Fund’s for beautiful miracle Emily

Thanks to your kind donations we were able to take Emily to meet Neil Shah at GOSH yesterday. I have to say that although I knew it was in Emily's best interest going the private route handing over the private consultation fee actually pained me!

Anyway we spent about 30 mins with the guy himself, and it turns out he used to work with the gastro consultant from Brighton so is going to make sure the GP gets in contact with him so that Emily can have the tests that she needs.

He took a history and agreed Emily's meds were the best available so we are keeping her on those. He looked at the photo I took in of a nappy filled with mucus and didnt even flinch, he agreed from her exzema, mucus nappies, reaction to dairy that she does have an allergy to cows milk and maybe other foods. We are carrying on being dairy free and will look at other things at a later date. 

As we already knew Emily needs a videofloroscopy to check if her swallow is safe as we have had two occasions of aspiration over the winter period. The fact that we are edging closer to bronchiollitis season is playing on our mind and we are keen to get the swallow checked before the weather changes as this makes her high risk. It is looking likely thanks to our new GP and Mr Shah writing a reccomendation for Emily's care to be transferred and that Brighton will be able to do this initial first test. He feels that we need to work through Emily's body ruling out problems, so starting with the anatomy before moving on to the more invasive testing. 

He told us that children with brain damage often have problems with their swallow and he was expecting this to be part of the problem with Emily. 

So where we are at is that hopefully Brighton will now take on these tests, I will give them a week or so then chase up.

We know all of these problems are having a huge impact on Emily's cerebral palsy, last week was a particularly bad week for us with 4 out of 7 nights where she was pretty much awake all night. The two days she was better was when she had had an hour of physio and a swimming session.

So we have decided that we are going to book Emily into some extra therapies to see if it will help relax and stregthen her. We will be using some of the money we have fundraised for some private hydro/swimming sessions which arent cheap but will really help Emily be able to relax. We are also looking at other therapies that will benefit her and may introduce an extra private PT session each week, if we can find a peadiatric physio that will take her.

We are know is that as Emily grows and with her other medical conditions we will need to have funds to help with things that the NHS just cant offer her. Things like specialist carseats etc arent available on the NHS so we will need to fund this privately and at a later date she may need other treatments that arent readily available on the NHS. We hope to keep fundraising, family and friends have been full of ideas and all my cake money goes into Emily's fund. 

So thats where we are at, Im hoping I will have a bit more to tell you after our next appointment. We cannot thank you enough for your kindness so far. 

Emily has a long journey ahead and we don't know what the future holds, please keep sharing our story so we can keep fundraising. 

Thank you 

xxxx

We are completely overwhelmed and astounded by the generosity of everyone that has donated to Emily's fund. 

Thanks to your generosity we have been able to book Emily's first consultation with a peadiatric gastro at GOSH for the end of August. (sooner if a cancellation becomes available). We still dont know the full cost of Emily's treatment, or the future regarding Emily's cerebral palsy but it's definately looking brighter thanks to you guys. 

We are hoping to keep fundraising so we can be prepared for these additional medical costs, equipment she will need thats not available within the NHS, and extra therapies such as extra physio and hydrotherapy, special therapy toy's etc so please do keep sharing our cause.

We have two fundraising events in the pipeline so keep checking back for more info and Emily updates! 

I cannot in words expressed how touched we are by everyone and I know I keep going on about it but we are so shocked.

I will update again soon. 

Thank you xxxx