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Category: Gastro

Hardest by far

February 16, 2018February 16, 20184 Comments

When you've reach a breaking point it seems that all hope is lost, you've failed. The worst part, it's not you that you've failed, it's your precious daughter. Since being born it has been a monumental daily effort to hydrate our sweet girl. No suckle reflex meant months of licking the teat and feeds lasting … Continue reading Hardest by far

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We purchased the most amazing commercial grade blender this week, a @vitamixuk This will allow us to supplement all oral meals Violet has with a blended diet through her tube. Tonight Violet had a small oral meal which I was able to top up with a tube feed. This will give Violet the extra calories she needs from burning so much energy. Our first meal through the blender was home cooked toad in the hole with mashed potatoes, carrots, peas and gravy. The purée was silky smooth, very impressed! #blendeddietfortubies #tubie #vitamix #cpwarriorprincess #dystonia #dyskinesia #gdd #quadriplegic #chromocutie #15q133microduplicationwontstopher #multifocalepilepsy #esesepilepsy #cswsepilepsy

Violets face says it all #fireflybyleckey #upsee #cpwarriorprincess @fireflybyleckey

Violets first time in her new @fireflybyleckey Upsee. Huge smiles, absolutely loved stepping independently and was thrilled to explore the garden and house independently without a bulky walker. #fireflybyleckey #upsee

Yesterday we had our long awaited “urgent” review with the wheelchair service. They could see immediately the Ormesa Bug was no longer suitable. We have been booked into the specialist clinic on the 1st August to be measured up for a newer and more supportive model. The OT is suggesting the Zitzi Delfi Pro. It’s a seat very similar to Violets Xpanda and has the ability to move backward for extensions, it also has a great recline function for seizure recovery/napping. There are 3 or 4 different bases to choose from, some wheelchair and some buggy. We’ll try a few out and see which is the best for us. I asked about a powered chair in the future and they can only fund one for V once she has been a year seizure free 💔 In the meantime they fixed a wheel which was nearly off, a stuck brake, replaced some screws which had come out and gave V a new harness and ankle huggers.

Today marks a year since Violet had her GTube surgery. What a life changing operation that was ⭐️ Having the ability to feed Violet overnight and via a pump is incredible. We also do bolus feeds via Violets button but she gets the majority of her calories and fluid overnight. The NG tube saved Vs life but it wasn’t a long term solution like this is. The tape on her face would leave her so sore and she hated it down her nose and throat. The last year has brought so many changes, this was one of the best 💕

This weekend has been the toughest for a while. Violet is suffering so much with the weaning of the steroids. We’ve had frequent seizures, loss of appetite, reflux, sleep issues and extreme distress. She’s a little superstar, we see fleeting glimpses of our Violet amongst the heartbreaking episodes. It’s soul destroying and mentally exhausting. Still no long term plan in place to treat the ESES. For now the focus is to get V weaned off the steroids first. After a conversation with Violets movement consultant it’s been decided she needs a new medication added in. Violets Dystonia is worsening and increases to current meds have done nothing. So a review is being booked in to get this sorted out. A bit of fab news is that Violets new seating system for at home, the Triton Dynamix, has been approved for LA funding and is being ordered today 🙌🏻

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