By @enablingevie, Sep 6 2012 09:54AM
Hi friends- its been a super busy couple of weeks but have managed to muster some energy to update you all on the latest news. So my mummy managed to get an appointment with the gastroenterologist at GOSH to talk about some of her and dad's concerns with my feeding tube. He was a very nice man and he explained each of the next steps to mum about finding out what is happening with my tummy and why it isn't working as well as it should be. Lots more visits and investigations at the hospital but hopefully we can find a way that means mum and dad don't have to draw bile out from my tummy anymore and it can get rid of it for itself. My site where the tube goes in my tummy has been very angry and sore and the nurses found strep b so we have had to treat it with some special cream. Thankfully it was caught in time and the infection is clearing up well. I have had a couple of appointments with a private neuro physio as well. The sessions are really hard work and make me soooo tired. I can't do much more than cry through it. She has told us lots of things to help my mum and dad to understand why physio is so important. The words dystonia and retained atnr with variable tone have been flying about. This means that my muscles are not co ordinated to my brain messages and my movements aren't voluntary at the moment. So I can move my arms and legs but not in a controlled way. The retained atnr refers to a developmental stage all babies have and stands for asymmetric tonic neck reflex. I should have passed this milestone by now but my body seems a bit stuck at this stage. The therapist is giving mum and dad lots of tips about trying to support me to keep my head more central so that the involuntary movements are reduced in the rest of my body and lots of exercises and stretches to do to prevent my muscles becoming too tight and contracted. I have a schedule now to do this at least twice a day and I really don't like it. It's always the way that you have to do the things you hate :( I have also been seeing a cranio sacral therapist. This is worth a google and it is helping me and my mum to understand more about my traumatic journey into this world and trying to help us feel safer here and to try and help me forget that very scary time. Will keep you up to date on how this goes.
I had a day with daddy a couple of weeks ago whilst mummy took some time out to see her friend. I tried very hard to be good girl for him and we had a scrummy day together. I still wake up quite a lot at night- mum and dad say its every 2 hours but it feels like I have been asleep forever when I'm asleep! Mummy has heard from another mummy who has a baby girl quite like me- she liked to be perched on people's shoulders and hated the car seat and buggy like I do! This other mummy told my parents that she doesn't remember when all the crying and distress stopped but it did. I am trying very hard to not cry so much but there is still so much to cry about right now. I'm trying I promise, mummy and daddy :)
There are so many different treatments out there that are being explored to find out what I would benefit from. All these treatment need money and I can't thank you all enough for your generosity. I wouldn't have been able to have done any of the above without your help. Unfortunately it's a lifetime of this level of input and more, so it's great to hear that there are more events coming up. As well as intensive weekly neuro developmental physiotherapy, we are looking at a therapy called Vojta therapy- this is also very intense but would love to hear from anyone who has heard of or had any of this therapy. My auntie Jodie recently said that "poison and medicine are often the same substances but given for different intentions" I know that mum and dad are keen to not give me too many medicines so they are looking into alternatives and this includes trialling high dose of vitamin c to support muscle growth and maintain inactivity of my cancer, magnesium muscle spray to help with my muscle tightness and fennel tea to help my tummy and my windy pops. That reminds me- I have a check in 2 weeks on how the tumours in my eyes are doing. Keep your fingers crossed guys that they are shrinking like old grapes!!
It's been a busy time and it's only going to get busier. Please keep your visits up- its getting towards winter and mum and I hate being at home on our own in the daytime.
I look forward to hearing about the events coming up and seeing some of you soon.
My grandad larry had some good advice for my mum the other day about staying cool whilst all the chaos goes on around us. He said "keep your tongue out!" (like the doggies do)
Bye for now friends
It's wonderful to hear that the specialists are giving you some practical ways to helping Evie improve and that things are looking a little brighter. Praying for more small steps x