Chanel Murrish Hlhs

I posted a week ago that Chanel received botox in her hand and leg to help open her left thumb up and put her left foot flat - something she has never been able to do due to her left sided stroke and cerebral palsy (she wears a left foot/leg splint and has a second skin).
We could see the results quickly in her hand but as her foot and leg is a lot more serve it took a few days to see any affects there. After a few days she could get a lot more range in her ankle and although... not perfect could almost put her foot flat. But as she has never been able to do it before her hip was struggling to walk in the new position...
(She still cant move her thumb, ankle/foot or move any of her left toes at all).
Now this weekend she has been having a lot of pain in both her arm and leg. She has swelling in the back of her left calf at the injection sites and has been trying to hop around on one leg or asking for me to pick her up at times as unable to walk at all.
I am going to ring for some advice tomorrow but I thought I would try a see if anyone on here has any experience with this type of botox?
❤️
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Chanel’s off down to theatre for botox in her left hand and foot this morning.
As she is at our local hospital aswell as not been allowed to have a general anaesthetic here, they aren’t allowed to give her any type of sedation at all because they are not experienced in her heart condition. So with just a little numbing cream she has to be super brave...
...by the smile you can see she is definitely brave ❤️
... (She was shouting pretend it’s a rollercoaster, faster, faster 🙈😂😍)
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In just over two weeks time Chanel and her brothers Chase and Cole will be taking part in the CHUF Toddle at Close House for another year.
If you would like to sponsor them every penny is greatly appreciated and goes to the Children Heart Unit Fund who provide so much for children affected by congenital heart defects. Most importantly life saving equipment!
To donate please click on the link below: www.justgiving.com/ChanelsCause?utm_id=12 4

Over 5000 followers! Hopefully 5000 more people helping us spread awareness into Congenital Heart Defects ❤️Over 5000 followers! Hopefully 5000 more people helping us spread awareness into Congenital Heart Defects ❤️

One year ago Chanel became the youngest person to be honoured with the Chairman’s Medal. What a wonderful afternoon we had too ❤️

Love how many Heart families follow Chanel’s journey too ❤️

Chanel had her cardiac clinic today... 6 months seems to come around so quickly! I never seem to sleep much before and pulling up to the hospital grounds my stomach churns from all the awful memories but once I get over that and we see the staff it feels like home from home again.
I think for the first time ever there was nothing to report and I had no questions or worries so it was a mot and a catch up. Her heart function isnt great but it hasn’t got worse. All in all she i...s doing well!
I think its hard now she is post Fontan (4th open heart) as there has always been a next step, a next surgery. Now we are back in the unknown again...
I think the older she gets the more I feel she is invincible but then I start worrying that it’s because we are getting too used to living more ‘normal’ and question if im living in a false sense of security trying to push away how serve her condition is.
I imagine most parents in similar situations battle with this in their head... The worry for whats next because we all just want someone to tell us there is a magical cure coming that can fix our babys. Whilst also knowing we need to live in the moment because things can always change so quickly. Then forcing ourselves to snap out of thinking too much and remember how lucky we are because too many parents we have met aren’t.
Back to clinic in another 6 month - with more happy news! Next clinic her consultant can now sign her fit to fly to America. Something she has been too poorly to do before Fontan. It’s been her biggest wish ever to go to Disney World and I cant wait to now be able to make it come true 💫
PS. I tried to get I nice photo today but this was as good as Chanel was willing to do lol ❤️
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Iv never shared this publicly, actually a lot of it not at all and I don’t know why I am now apart from when I have times were my thoughts go into overdrive iv always found it helps me when I write...
My two boys are older than Chanel and before each of their pregnancies I had two miscarriages before them both. You have to have three consecutive miscarriages for there to be medical investigation into why and although I lost four, I had two miscarriages then a baby then two mi...scarriages then a baby so I never got to find out why. Probably never will. After that my husband wanted to wait for another baby but I was adamant I wanted another and now. Id came to believe maybe I couldn’t carry girls or maybe my body miscarried twice before it got strong enough to carry full term? Neither had evidence to be true but its funny what your mind comes up with when needing to know why. Around my youngest sons first birthday I found out I was pregnant again. Obviously knowing my history with pregnancies I was terrified the whole way, thinking I was going to loose my baby constantly. When I was 16 weeks I decided to do an early pregnancy scan so the boys could be in with us too and half to calm my anxieties at the same time. We went to a Babybond in Newcastle. I remember it so well. We found out she was a girl and I was ecstatic, then to top it everything looked well and healthy. But even after being assured I got home that night and said to my husband I knew something still wasn’t right, something in my gut was telling me and although the wellbeing scan was meant to set my mind at ease, it really didn’t. We then found out about Chanel’s heart a few weeks later at my routine 20 week scan. I know this might sound crazy but im convinced even before she was conceived I was destined to have her. Chanel! Utterly and completely her and everything about her. From knowing I didn’t want to wait, not miscarrying before her, her being a girl, my gut feelings. I feel like I was always meant to have her beside me. My princess ❤️.
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Thought id share Chanel’s recent school photo. Although she doesn’t manage as long as she would like - Chanel is so sociable and absolutely loves school! When she was a baby I never dared think about the ‘normal’ things in life like this. She blows me away and I truy believe she can achieve anything ❤️.

Our beautiful friend and heart mummy Gemma has released a children’s book on Congenital Heart Defects. How amazing! Follow her page The Abilities In Me Children’s Book Series to find out more or click on the link below to purchase on Amazon ❤️

Last weeks Best Of Wearside Awards at the Stadium of Light ❤️. Thank you to whoever nominated Chanel for the Child Of Achievement Award. Now she is that little bit older she really enjoyed the whole evening listening to so many inspirational stories and she was so happy when they called her to the stage announcing she had won! Although all 3 of the children in her category were so deserving ⭐️. Thank you Sunderland Echo and the lovely Anna who presented her award on behalf of sponsor Northern.

Happy Mother’s Day to all the amazing mummy’s today 💕

Last night Chanel won another Best Of Wearside Award, this time in the Child Of Achievement category but it was a big night for the Freeman Hospitals life saving work and supporters as our amazing friends Emma & Sergio Red Sky Ball picked up the Fundraisers Of The Year Award and their daughter and Chanel’s beautiful heart friend also took home a Child Of Courage Award #TeamCHUF ❤️

Chanel was nominated and shortlisted for tonights Best Of Wearside Awards for the Child Of Achievement category along with another two amazing children. Im over the moon to say we have had a fantastic night and... she won! But the whole room was full of inspiring people ❤️
https://www.sunderlandecho.com/…/reveal ed-the-best-of-wears…