Lilly Mae's Appeal

March 2010 Update!

Vikky Skidmore — Tue, 02 Mar 2010 10:22:52 +0000

Hi everyone, Im soo sorry yet again that the update on Lilly has taken me so long, but it has been pretty hectic with Lilly since i last updated you on her health etc, at the end of last year she was in and out of hospital with chest infection and chest infection and breathing problems, and then in December she was so ill she was admitted to the high dependency unit and was on hourly nebulisers, enhalers, oxygen and antibiotics, thankfully she was home in time for christmas but is now on permanent antibiotics as her white blood cells and pneumococcal levels are too low which explains her low immune system.
We also found out just before christmas that Lilly has pvl brain damage and scarring to the brain which has devastated us beyond belief.
Then last month we were told she has sensory processing disorder which accounts for some of her 'Lilly-isms' but were currently looking into ways to try and help her with that.
Last week we saw the cardiologist who said lillys does have a heart murmour but for now it is innocent they could still see too much flow through her valves in the heart but says right now its fine and needs no treatment! phew! so we will monitor that over the coming years.
Yesterday we found out lillys vision is still deteriorating which has totally devaststed me so im praying we soon have enough funds to build lillys sensory room as this will help to stimulate her eyes and maybe help them to improve? or just to slow the deterioration down.
On June the 5th my friend Louise is organising a vw convoy from Barnsley to Skegness for lillys appeal if you are interested the details are here;

http://www.facebook.com/pages/Rotherham/Lilly-Mae-Skidmore/169135555428?ref=ts#!/event.php?eid=322586931239&ref=mf

Thankyou for reading and if you are on facebook become a fan of Lilly here to get weekly updates on lillys health and development;

http://www.facebook.com/?sk=messages&tid=1343076249778#!/pages/Rotherham/Lilly-Mae-Skidmore/169135555428?ref=ts

or join her appeal group on facebook;

http://www.facebook.com/?sk=messages&tid=1343076249778#!/group.php?gid=32995522737&ref=ts

thankyou all for reading and for your continued support it means so much to us xx

Quick update.

Vikky Skidmore — Thu, 17 Sep 2009 15:26:51 +0000

Hi all thanks for taking the time out to read these blogs, I havn't been able to update it much lately due to lillys health and mammoth appointments, so i thought id just give you a quick update Lilly is just getting over a bad cold which i was convinced was as usual going to settle on her chest and make her iller but fingers crossed she is getting over it, she is still not sleeping more than a few hours a night so were very tired!! weve an appointment with bluebell wood childrens hospice next week to see if they can offer us any respite so we can sleep, im hoping they can! although i feel a little bit of a failure for needing their help but carrying out all her physio, therapy and appointments after no sleep is no fun at all!

Were still waiting for appointments to see the cardiologist and the immunologist so we've no new answers there about her health, we see the respiritory doctor next week so we will see if he agree's with lillys other doctor about her needing a sat monitor at home and possibly oxygen for when her breathing is bad.

One thing i am looking forward to and not looking forward to is she is getting splints for her legs, now i don't want her to have splints but one thing i have neber being able to do is buy lilly pretty, girly shoes as she has always had to have to huge special boots to help her walk, the doctors are hoping the splints will do the same job so hopefully they will work and she can finally have a real pair of shoes, i will be soo emotional on that day as its upset me for years not being able to buy my daughter nice shoes! the only drawback is she has to have plaster casts put on her legs on monday to give a good cast of her legs for the splints so that will be fun!! NOT!!

We also have an appointment with her eye doctor for the dreaded results of the cortical visual imparement test and also for another eye test, so wetre praying for no more deteriation in her vision.

Also one good thing is Lilly starts hydratherapy sessions next week so that should help her muscles!

Till next time guys take care and THANKYOU for all your continued support and for all the recent donations! and remember if you know of anyone who may be able to help us with a donation of raffle prizes for the 'stars in our eyes' evening that would be fantastic thankyou xx

' Stars in Our eyes charity music concert'

admin — Thu, 17 Sep 2009 14:27:25 +0000

' Stars in Our eyes charity music concert'
For Lilly Maes Appeal
It will be at Ings Lane club in Bolton Upon Dearne on Saturday 7th Nov at 7pm tickets are available from the club on 01709 893478 Tickets will be £5 Per Person, any remaining Tickets will be available on the door, But Please book Early to Avoid dissapointment. We will hopefully be having pie and peas at a small charge and if we get enough prizes donated we will also be holding a raffle, so if anyone knows anyone who can donate any prizes then get in touch and let us know. Sorry but no children will be allowed at the event.

Thank You

admin — Thu, 17 Sep 2009 13:57:15 +0000

A Huge Thankyou to all who gave up their sunday mornings and did the sponsored walks, early indications show we raised £540 for Lilly Maes Appeal and Unique. We are still waiting on a few people to send back Sponsor forms, please could you do this ASAP.
Thank you Lilly Maes Appeal

New News

Vikky Skidmore — Mon, 20 Jul 2009 20:04:59 +0000

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

GREAT news n worrying news!

Vikky Skidmore — Mon, 27 Apr 2009 08:22:14 +0000

After Lilly was discharged from hospital thursday i was on a downer (i will explain why in a minute) but got home to a WONDERFUL surprise a friend of ours had decided to nominate Lilly for the 'Young Achiever of the year' and out of loads of entries she has got right down to the final, so on the 7th may we are off to a big posh awards ceremony im soo proud of her and excited and greatful to the lovely tina even if she doesn't win to get this far to the final is fantastic and is great recognition to our wonderful and very brave little girl, so keep your fingers crossed!!

While Lilly was in Hospital last week the heart scan found two problems one that they say isn't serious at the moment something about increased blood flow through one of her heart valves but in typical Lilly fashion they havn't heard of the other problem so don't know if its serious yet grrr so im worried sick, the other tests they did when she was in are not back yet so don't know how they went yet, and today she is going in to the hallamshire hospital for an EEG so fingers crossed that goes ok and she isn't too upset by it?

Thankyou all for reading lilly's news blog and for all the lovely comments on her guestbook when she is older im sure she will be very greatful for them THANKYOU xx

New worries and concerns :(

Vikky Skidmore — Sat, 18 Apr 2009 13:12:53 +0000

Yesterday Lilly consultant rang to say her test results were back from when she was in hospital a few weeks ago and they wern't good results
Basically her saturation levels were very low during the test and for 2 hrs during the evening they dropped dangerously low were not sure if this was triggered by fits or by a possible heart problem or a problem with her airways being obstructed?? but basically next wednesday we've to go in hospital at 11am for a heart scan on lilly and then see the nurse about her medication n chest after this she will be admitted till thursday so they can do tests and also repeat the overnight saturation test, im so scared and confused and worried what this could mean for lilly so keep her in your prayers please!

Also nxt week we go to the children's hospital to see the genetic eye specialist mrs marr to see how her vision is going and lets pray it hasn't deteriated at all! and were also there to discuss testing lilly for cortical visual imparement.
then tuesday (my bday)were seeing wheelchair services to get her some better and more supportive straps as even with the ones we have she is still flopping and not sitting well.
then wednesday we have the heart scan and then being admitted for the tests then thursday we have physio and speach therapy and on friday portage PHEW roll on the weekend but then the week after we have her eeg tests and some other app's so no rest for us!

but on a positive lilly is doing really well with her signing and her new signs are beautiful, duck, bisuit and butterfly and she even tries to say beautiful as she signs it, its soo cute!

Update

admin — Tue, 31 Mar 2009 13:06:54 +0000

Last monday week we had an appointment with lilly's neurologist which went ok he is lovely so explains things well, he said the funny episodes lilly has are in his opinion epilepsy im not so sure maybe its deniial or intuition?? we'll see also she needs a mri scan under anasthetic in 3 weeks to as he wants a closer look at her brain as he thinks the problems with her pain threshold and not feeling full could be down to damage in the centre of her brain he also wants to make sure she has no other problems with her brain then in 4 weeks she has to have an eeg scan test to check for epilepsy but he said this test will only pick up if she has a seizure or absence during the test so if she doesn't they will do a 48 hr one and if this shows nothing up it still means she could have it just that nothing happened during the tets.
Tuesday we saw orthotics who fitted lilly with insets for her shoes to try and help her walking, fingers crossed this helps as if it doesn't she will need splints or ankle supports.
Then wednesday unfortunatly Lillys breathing probs (she'd had since a funny episode sunday night) got so bad that we had to take her to hospital where they admitted her and for 24 hrs she was on hourly nebuliser's as that was the only thing that would keep her breathing stable but her sat's were worryingly low,she then began a course of steroids, she also had a brief session on oxygen through the night then we managed to get her on to just enhalers having 10 lots every few hrs which we eventually managed to increase to 4 hourly but still the 10 lots but they then heard more problems on one side of her chest so she had to have a chest xray to check for pneumonia that came back with shadows but hopefully not enough to be pneumonia they now think her sats are so low due to a heart problem so she then had to have an overnight tracer to monitor them which we will hopefully get the results from any day we finally got her home saturday and spent all weekend concerned as she wasn;t improving so yesterday we ended up back at the hospital on their advice but luckily we came out again last night and today she does seem on the mend FINGERS CROSSED!!
she has to have a heart scan asap and we shud get the results from the tracer soon her doctor also wants to do some other in depth tests and also test her adrenal levels as with her condition adrenal insuffincency is quite common so i will keep you posted as we have the tests and get the results.
THANKYOU for all the supportive emails, texts and supportive messages while she has been ill we really apreciate it, n please keep her in your thoughts as she recovers so that we can avoid any more lengthly hospital stays