Lilly Mae's Appeal

Hi all so sorry I havn't updated this in a while it has been sooo crazy here, we've had record numbers of hospital appointments and also my mother in law has been very ill in hospital for over 6 weeks so not had any spare time!
I'll start with any good news! Firstly Lilly has been granted a statement of special educational needs so when she starts nursery in January she will definitely have 1 to 1 help which is great!
Also her mri was clear!! yayyyyyyyy
But the siezures she has have been confirmed by her neurologist as epileptic siezures but luckily at this stage they are happening far enough apart for us to not need medication or anything yet!
Lilly is doing great with her signing and last week said 'hello' for the first time it was fantastic!! its a little unclear still but its definitely hello!
We saw Lillys paediatrician last week also and he checked her spine and thankfully she isn't showing signs of scholiosis yet which is great, he has ordered more tests of her immune system as its very low I'm just praying a few booster injections will be enough for her and we dont have to resort to transfusions or anything like that!
He also took some blood to look into possible adrenal problems but I don't really understand much about that!
We're still awaiting her appointment for the cardiologist because as well as the 2 probs they found with her heart she has also been recently found to have a heart murmour too so she needs this appointment asap and her nightime sats are very low and she still has the nighttime breathing issues so i will keep you posted on all that!
He also gave us some melatonin to try and help her sleep so fingers crossed it kicks in soon were soooooo tired!!

On Friday we pick up her newest special boots it has being talked about her needing leg splints but were not keen so we are trying a new kind of boot that comes higher up her legs and combining that with the special inserts she has then hopefully we may not need the splints?? Fingers crossed!
On Thursday she had a fall and broke her glasses so we went to the opticians and they cant be repaired so she gets posh new glasses!! Cant wait to see her in them she will look sooo cute!
On Monday we head off to Brainwave in Somerset for some much needed and very costly private therapy for Lilly she loves it there and it helps her loads its just a shame its so costly and so far away! oh well at least we get a few days of girly time without the boys!
Due to the council being totally rubbish and not being able to help us with the therapy/physio room we need for Lilly, we are madly thinking of ways to raise more funds for her appeal so that we can make her dream and the dream we have to make her life easier a reality, we are also hoping that having some sensory equipment in the room will help us to save her deteriorating vision so if you have any ideas on how we can do this PLEASE get in touch via the site or her facebook group.
THANKYOU all I'd better go now Lilly is needing feeding!

Thankyou all for your support it means the world to us,
xxxx