Easter Holidays !!!

The Easter Holidays have been fun and hectic as holidays usually are!

Firstly Easter bunny was very kind!!

Mummy and Daddy sent these to Easter bunny!

And the rest of the family sent these to Easter Bunny!!

So there has been lots of chocolate in our house!!!

Also this Easter Lilly had to have her baby jabs re done, as her blood is not showing signs that her baby ones worked and they have gone from her blood stream, so the doctors are hoping that re doing these will work and help give her an immune system? lets hope they work because if not more drastic measures will be taken to give her an immune system!! but she was soo brave having the needles, but later on that day she had a sore arm, bad temperature and fely generally yucky and said the 'nur' nurse was a 'badboy' bless her!

Brainwave

Next week we go to Somerset for the fourth time for Lilly to have therapy at the Brainwave centre, for more information on Brainwave visit this link http://www.brainwave.org.uk/ !

They are brilliant there, and there advice and therapy has helped Lilly soooo much!! From her improved speach, balance, mobility, help with her spd and the list goes on, we love them!! so were very excited to get there again!!

After brainwave we are off the visit Lilly and Ryan's godfather and his girlfriend in Brighton so we can have a few days by the sea chilling, having laughs and catching up with our fab friends there also while were there were going to watch the Brighton Marathon!!!!

The Brighton Marathon!!

Lilly and Ryans wonderful godfather Andrew Russell is running the Brighton marathon on sunday the 18th April for Lilly Mae's Appeal, were so very proud of him so everyone show him your support!!!

Lilly almost bursts with excitement!

This week Lilly had her first lesson with the horse riding for the disabled group and she LOVED IT!!
Horses are her favourite things ever she can sign 'horse' 'saddle' 'hat' and the word she uses to say horse comes out 'yah yah' so Saturday morning we went to see the Yah Yah's, and she was just squeeling with excitement and then when she saw her pony for the lesson she was fit to burst!

This is Lilly meeting her pony 'Minnie'

Then Lilly got settled on to her Pony and she had a fantastic 30 minutes riding around the run on Minnie with her 3 grown up helpers..

Grinning away like a cheshire cat!!

After her lesson Lilly was sooo happy and content and was then very very tired due to her severe hypotonia so she had a long nap afterwards.

Special Horse riding sessions given by experienced staff can help children and adults with special needs and disabilities in many ways, the ways we are hoping it will help Lilly are in helping her hypotonia and hypermobility syndrome, her sensory processiong disorder, her balance and coordination, her speach and language skills, plus many of her other problems could be helped by it, so we think its going to be amazing for her.

Watching Lilly have her lesson was just amazing, she did sooo well and im sooo proud of her, Well done Lilly xxxx

Growing up fast!

Lilly seems to be growing up soo quick and is turning into a proper girly girl bless her, All weekend she wanted to spend her time dressed up! either as a fairy or as upsy daisy from nightgarden, here she is as upsy daisy!

She also has took to reading my magazines lately, she looks so cute and funny sat there reading my mags hehe and if she see's nice clothes or pretty ladies she says 'awwww ritty'

Yesterday We had an appointment with orthotics where lilly had plaster casts re done so that she can get new splints as hers are getting too small, she will be getting slightly different splints that will be a little more supportive, lilly was not impressed with having the plaster casts put on so we had to distract her with bubbles! but she liked looking at the pictures they put on the splints and decided on the butterfly pattern!

She was also measured for a special helmet as she has outgrown her old one and has being falling lots lately especially now she has the eye patches so she needs any protection we can give her, but she decided on a 'pink' one!! grrr i tried saying the purple one but she wanted pink! so she'd defo getting girly!!

She also had her IEP this week which went well she still on paper seems to be making no progress at all with her targets, but is making good progress at school in other area's and they are very happy with her, and she seems sooo happy there and loves her support teacher lisa soo much so as long as she is happy thats all that matters!

This week's high's and low's!

On Monday we were given the devastating news that Lilly's eye's are still deteriorating which has totally floored us, Lilly now has to wear patches for half of her day to see if this can help her vision at all, but as you can imagine mobility and balance problems and only one eye which is very poor is not a good combination!! as our door frames, tables etc etc are finding as Lilly crashes into them all, its heartbreaking, im just hoping its all going to be worth it, as the doctor doesnt think it will help much if at all as her vision is so bad but we have to try anything right now.

This week we also had a meeting with parent partnership who are advising us for the end of the month as we have a combines CAF meeting and Lilly's first SEN statement meeting, she doesnt think dual schooling will be a problem at all in the future so thats fantastic news.

Some 'big girl news' this week is Lilly thinks her cot is for babies but as we are soon to be moving home temporarily while some work is done on our home, there isnt enough time to get a new bed to have to take down again to move and as we still don't think she could manage a bed without falling even with rails and hurting herself, we got her a ready bed to see what she would make of a 'big girls bed' well she LOVES it , she still isnt sleeping all night but is settling better and accepting bed easier.

Some exciting news for Lilly is that today i booked her horse riding lessons with the riding for the disabled company, they think this will help her balance, confidence, speach and the motion is also great for her sensory processing disorder, and as most people know she LOVES horses so i can't wait to see her face next week!!

Lilly's story.

In Feb 06 Our prayers were ansered we found out we were finally expectin a 2cnd child we were over the moon, early on i felt something wasn't right but people said i was probably just extra nervous as this pregnancy was so longed 4 i tried to relax & was feelin gr8 until i got my tripple test results i had very high afp levels which point to either spina bifida or downs syndrome i was so scared & upset i was offered councilin 4 abortion or amnio testing i refused as i wouldn't be havin either so they ordered a indepth ultrasound scan after 1hr & me havin to lay in all sorts of positions so they could view our baby at every angle they said they thought everything was fine even though our baby had hardly moved 4 them & didn't move the lower half of her body at all, this wasn't a surprise to me though as my baby hardly moved at all i told numerous medical people this who all said it was ok i didn't think so as when pregnant with our son he moved lots this felt so different but i was told not to worry, i always measured small for my dates but was told not to worry i then developed a hernia which made getting around uncomfortable, 3 wks before our baby was born my waters broke very slowly, i went to the antenatal clinic they confirmed my waters had broke & said if i hadn't delivered within a wk id be induced i was so excited our baby was comin!! we tried everything to get the baby here as you do anyway sun morn i had to be induced so i went to hospital where they gave me the 1st lot of prostin i was shocked to find they do no more for 7hrs so we just chilled at the hospital makin the most of the silence before our baby arrived 7hrs later they gave me a 2cnd lot, after 2hrs i started havin sml pains & when they got stronger i asked for pain relief i was told it wasn't labour only prostin pains & to try & sleep, not easy as i knew i was in labour so they gave me a morphine shot & told me to sleep 45mins later i felt things were happenin fast so i got my husband to get a midwife who patronisingly asked what was wrong, she looked down there only to see our baby's head so from that moment it was all a little panicy 40mins later i pushed our angel Lilly into the world. I asked if Lilly could be placed straight onto my tummy as i wanted skin to skin contact straight away but was told she had a very short chord so they couldn't until the chord had been cut & they commented on how sleepy, weak & tiny she was we were very shocked when they weighed her as she was tinier than we thought only 4lb 14 which was shockin as she was only just over 2 wks early we were even more shocked when i delivered the placenta as it was tiny & black they said she had not been recievein nutrition for wks & no one had noticed, the chord was ony 6-8 inches long, as she was so sleepy & couldn't hold her body temperature very well they put her in an incubator for 5hrs after this they said she was well enough to go to the ward at this point i was on cloud 9 but had a nigglin feelin as something didn't feel right & i thought she looked different her eyes just didn't look like ours & her face looked a little different to ours but i was so happy we'd finally got our daughter a boy & a girl we were complete all was well until later that evening when durin visiting she had problems breathin & was whisked to the special care unit, from that moment on life has changed! later i asked james if he thought lilly looked different & he was shocked & i think upset with me for saying it he never really answered me. The following day we were called into a private room by a consultant, a nurse & a councillor i was thinkin oh my they think like me that something is wrong i was so scared but they were talking about her breathin & feeding probs & her being tiny but no mention of her appearence or anything so i started to relax BUT then they said 'have you noticed lilly doesn't look like u both' it was then my world felt like it was crashin in they thought what i thought how can that b a coincidence i couldn't breathe i think i felt my heart break literally i was so scared wot this all meant they then pointed out lots of things about lilly they said wern't normal or that were different & they said as far as they were concerned she had a genetic illness they just didn't no what but there main thoughts at first were downs syndrome mainly because lilly's has dysmorphic features, upward slanting eyes, epicanthic folds & low set ears& she was very sleepy she didn't wake for 10 days after birth, she couldn't feed also her mouth & tongue are larger than other peoples, those tests were negative but they carried on testin to see what was wrong as on top of the early probs & her appearance lilly has global development delay,weak muscles especially in her left side & legs,hypotonia, visually impared,hyperteiorism, is hypermobile & possible neurological problems, low immune system,low muscle tone, pseudostrabismus,cold hands/feet but despite all this she has always being sp content & so happy. Then in September 2008 we got the call to go straight to the genetisists office, i knew theyd found what was wrong as you normally wait months for appointments, that day our lives changed forever Lilly had 17q21.31 microdeletion syndrome, a very rare genetic condition and she would have this forever this was it , it was real, bang goes my hope it was something she might grow out of! now the journey began! finding out more about the condition, which wasnt easy as it only effects a handful of people in the UK and 50 cases worldwide!


More recently we have also discovered that lilly has epilepsy, brain damage called PVL and scarring to the white matter of her brain, were not entirely sure what this means but research seems to show she may develop cerebal palsy , we also found out last month she has sensory processiong disorder and other majoy sensory issues, her eyesight is still deteriorating, we still are waiting on more details about  her respiritary problems and a few other things, im just sooo greatful that she is sooo brave and happy even though she goes through so much, love you my little tinkerbell, your amazing xxxxxx