Category: Gastro

Hardest by far

February 16, 2018February 16, 2018 ~ Rainmakestheflowersgrow ~ 4 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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Sharing with you a video which shows a snippet of our outfit choosing this morning 💞 You will see that Violet looks at each item and then focuses on the one she wants and vocalises her choice too. She very clear with her choice making 🥰

Since starting her new epilepsy medication last week, Violet has had an increase in seizures. These are seizures during the day, both absences and focal seizures. We can only guess her constant ESES seizures at night are still occurring. We have no way to know if there has been any change yet. Violets medical team are aware and we are awaiting their decision on what to do. Whether we stick with it and see if they settle or maybe try something else? We will hopefully get the next EEG date through in the next couple of days. We are carrying on as normal although it feels anything but. Having this hanging over us like a storm cloud is exhausting. We are kitting both Violet and Henry out in outdoor adventuring clothing and bits for this year. We have big plans to give them new experiences and to make some amazing memories. #cpwarriorprincess #thoughshebebutlittlesheisfierce #beautifullydifferent #epilepsyawareness #smallbutmighty #esesepilepsy

💜💚CP Awareness Month💚💜 1 in 4 children with cerebral palsy will have seizures. Violet not only has CP but a chromosome disorder which also raised the risk of Epilepsy. Now diagnosed with a rare form of Epilepsy, Violet has been having seizures since she was a year old that we are aware of. Seizures can be subtle or very obvious. There are many types and many presentations. #cpwarriorprincess #cerebralpalsyawarenessmonth #cerebralpalsy #epilepsyawareness #thoughshebebutlittlesheisfierce #beautifullydifferent #esesepilepsy #cswsepilepsy

When life seems too much, focus on what’s important. This weekend has been all about quality time as a family and for myself and my husband as a couple. We never want to dwell on bad news and try to move forward. However I’ve really struggled with Violets epilepsy syndrome. It frightens me. I want to learn everything I can about it but there isn’t a huge amount of information at my fingertips. I look forward to sitting down with a specialist in May to discuss it at length.

Look at this clever girl in her walker 🥰 Violet swam a whole length of the hydrotherapy pool in her neck float today, all unaided and self propelled! She is amazing! We ordered our WAV today! 6 weeks or less until it arrives ❤️

Since the bombshell on Tuesday I have been researching like a mad woman. ESES - Electrical status epilepticus in short-wave sleep is also known as CSWS - continuous spike and wave in sleep and can also be known as LKS - Landau Kleffner Syndrome. Confused? I was! The long and short of it is, this type of epilepsy is very rare and is classed as severe. Early treatment can help prevent the impact this type of epilepsy has with cognitive function. I know that Violets epilepsy has been evolving over the last 2 years and that this may be the underlying reason why. A lot of unknowns, a lot of scary possibilities and a lot of hope being held that the medication will stop these seizures. This has been a huge shock and we are taking our time to digest all the available information - there isn’t a lot as it’s so rare. Thank you for all your kind messages and comments. I have read them all and I’m sorry I haven’t replied to you yet. #thoughshebebutlittlesheisfierce #beautifullydifferent #cpwarriorprincess #epilepsyawareness #eseswarriorprincess #esesepilepsy #epilepsywarriorprincess #morethanadiagnosis #chromocutie #15q133microduplicationwontstopher #dystonia #dyskinesia

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