Our Journey with Brachycephaly.

It’s a very strange time !! Oh I’ve not noticed anything with DSs hair apart from a slight cows lick at the front where it seems to always go over the top of the helmet ! Pineapple head we call it !! I’m sure Enzos will grow back in a few weeks !

Awww that’s amazing I’m glad he had a lovely day with family !

 

Update from today’s appointment ! He is now 90% down for 97% and 1% asymmetry from 4%!

We was going to finish today but decided as there has been improvement to go another 6 weeks to 30 Jan and then we will fully finish treatment ! I am sooo happy !!

The silver pic is a scan of his head from his first appointment in June and the gold one is today’s! Soon as the specialist took his helmet off she said wow you can defiantly see the roundness ! So my eyes wasn’t tricking me! It’s a totally different head shape !!

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I am actually amazed that he has gone from severe to on the edge of mild ( he only needs to shift 1 1/2% to be in mild) in just 25 weeks of having the helmet .

Mild is where I hoped in my heart he would be and my aim for him and knowing he’s closer to it . I know it’s only a chart and seeing visually is more important though. I do think any further improvement over the next six weeks would be a bonus ! So fingers crossed for bonus improvement he deserves it after being such a trooper !

 

Thanks lovely !

Just can’t believe it he’s gonna be fine not that he wasn’t anyway but you know what I mean. it’s such a relief!

How are you and Enzo ? Xx

 

We have a cracked helmet ! Such a good job we are near the end of treatment otherwise I would be asking for a replacement ! Kinda annoyed though as it shouldn’t break !

He fell and knocked his head on DDs bunk beds, must have hit a soft spot on the helmet at the top and it completely cracked and a few pieces fell off !! I managed to do a bit of DIY on it ! Thankfully it was only the outer shell !

I just hope it lasts 4 weeks to go !!

 

Oh gosh it could have been so much worse without it on ! Going to be lots of bumps and bangs when he’s got it off !

 

I know I’m still annoyed by it to be honest ! I’ve had to just use black tape to cover the top ! I will post a pic actually ! There’s also a hairline crack but I managed to glue that over that’s why it’s shiny ! Thankfully his hair always comes over the top of the helmet and anyhow it’s back to lockdown !
How are you all getting on ?! 3 weeks and counting for us !

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I know we have 2 weeks 2 days to go otherwise I would have complained for sure !!

awww he’s adorable look at his long hair !! I feel like I’ve watched him grow up with all the pictures ! He looks so happy and amazing !!

Glad your all doing so well !! My DD1 is so excited for his helmet to come off she keeps asking me everyday how many more days ! It’s going to be weird adjusting to life without it and the many bumps he’s going to get !

 

I feel like that with J too . Maybe it’s because they are our third child? Time for sure needs to slow down a little haha!
Thanks I will post our final update ! Cannot believe I am even writing that ! 2 weeks today eeek !!