow!! Thats 11mm done, 21 to go! 1/3 of the way there!  Rachel altered the helmet quite a bit as the side was digging into his cheek and she has given him more room to grow on his forehand (on the side that we want to grow out!!) which is good.

We can really see the difference in his head and the alignment of his facial features looks much better so even if his growth slows down we are pleased!

Rachel said whatever we are feeding him keep going as we need him to keep growing into the helmet and stick at the 98th centile!

Bens new trick now when his helmet comes off for cleaning is to rub and shake his head around!  Think he likes the freedom and his head itches a bit.  He likes to have a cuddle whilst you rub his head or give his hair a brush.

His hair is getting so long now and he sports a mohican look when his helmet comes off where it has stuck through the hole in the top!  He has a small bald patch on the back of his head where the helmet has a holding point but hopefully that will sort itself out when he gets discharged and is helmet-less!  Small price to pay for a beautiful shaped head though!

Back in Ross in 3 weeks...keep growing Ben! More miracle grow must be purchased!

So much easier now I can sit!

Ben is still doing really well with his helmet and really doesn't notice whether he has/hasn't got it on.  So easy to put it on now particularly as Ben has mastered the art of sitting now!  No more odd positions trying to prop him up or hold him in a sitting position with my legs whilst playing catch the head!  Would have used the bumbo but mr chubby legs gets wedged in it!  Now he just sits there patiently and takes it all in his stride!

 Ready...

 Steady...

Go!!

Yey! Another 4mm...but I hate wearing that stocking!

Another trip down to Ross on Wye today.  Ben has done very well and improved another 4mm!  Thats 6mm in total or 19% of the improvement complete!  The back of his head is losing the flat angle on the right hand side and his eyes look better already as they were slightly misaligned and gave the illusion they were different sizes and shapes.  Rachel said that once the back of his head is sorted she will start adjusting the helmet to improve his forehead, it can't all be done at once as due to the severity the band would have too much adjustment in it and might spin.

Ben was none too impressed at having his head measured again and screamed at Rachel!  He also wasn't very impressed with wearing the stocking on his head (as seen in the photo below - he also wasn't impressed at this photo being taken!!).

Back in Ross in 4 weeks time now.  Rachel put some more adjustment into the helmet so it should last us 4 weeks!  Well Done Ben!!

The twins discover the helmet

Ben visited his twinnie friends Daisy May and Noah today and they were intrigued by the thing that he had on his head that they didn't!!  Noah liked touching it and Daisy May was fascinated by the hole in the top and spent quite a while stroking Bens hair that was sticking out through it!!

Jazzing it up!

"Mummy, what have you done to me?  This is my not impressed but I'm humouring you face"

We are on the look out for a shark fin next or other types of animal ears!

2mm in a week!

Ben had his appointment in Ross today with Rachel.  He had to have the measurements taken again of his head which meant he had to wear the dreaded stocking...which resulted in the inevitable screams as he looked like a teletubbie!  His plagiocephaly has reduced by 2mm which is fab in a week!  We have 30mm left to go now!  His cranial index has increased to 78% meaning that the back of his head is flattening out a bit and getting wider which is again what we want!  It would appear Ben is having a growth spurt again and if he is it is great timing as his head will grow into the spaces in the helmet the way we want it to!  He has moved from 91st centile to 95th so something is definitely happening!

Ben in Ledbury en route to Ross!

Chilling out in the sun by the River in Ross.  Ben was very happy with himself that he had done 2mm already!

Ben did his first night in his helmet!

Ben did his first night in his helmet last night.  We were worried how he would react but he seemed to not notice he had the helmet on and followed his normal sleeping pattern!  We were very impressed!  He is now starting to look strange when he doesnt have the helmet on so we must be all getting used to it!

Sneaky photo of Ben flat out!

Four hours on!

Ben has done well with his helmet today!  He has done 4 hours on, 1 hour off repeated and has officially been able to nap.  He also has to start doing overnight so we will see how that goes! Helmet still seems to be catching his right ear a tiny bit so will have to ask Rachel if it needs trimming on Wed (the helmet not his ear!!).  Tried adjusting the helmet once on but it doesnt seem to want to move and just sits naturally where it is.  Helmet moves a bit when its on and I think Ben finds that a bit strange as he holds himself really stiff at first but after about 30 mins he forgets all about it.

Went for a long walk this morning and Ben went forward facing in his buggy for the first time.  He loved it and looked a bit like a racing car driver in his helmet!

Is my helmet a drum???  My spoon makes a noise on it!

2 hours on .... and sleep

Today was 2 hours on 1 hour off and Ben did very well.  Helmet went on quite well and Ben was happier with it.  It fact he fell asleep each of the 3 times it was on.  They have said no napping in it yet but he fell asleep himself after it had been on a while so he must be comfortable in it!

zzzzzzzz

So zzzzzzz again whilst Mummy tackled the big hill! How much does that helmet weigh or am I just unfit!?!

Tomorrow is 4 hours on, 1 hour off.  Officially we can nap in it and he will sleep overnight in it!

Day One....was a bit crazy

Ben wore his helmet for the first time on Thursday.  He had to wear it for one hour on/one hour off all day.  Wasn't allowed to sleep in it at all yet so was interesting with naps!  First attempt at getting it on him failed as it didnt go on right and was on his ears and then we couldnt get it to adjust....nightmare and by this time Ben was screaming and had got himself hot and bothered so we let him have a nap.  You have to use both hands to prise the helmet open to put on him, this will be easier when he can sit unaided but at the moment its hard to prop him and leave enough clearance at the back of the head to get the helmet on!  Factor into that baby looking this way and that and its a game of catch the head! Next attempt I popped him in his bumbo and managed to get it on after a bit of faffing and then swiftly popped him in his car seat and went off out to stop the screaming!  Its the ears that are the problem, it catches on them and even folds them over quite easily and then its hard to adjust without taking it off!  

We met Auntie Kirstie and Noah for a bit and he was flashing the smiles not his bottom lip by then which was good.  

Calm at last!

We got a few questions from people who wanted to know what it was for...think Ben felt like a minor celebrity!  Then it was time to take the helmet off which went ok, just gets a bit stuck on the back of his head.  It had left a big red mark on the part of his forehead that sticks out more but thats because it is a holding point for the helmet.  However after an hour the mark had almost gone and we were able to put the helmet back on.  Been smearing lots of vaseline on that area so that the helmet doesnt rub and break the skin.

 Now you see it!

Now you don't but I've got a sweaty head!!  Red mark is not happening as much though!

We met Auntie Anna then for a bit (more flashing of smiles from Ben) and she helped us get the helmet on and off and Ben then had nap time whilst we walked around the lake at Barton Marina.  All in all Ben had the helmet on for four hours which is the normal time they expect you to manage.

Lots of shampoo used on smelly sweaty hair at bath time and then I had to clean the helmet with alcohol solution.

Haha just realised I have only taken pictures of him smiling...should have got some screaming ones to show him when he's older!!

We have the helmet!

Drove down to Ross on Wye today to get Bens helmet fitted! Its very smart and I've attached some pictures of it.  Ben tried it on to check the fit and then Rachel adjusted it slightly to improve his vision on the left side.  Apart from that it fitted perfectly and Ben seemed quite happy sitting there wearing it.  He had some photographs taken of his head shape so that they can be compared at the end of the treatment.  Ben found this all very amusing sat there in the bumbo having his picture taken and was a little confused when he got lifted down to the ground in the bumbo so Rachel could get an aerial shot - think he thought he was flying! Then Mummy had a go at putting on and taking off the helmet and that was when the screaming began...whoops!  So we start wearing it tomorrow, 1 hour on and 1 hour off all day apart from nap time and night time! Time will build up gradually over the next few days to allow him to adjust to it and then on Monday we go full time - 23 hours a day!

Helmet Day tomorrow!

Don't think Ben realises how exciting tomorrow is and how cool he is going to look in his new fish helmet!

Scan picture just arrived!

Bens scan photo arrived today from LOC.  We get the helmet next Wednesday and hopefully we can start to even up this head shape for him!

Getting the scan done!

We have been down to the LOC clinic in Ross on Wye today to get Ben scanned for his helmet.  His plagiocephaly is measured at 32mm which is severe so its good that we have caught it so young and he is at the best age (5 months) to get started! Ben had to wear a stocking over his head and a transmitter was attached to the top (I think he looked like a teletubbie!) and then Rachel scanned every side of his head.  Ben was none too pleased about the situation and screamed very loudly but after being bribed with milk he sat still enough so that Rachel could get the scans she needed.  In the end he was quite interested in seeing the 3D image of his head appear on the screen! We chose a very cool blue fish design for the helmet which I think will look very smart!  Back down to Ross in 2 weeks time for the helmet fitting!