we are on day 8 of wearing the helmet and all i can say is wow. I honestly never thought we would see progress this early. I took Evies helmet off an hour ago to wipe her head down and clean the helmet, and thought I would grab a few pictures whilst its off and compare them to the pictures before she started...

Photo on the left is the recent one, one on the right was taken just before the helmet treatment




Her forehead is evening out nicely too, its so hard to get a photo of her keeping still so this is slightly blurry, but you should be able to see the progress!

Day 1 went really well. EJ done perfectly having the helmet on 1 hour at a time. She didnt seem bothered by it at all. Even falling asleep in it a couple of times!

We took her to out to get some food at one point, had a few stares and even one person who thought it was 'a good idea'...im guessing she thought we put it on her to stop her banging her head on the shopping trolley or something! LOL!


On the whole she seemed happy wearing it! Here is a photo..




Day 2 isnt going to bad either. Today shes had it on for 2 hours...more like 2 and a half hours as she fell asleep with it on. Her head was very sweaty which they did warn us would happen, so we need to keep her fluids up.

Its been such a busy day today. But we finally got EJ's helmet!

To start with, she has to have a starlight bivalve helmet, this is different to 'normal' plagio helmets as she has an abnormally long head with open sutures...which is VERY rare. The helmet she has to wear doesnt have the typical hole at the top, its completely closed, and fastens from the back, opens in the middle.

Here is a photo of an exact model of what her head will look like after treatment, the yellow parts are the model of her head and the white parts are of the adjustments the helmet will make.







The small skull model is her current head shape, notice the longness? the large model is what her head will be like after treatment. A huge difference!




And here are photos of her in her helmet before they adjusted it, so please excuse the way her eye looks squashed hehe :)








She didnt seem to mind having it on at all, but that might change after shes worn it for a few hours.

Day 1 (which wil be tomorrow as we didnt get home until 5pm) she has to wear it 1 hour on and 1 hour off...doesnt wear it at bedtime

Day 2 is 2 hours on 1 hours off....doesnt wear it at bedtime

Day 3 4 hours on 1 hour off, wear it at bedtime

day 4 is 8 hours on 1 hour off, wearing it at bedtime

day 5 is 23 hours on 1 hour off. They advised to spend the 1 hour off in 2 parts, so 30 minutes in the morning and 30 minutes before bed.


We go back on Wednesday next week to check how shes getting on and to make sure there are no problems with the helmet! We also have to pay our second instalment.



We also want to say a huge thank you to everyone that has helped raise money for evies treatment, it means alot :) Although EJ cant thank anyone, im sure as she gets older she will be so grateful to hear how people were so generous in helping her get a normal head shape!

Friday we took Evie-Jo to be re-measured for her Helmet after getting the X-ray results. She will be fitted with her new Helmet in 2 weeks on the 1st May.

Also good news as now looks like she can have one of the patterned Helmets instead of the horrid full clear one. Also they think it will only take about 3 or 4 months in the Helmet to correct the problem, which is great news!

Just recieved this email from the clinic.

Hi Katy

The fax says ‘ There are no visible abnormalities of the sutures’

Which is great ,so we can see you on Friday?

Call you later

Chrissie

The clinic have had enough of waiting for the xray results done on the nhs so have kindly been chasing it up for us. Seens as i was having no luck. I just recieved this email from them..

Hello Katy



I’ve just spoken to Lorna Mr Oso secretary and the report is on his desk. He will see it at lunchtime today and they will fax it to us then.



If all is well we can see you this week, either Wednesday or Friday?



Regards





Chrissie

So fingers crossed we should have the results in a few hours!

We are still waiting for the xray results. I gave my doctor a call yesterday to see if he had the results before i did. but he didnt. so hes decided to help me on the 'fun' of chasing up the hospital. turns out the consultant EJ saw on the 18th March was only a locum, so the results would have to go, not only through him, but a proper paediatric consultant. Needless to say, my doctor had no more luck then I've been getting. So he said to give him a call back on Monday and he would keep trying.

I am SO annoyed right now. The clinic in cardiff just called and want us to go for another helmet scan on thursday morning, as rachel (the lady dealing with it) is on holiday next week and part of the week after, they asked me to phone the hospital to chase up these results.

So i just called the hospital and asked about the results, and got told 'its too soon to have any results, its only been 1 week' by the consultants receptionist...when i explained the consultant said he would phone the results through to me she replied with 'i doubt that because I do all his work for him and i never do it by phone'


Seriously...HOW LONG DOES IT TAKE TO LOOK AT A FEW XRAY PICTURES?

They arent looking for a needle in a haystack. they are looking to see if a 'crack' is present from the soft spot to the back of the head....like 3 seconds of work.


ARGHHHHH