I was recently asked what my favourite blog post was. To be honest I really struggled to answer. To me, a favourite suggests something happy or at least upbeat. A lot of my better writing is not so happy. A lot of my happier times do not have much writing, they are more photos. So how do you choose a favourite?
In the end I chose the post that marked the end of my daughter’s nightmare journey. In truth, it’s not the end, because there will never be an end, but it had been a real tough time and when I wrote that post everything looked rosie.
When you have children you expect ups and downs, maybe even the odd hospital trip. The other two little ones have been to hospital too. Boo collapsed with a febrile convulsion when she was two years old, that was really scary, I thought she had stopped breathing. The Little Man had a very nasty fall, again at two years, and he hit his head causing a concussion. Even with the older kids hospital trips had been on the menu. So it was nothing new taking my daughter to hospital with poorly neck. What was new was how long it took them to fix it.
A year ago we were in hospital. Star had already had a manipulation in theatre and the halo returned. Then it was time for her fusion. She went down to theatre in the morning for a three hour operation. We didn’t see her again until over six hours later.
Those were the longest six hours of my life.
They took a bone graft from her skull. They opened up the back of her neck and fused the occipital bone to the C1 and the C1 to the C2. They used the bone from her skull and plates and pins made from titanium.
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| from etsy |
We met her in recovery and once back on the ward we let everyone know..
“she’s back, she’s ok, it worked!”
We didn’t say
There were complications, she lost a lot of blood, we could have lost her.
We couldn’t think of these things. The consultant told us but we let it go over our heads. We couldn’t worry about that now, she was with us, she was alive, she was ok.
The next couple of days were tough and emotional, but Star bounced back eventually.
Just one more operation to go, six weeks later she had the halo removed.
That’s when I wrote my favourite post.
I couldn’t let the anniversary of her operation go unnoted. It was huge for us, life changing for Star.
A lot has happened in the last year. Star has lost a lot of her hair, but most of it has grown back again. She has eight small scars and two big scars on her head. four of the small scars are on her forehead.
She went back to school, part time first, then full time. She has already received a certificate for completing a half term of school with 100% attendance.
Last month we received a diagnosis from the hospital for her of Elhers Danlos Sydnrome, Hypermobility type.
On top of everything, Star has high functioning autism and her behaviour can be quite challenging at times.
No matter what, she will always be my Star, my shining Star!
Raisie Bay has reached the finals of the MAD Blog Awards, I’m so thrilled. It would be lovely if you could take a minute to vote.
That must have been a very scary experience for you – I'm glad that Star came out of it okay, and has been progressing so well in the last year. #PoCoLo
Yes, it was scary, and thank you we take one day at a time but we already know that Star is a little fighter x
oh wow I read this as i came fromyour comment on Actually mummys blog I read, I nodded as we too have sent our baby down for four hours worth of surgery for it to take much longer as she stopped breathing, had an asthma attck a;ll whilst they worked on her dislocated hip. The then EDS 111 stuck and I gulped. We are here too, Not yet diagnosed with EDS but with HMS but EDS is more likely (one and the same and all that) eughhh
Oh Emma, any operation is scary enough, but when it takes so much longer it's terrifying isn't it. Thankfully my girl is copping well, we take one day at a time. It's taken us 6 years to get an EDS diagnosis though. xx
It's the most soul-destroying feeling when you realise your child has a serious health condition. People compliment me on being brave, and tireless, but it's just what you do, isn't it? As a parent you can't stop doing the very best you can for your child – it's just not thinkable. I can't imagine the anxiety of a long operation for your child. Thanks for coming to visit my post too x
It must’ve been quite a harrowing experience for you, but it’s great that you opted to look at the brighter side of things, rather than fixate on the worrisome parts. Also, it's a relief that the medical care and supervision was on point and dealt with things to the utmost of their ability. Anyway, I hope that you guys are doing well these days. Good day!
Paul Quinn @ MedCare Pediatric