tag:lucymailiu.blog.co.uk,2009-11-09:/Lucy was born on 9th october 2007 a beautiful daughter who carries an extra backack by the name of prader willi and here is her story of the struggles and the joy of bringing little Lucy in to this world.Lucy will have to work harder and so will her mummy as life wont be as easy for us having this extra load to carry but we will fight each road on this the start of her journeyMokoFeed2009-11-09T21:14:59+01:00tag:lucymailiu.blog.co.uk,2009-09-09:/2009/09/09/i-love-this-girl-6933128/mummy2lucy2009-09-09T21:16:49+02:002009-09-09T21:16:49+02:00 <p><img src="http://data5.blog.de/media/468/3879468_5ec6d8e144_m.jpg" alt="Dans birthday,sheffield sept 09 035"><img src="http://data5.blog.de/media/469/3879469_91ae221e42_m.jpg" alt="Dans birthday,sheffield sept 09 037"><img src="http://data5.blog.de/media/471/3879471_8371769bf5_m.jpg" alt="Dans birthday,sheffield sept 09 042"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/09/09/i-love-this-girl-6933128/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-09-07:/2009/09/07/so-confusing-6915693/mummy2lucy2009-09-07T20:52:45+02:002009-09-07T20:52:45+02:00 <p>Well we finally got to Sheffield childrens hospital and had our consultation with the spinal team there<br> We have been given more information and they seem to have a lot more relaxed approach to the whole thing </p> <p>Lucy was xrayed sitting again and it showed her curve at 45 degrees and looked pretty awful on the xray but the consultant told me not to pay too much attention to the xray as it was really hard to get a true reading at this age and the fact that she was sitting would make it worse.</p> <p>I asked him if Lucy was his child,what actions would he take and to my surprise he said he would do nothing but keep a check on it.<br> This has thrown anothet cogg in the wheel as I had never thought just leaving it was an option but in a way has made me feel a lot better,he thinks she is so flexible that it will not husr to leave it a while longer before bracing or looking at other treatment<br> One thing he did say was that no way would she be needing surgery anytime soon as her back has time to correct itsself yet</p> <p>I am now in a state of confusion wondering what steps to take next,I think at the back of my mind I know I will carry on with the brace but they are going to make her a new brace,one that she will be more comfortable in hopefully.<br> We go back at the end of the month to get her fitted </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/09/07/so-confusing-6915693/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-08-25:/2009/08/25/where-is-my-baby-6816569/mummy2lucy2009-08-25T09:08:58+02:002009-08-25T09:08:58+02:00 <p>I cant belive how fast Lucy is growing up,its like she turned from baby to little girl almost overnight.<br> Its funny how when she was very little I was asked how old she was and I would always take a bit of time off as she was always so behind and tiny and I guess I wanted to protect her(and me) from questions and raised eyebrows.<br> Now I find I am adding time on,she is 22 months yet I always say she will soon be 2!! </p> <p>We went to a transport museam at the weekend and we got to ride on old busses and trams and it was amamzing to see little Lucy sitting on the seat swinging her legs looking out the window and pointing to everything and she even said Bus!!</p> <p>When we came out we picked up a leaflet and when Lucy saw it the next day she pointed at the picture and said bus.<img src="http://data5.blog.de/media/888/3822888_d84f2ab649_m.jpg" alt="Mundlesey aug 09 056"><img src="http://data5.blog.de/media/889/3822889_a29e5beba5_m.jpg" alt="beach aug 09 056"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/08/25/where-is-my-baby-6816569/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-08-05:/2009/08/05/new-xray-pics-6659279/mummy2lucy2009-08-05T20:07:52+02:002009-08-05T20:17:18+02:00 <p>Lucy had her first xray in her brace and as you can see its holding her back pretty straight.</p> <p>This is when she is in it....we are still not very compliant at the moment,due to the fact that I have not seen the hospital at Sheffield yet,we are kind of holding out till then.I also figure that summer will be on its wat out as well so it will be a lot cooler for her.<img src="http://data5.blog.de/media/885/3756885_787a754c78_m.jpg" alt="Lucys back july 31st 09 005"></p> <p>As for everything els,its all going well.Lucy has come on so much in the last few months and she understands so much more than she can say.She doesnt seem to need to learn to speak as she never has a problem getting across what it is she wants.</p> <p>I was quite surprised today though just how far her understanding and memory goes,a few weeks ago we parked the car in a car park that was next to a river and there were a lot of ducks and swans,Lucy loved them and I kept saying look Quack quack to her.<br> Today we drove to the same car park and Lucy was all excited before we even parked the car and she said Quack quack to me as clear as day.<br> She had remembered it,i was amazed,I really underestimate her at times,my clever little girl </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/08/05/new-xray-pics-6659279/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-07-23:/2009/07/23/great-news-6571056/mummy2lucy2009-07-23T08:28:35+02:002009-07-23T08:28:35+02:00 <p>There has been an adjustment time going on to Lucys brace and yes I did find it hard at first,I had a feeling that the brace was not right for Lucy,after doing research I noticed that all the other younger children were getting custom made braces and these looked a little easier to live with.</p> <p>I then found a brace called the spine core brace that works with stretchy bands that pull the torso in to position,a brace that can still be worn for excersise<br> <a href="http://www.londonscoliosisclinic.co.uk/index.htm">http://www.londonscoliosisclinic.co.uk/index.htm</a></p> <p>Here is a link to the web site.</p> <p>I made a few calls and spoke to a great guy there who offered to see me as an NHS patient at Sheffiels childrens hospital,it meant a 6 hour round trip but I will travel the ends of the earth for my children so after a little deliberating from my doctor we got a referral and I am going to see the doctors at the Sheffield scoliosis centre,she will be in a spine core brace as soon as she is big enough,around 18 months time but they have said in the mean time they will be making her a custom brace that she will find a little easier to wear.</p> <p>We are wearing th boston brace at night time now so that she still has plenty of time to play and run around.......yes I did say run,she has taken to running at top speed everywhere </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/07/23/great-news-6571056/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-07-03:/2009/07/03/a-little-wonky-back-update-6444456/mummy2lucy2009-07-03T21:07:52+02:002009-07-03T21:07:52+02:00 <p>Ok I am sorry I have not updated with Lucys brace news but to be honest I have not been able to get my head around the whole thing and definatly underestimated how it would impact on me,Lucy and the family.</p> <p>On the day of the brace fitting,we were shown in to a very hot windowless fitting room and presented with what I can only describe as a tourture vest.<br> Lucy was squeezed in to it and she screamed and screamed,it looked awful and all that was going through my mind was that she will never be able to wear this thing for even a nano second let alone 23 hours a day.</p> <p>The brace was then trimmed down to fit her but what i was worried about was she didnt seem to be able to sit as it came down so low.</p> <p>We were sent home and told to just build up her time in it but all I was thinking that there was no way,this would restrict her movement way too much.</p> <p>We put her in it for 2 hours over night building it up in her sleep time and then for an hour or 2 in the morning but during her wake time she would not move and just lay there with a sad look on her face,I was just an emotional wreck and one side of me was saying take it off and leave her be and the other side of me was saying we need to correct this back before it gets really bad.</p> <p>After having the brace for a week I took her to see her chiropracter to see what he thought of the brace and how effective he thought it was and also if there was a kinder brace for her out there.<br> He took one look at Lucy in the brace and said he was not pleased with it at all,he didnt like the way in compressed her tummy and ribs and took a few pictures of her in it to send to a specialist to get a second opinion,I am awaiting his news with baited breath.</p> <p>After many attempts at trying her in the brace watching her unable to sit,she either lay down or stood and she was so unhappy we decided that there were certain parts of the brace that were restricting her way too much and hurting her so we (trimmed) it down a little,SHHhhhhhhhh!!!!</p> <p>We had to make sure that we were not compromising the job the brace did but felt there were certain parts of the brace that were to high(Eg ribs) and certain parts too low (eg Legs) and in fact did not affect the way it held her back in place.</p> <p>The brace took 3 months to make as they lost the first order!!! so maybe by the time we got it it was ill fitting anyway and we know it wont be long before they are refitting her again but I will know what to look out for now and areas of concern.</p> <p>Lucy is coping a lot better in her brace now and she even managed to bend down to pick up a toy tonight,she is still not able to stand up straight but maybe that will come,she stands with her body leaning forward and bends her knees</p> <p>I am not sure they will pick up on the fact that we have made a little alteration to the brace as it was very subtle but if they ask me I will tell them,I have to give her a good quality of life at the same time as trying to mend her back,my instincts never fail me when it comes to my children,even more so with Lucy and I feel that maybe now we will cope with it..........I will let you know!!!</p> <p>I will post some pictures soon,I dont think I was quite ready to face pictures of her suffering so maybe I will be able to post some of a smiling little girl in her new brace. </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/07/03/a-little-wonky-back-update-6444456/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-06-11:/2009/06/11/beautiful-6286085/mummy2lucy2009-06-11T22:21:09+02:002009-06-11T22:21:09+02:00 <p><img src="http://data5.blog.de/media/419/3588419_8d1ebabeb1_m.jpg" alt="chocolate cake june 09 055"><br> I hate the negative,and my last post was about the negative part of prader willi so i thought I would cheer up her blog with a picture taen today of my baby,awww she is beautiful </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/06/11/beautiful-6286085/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-06-11:/2009/06/11/d-day-6286057/mummy2lucy2009-06-11T22:15:55+02:002009-06-11T22:15:55+02:00 <p>I have the news that i have been dreading and Lucys back brace is ready next week!!</p> <p>I know she needs it,her back is bad,its getting worse and I have to accept this fact and she has to wear this brace but i am really dreading it!!! I hope hope hope that it is not as bad as I think will be and I will be writing a message on here to say how silly that I worried so much.</p> <p>I am thankful that Lucy has been so well and I know that things could be so much worse,I have accepted her condition,I am ready to deal with all it brings and probably fear the worst but it brings comfort every time things are never as bad as they seem.</p> <p>Lucy is so steady on her feet now and although she falls a lot still,she can protect herself better from the falls she gets,she did however have a really bad accident a couple of weeks ago when she fell and dislocated her arm,it was an emergency dash to the hospital but they clicked it back in place,just like that!!!<br> I will update her brace news when we know a little more.Here is a picture of her wonky back,bless my baby,I love you little girl,you are my inspiration<img src="http://data5.blog.de/media/411/3588411_de12caab3e_m.jpg" alt="Hands march 09 005"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/06/11/d-day-6286057/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-04-30:/2009/04/30/i-have-been-a-very-slack-poster-on-my-little-6037417/mummy2lucy2009-04-30T21:35:22+02:002009-04-30T21:35:22+02:00 <p>I have been a very slack poster on my little darlings web site,mainly because we are just busy getting on with life and looking after my family along with a very energetic Lucy who is just leaping along in big giant strides.</p> <p>Now what has happened,Lucy is understanding things,she is very clear on her likes and dislikes and has recently taken on a new awareness of her world and people in it,some she is happy with other she is not.</p> <p>I am not sure if it is because she has been poked and prodded a little more than the average child but she has started to get suspicious of different situations and can be very clingy to me with her uncertainty,take for example a visit to get her feet measured for some new shoes,the assistant took hold of her foot and Lucy was clearly distressed,me thinking back to a few weeks prior when we went to take to Lucy to have some blood work and they took the blood from her foot,she had remembered and I was amazed that her comprehension was so clear.</p> <p>Another time was when her brother was waiting at the barbers to get a haircut and the lady turned on the clippers,Lucy again turned to me and tried to hide behind me,she was worried the clippers were something that she was going to have to have used on her,once she realised that they were not she was happy to go and play again.</p> <p>Some people she takes a liking to and others she becomes shy and coy,some she clearly doesnt like and will have nothing to do with them......Its all so normal!!! </p> <p>I remember reading a post on a forum about stranger danger and how our children with prader willi do not have any danger of strangers and are (over) friendly,this doesnt seem to be the case with my little tinker and she shows such normal reactions to her world outside and it a strange thing to be glad that my daughter has fears but that is what all toddlers are like,its how they learn,my daughter is learning,and more importantly understanding.</p> <p>I feel very lucky to have such a special girl,she amazes me every day.<img src="http://data5.blog.de/media/192/3462192_d703f6852d_m.jpg" alt="portrait april 28th 09 005" vspace="5" hspace="5"><img src="http://data5.blog.de/media/193/3462193_8a67471afa_m.jpg" alt="Bewilderwood april 20th 09 031" vspace="5" hspace="5"><img src="http://data5.blog.de/media/194/3462194_f5d5b107c0_m.jpg" alt="Bewilderwood april 20th 09 105" vspace="5" hspace="5"><img src="http://data5.blog.de/media/195/3462195_d72462b0ab_m.jpg" alt="Easter april 09 023" vspace="5" hspace="5"><img src="http://data5.blog.de/media/196/3462196_492e0593ad_m.jpg" alt="Easter april 09 029 - Copy" vspace="5" hspace="5"><img src="http://data5.blog.de/media/197/3462197_ab7f8795d0_m.jpg" alt="Easter april 09 062" vspace="5" hspace="5"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/04/30/i-have-been-a-very-slack-poster-on-my-little-6037417/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-03-17:/2009/03/17/lucys-hospital-appointment-5774761/mummy2lucy2009-03-17T14:07:35+01:002009-03-17T14:07:35+01:00 <p>Lucy had her hospital appointment and her consultant was very pleased with her progress although he is not going to increase her growth hormone at this time.</p> <p>She needs some blood work doing for her IGF levels and cortisol levels,there has been reports of sudden deaths with Lucys syndrome due to not producing the stress hormone and he wants to see if she is producing her own.She is also to have another sleep study although I know that she has no problems there but I am best to go along with it.</p> <p>Lucy impressed him by her walking but she threw the mother of all paddys when we were in the consulting room,there is a big wooden rocking horse in the waiting area and Lucy has always been a little timid of it in the past but today she decided was the day she would take a ride on him and she loved it so much that she didnt want to leave it and when she was called to our appointment she was not happy at having to dismount her horsey.</p> <p>She kept trying to escape back to the waiting area and throwing the biggest hissy that i have ever seen her do,I honestly came out of that appointment with my first grey hair growing.</p> <p>Dr Datta was still very impressed by this as he said it shows she is congnitivly functioning well and even when he put a chair in front of the door to stop her escaping she managed to push it out the way!!!</p> <p>I honestly dont really remember what he said to any degree as I was so shocked at Lucy and her paddy.</p> <p>We came out the appointment and after a sleep Lucy woke up the little angel that we know her to be,I have to laugh now and Dr Datta was sweet as he said he thinks Lucy is a very clever little girl,but he said he would expect no less with me as her mummy.</p> <p>I handed him a 35 page report on new usage of B12 suppliments and he made me laugh when he said that he knows I will test him on all the data next time.(He is right) I know that I am Lucys ambassador and I have to push hard for her to get everything she deserves.</p> <p>For now I will leave you with a picture of Lucys killer eyelashes,WOW!!!<img src="http://data5.blog.de/media/522/3327522_d509628bf4_m.jpg" alt="hands march 09 001 - Copy" vspace="5" hspace="5"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/03/17/lucys-hospital-appointment-5774761/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-03-13:/2009/03/13/walk-the-walk-talk-the-talk-5752514/mummy2lucy2009-03-13T22:33:33+01:002009-03-13T22:33:33+01:00 <p>Now I have a little walker I have a little chatterbox and also a little girl with some attitude!!</p> <p>She is just so determined and lord help anyone who tries to get in her way,her little temper is starting to show through and she hates not to get her own way.<br> She has this high pitched shreek that just goes through you and really makes you jump in to action.I am trying to stay stronger willed than she is right now as I know that it would be so easy to give in to everything for her,she has had to work so hard for everything,BUT,I realise that I have guide her in how to act and right now how not to act.</p> <p>All said she is still amazingly cute and she has little conversations with me now,not always sure what she is talking about but she puts so much expression in to it that its so sweet.</p> <p>One down side I have noticed lately is Lucy has started to have that drawn look to her face again,like she is about to fall asleep,even when she is not really tired,its a look I used to call the prader willi look and where ever I went people would say,awww she is tired,she is nearly asleep,Well its happeneing again so I am not sure why that is.<br> I am going to see her consultant on Monday so maybe it is just that she needs a higher dose of GH,or maybe just all this walking is just wearing her out.</p> <p>Here are some pics of my little walker,she is walking almost more than crawling now clever girl<img src="http://data5.blog.de/media/153/3316153_4dd85f7a78_m.jpg" alt="Hands march 09 001 - Copy" vspace="5" hspace="5"><img src="http://data5.blog.de/media/154/3316154_950bef80b3_m.jpg" alt="Hands march 09 002" vspace="5" hspace="5"><img src="http://data5.blog.de/media/155/3316155_644580f0af_m.jpg" alt="Hands march 09 003" vspace="5" hspace="5"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/03/13/walk-the-walk-talk-the-talk-5752514/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-03-08:/2009/03/08/check-out-this-5719724/mummy2lucy2009-03-08T23:46:01+01:002009-03-08T23:46:01+01:00 <p><a href="http://mygirlsanddan.blogspot.com/">http://mygirlsanddan.blogspot.com/</a><br> First steps.I find the videos on here really slow down my blog so I have put it on my family blog if you would like to see </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/03/08/check-out-this-5719724/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-03-08:/2009/03/08/phew-she-is-wearing-me-out-5719687/mummy2lucy2009-03-08T23:41:01+01:002009-03-08T23:41:01+01:00 <p>Ha ha never thought I would say those words.<br> Lucy is slowly mastering her walking technique,its slow progress,just like when she started her crawling and I remember thinking then I would never be able to leave her side even by an inch,then she mastered har crawling and things got easier,now we are on to walking........well I am back to heart in my mouth as I watch her waddle across the room in the direction of every table corner,fire place,door.My heart does a flip when I see her sway and free fall.Not always mind,she is getting better by the day but it just cant be left to chance.</p> <p>I have now had to succomb and have purchased a large play pen so that she can be safe if i need to do something,eg go to the bathroom!!!</p> <p>Lucy is starting to say a few more words and has started to say yes and nods at the same time,she doesnt say no but shakes her head side to side in a no action.</p> <p>Things feel very normal at the moment,Lucy is just like Daniel was at his age,not so strong but she understands everything and will follow simple instructions now like fetch you hat,she puts up her feet to put on her shoes,she asks for things and she cries when I leave her.</p> <p>This may sound really cruel but I love it when she cries as I walk out the room or get out the car as I walk round the front to get her,she cries till I get her,she doesnt want me to leave her in her room alone when its time to sleep and she shouts for me when she wakes up.I feel so needed by her now,yes yes she has always needed me,she is totally dependant on her care,but as a newborn she never fed from me,she never cried in the night,she never batted an eyelid when I left the room.Anyone could have been her carer.Not now,she wants,needs her mummy and she lets me know in a very vocal way that she loves me,wants me,needs me and it just fills me with even more love for her too <img src="http://data5.blog.de/media/215/3301215_2c20761cf2_m.jpg" alt="March 3th 09 026" vspace="5" hspace="5"></p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/03/08/phew-she-is-wearing-me-out-5719687/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-03-03:/2009/03/03/wheres-my-beer-5685673/mummy2lucy2009-03-03T12:34:58+01:002009-03-03T12:34:58+01:00 <p>I think Lucy has been listening too much to her daddy as I am sure she is repeating his request for his beer.<br> I just think to hear her little voice (saying) stuff is just so cute.<br> She is really enjoying her strawberries here too,she has a good appetite but at the moment a very normal one,please let it stay that way<br> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/03/03/wheres-my-beer-5685673/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-02-26:/2009/02/26/proud-mummy-moment-5656721/mummy2lucy2009-02-26T23:03:57+01:002009-02-26T23:03:57+01:00 <p><img src="http://data5.blog.de/media/550/3270550_707b15bdc4_m.jpg" alt="Thetford snow feb 14th 09 058" vspace="5" hspace="5"><img src="http://data5.blog.de/media/551/3270551_ebaeab04c3_m.jpg" alt="New lense feb 09 013" vspace="5" hspace="5"><img src="http://data5.blog.de/media/552/3270552_1898ce48fa_m.jpg" alt="lucy feb 09 009 - Copy" vspace="5" hspace="5"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/02/26/proud-mummy-moment-5656721/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-02-26:/2009/02/26/she-is-walking-5656639/mummy2lucy2009-02-26T22:46:42+01:002009-02-26T22:46:42+01:00 <p>Lucy has been walking holding on to hands for a little while now and has taken the odd step when she has been encouraged,today she just decided to go for it.<br> She stood with her back to the chair and stood for a little while contemplating her next move and she just walked,she walked across the room and then she just kept going and going and she doesnt want to stop.</p> <p>The down side is she doesnt know how to stop!!!</p> <p>She kind of does a run at the end just to propel herself to the nearest resting point but unfortunatly this could be wall or the edge of a table so for now I will be her little shadow ready to catch my wandering angel.</p> <p>I think housework,cooking and even visits to the bathroom will be off the agenda for me for the next few days,good job its nearly the weekend!!</p> <p>I am so very proud of my little trooper<img src="http://data5.blog.de/media/500/3270500_ccc31e3681_m.jpg" alt="landscape feb 21 09 052" vspace="5" hspace="5"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/02/26/she-is-walking-5656639/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-02-03:/2009/02/03/crash-helmet-5500267/mummy2lucy2009-02-03T17:52:28+01:002009-02-03T17:52:28+01:00 <p>I actually brought Lucy a helmet and I was sooo excited to try her out with it and you must admit she looks very sweet in her hat.....but!!!! it stayed on all of five seconds,in fact just enough time for me to get a shot of her in it and she took if off and will just have non of it.</p> <p>The helmet is from a company called baby no bumps and I think its a great idea for low tone children who are learning to walk but only if you have a baby that will wear it!!</p> <p>She is however being extra careful and is managing to stay on her feet longer and longer,maybe she realises I mean business now I have brought her her hat and is just making sure I dont keep trying to put it on her.<br> So there you go if you dont want your baby falling and bumping head then buy them a stupid looking hat and that will sort them out as they will do anything so as not to wear it<img src="http://data5.blog.de/media/524/3201524_1cea650b9b_m.jpg" alt="macro jan 09 011" vspace="5" hspace="5"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/02/03/crash-helmet-5500267/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-02-02:/2009/02/02/first-steps-5491089/mummy2lucy2009-02-02T11:05:43+01:002009-02-02T11:05:43+01:00 <p><img src="http://data5.blog.de/media/872/3197872_87729beb23_m.jpg" alt="23 jan 09 004 - Copy" vspace="5" hspace="5"></p> <p>Lucy has taken 4 very wobbly steps,well its a kind of lunge run but it was all on her own and she was very pleased and wants to keep on trying to have another go.</p> <p>I think its very early for a child with PWS but to honest I am in no rush for her proper walking till she can balance a little more.</p> <p>She has become very chatty just lately as well and she really lets you know what it is she wants and we can see the little diva in her now, Ohhhh dear we are in for a ride as she can really make a fuss.<br> I only wish we could have seen this Lucy when she was so tiny and barley able to move or make a sound,maybe I would have not been so sad and enjoyed the peace a little more. </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/02/02/first-steps-5491089/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-01-21:/2009/01/22/standing-up-5421074/mummy2lucy2009-01-22T00:13:47+01:002009-01-22T00:13:47+01:00 <p>What a little star!!</p> <p>I am honestly thinking of plonking a bike helmet on her head though,she is soooo clumsy and yet she insists on climbing.<br>Low tone and climbing are a bad combination and if you look closely in the duck post you can see her sporting another bump/bruise</p> <p>She is just a little trooper <img src="http://data5.blog.de/media/977/3163977_6c90f1a557_m.jpg" alt="Lucy and daddy 047" hspace="5" vspace="5"></p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/01/22/standing-up-5421074/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2009-01-21:/2009/01/21/our-new-family-of-ducks-5420916/mummy2lucy2009-01-21T23:35:50+01:002009-01-21T23:35:50+01:00 <p>We had a bit of a drama at the weekend and we ended up having to take Lucy to hospital.She became quite poorly very quickly and was in a lot of pain with her constant crying and then very quiet and floppy,we were seen straight away by the doctors and little Lucy was so unhappy and upset and it was such a worry not knowing what was wrong with her.</p> <p>One of the nurses gave Lucy some knitted ducks to play with (her mother knits them) and Lucy hung on to the baby duck through all her tears and pain,poor little girl.</p> <p>After a dose of calpol and 3 hours at the hospital Lucy began to get better and in the end was jumping up and down on her bed,Still with duck!!</p> <p>Thankfully it seems her illness was just one of those things and all that matters is that she is better now but the nurse insisted we take the duck family home as Lucy had taken such a shine to them all.</p> <p>I took a picture of Lucy with the ducks to send to the nurse as a way of thankyou,the ducks are doing well in their new home and Lucy is a fantastic adoptive mother hen<img src="http://data5.blog.de/media/924/3163924_1d2e449772_m.jpg" alt="Lucy and duck 09 013" vspace="5" hspace="5"><img src="http://data5.blog.de/media/925/3163925_7b3da0a26d_m.jpg" alt="Lucy and duck 09 016" vspace="5" hspace="5"><img src="http://data5.blog.de/media/926/3163926_7051719d76_m.jpg" alt="Lucy and duck 09 020" vspace="5" hspace="5"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2009/01/21/our-new-family-of-ducks-5420916/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2008-12-21:/2008/12/21/scoliosis-5252442/mummy2lucy2008-12-21T01:36:38+01:002008-12-21T01:36:38+01:00 <p>Lucy had her follow up appointment for her curve and she has a progressive scoliosis,she has gone from a 20 degree curve to a 24 degree curve in 3 months.</p> <p>To say I am gutted is an understatement but there is nothing I can do to change things so I am preparing for our journey in to braces and possible surgey.</p> <p>I have researched scoliosis and it does seem to be serial casting that works the best as the removable type braces can be ill fitting and not hold the spine in position but I want to try the removable brace first as I will never know if it will help unless we try it first,it seems the kinder option as we can still remove the brace for baths,messy play and during sickness and then I guess we will just have to see if it works for her,if not then I will have to put her through serial casting that involves a plaster cast full torso brace that can not be taken off at all,meaning no baths,swimming and free time just rolling around to play free of the brace.</p> <p>They have decided to leave Lucy 4 months before casting,just to see how the curve develops and during this time I am hoping for a miricle and the curve staying put or even better correcting itself.<br> Although I think this is a very unlikely thing I have to have a little hope to hang on to,always the optimist!!!</p> <p>I sometimes wonder if my little angel had not sat and done things so early that she would have a straight back now but how can I stop my little explorer,she is so determined and nothing will hold her back,not even a brace I expect</p> <p>I have put a picture of Lucys latest xray and a picture of the type of brace that she will be wearing,and of course we will be getting a butterfly design<img src="http://data5.blog.de/media/509/3082509_e867f1b171_m.jpg" alt="Dec 08 017" vspace="5" hspace="5"><img src="http://data5.blog.de/media/510/3082510_16a9216b5c_m.jpg" alt="back brace" vspace="5" hspace="5"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2008/12/21/scoliosis-5252442/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2008-12-12:/2008/12/12/im-hungry-5212749/mummy2lucy2008-12-12T23:55:38+01:002008-12-12T23:55:38+01:00 <p>I sometimes find I have paranoia about Lucys prader willi when ever anything involves food.She loves food,she will stare longingly at me if I am eating and she loves to try textures,tastes and will normally eat all of her dinner.<br> Her brother on the other hand has been the fussiest eater I have ever known and some days has hardly eaten enough to keep a fly alive but a strange thing has happened and Daniel is HUNGRY!!!<br> He has suddenly started eating and I wanted to document this as right now he is eating 2 lots of breakfast all his lunch,asking for snacks and eating tea also and if this was Lucy doing what Daniel is doing now I would be feeling THIS IS IT.....ITS STARTED!!!!THE HUNGER HAS KICKED IN!!!!</p> <p>I have to not be so paraniod about everything as maybe lots of children go through stages with food and if I am always thinking its a bad thing then I will be stressing way too much,so when Lucy is 2,3....4 years old and suddenly tells me she is hungry all day long I will have to look back at this post and remember Daniel and his sudden burst in appetite.</p> <p>Ohhh and by the way,Lucy didnt want her breakfast this morning,such a fussy girl <img src="http://data5.blog.de/media/933/3062933_3b694f24d4_m.jpg" alt="Cooking july 08 009" vspace="5" hspace="5"><img src="http://data5.blog.de/media/934/3062934_7b7123b860_m.jpg" alt="Cooking july 08 012" vspace="5" hspace="5"><img src="http://data5.blog.de/media/935/3062935_0b75ca5301_m.jpg" alt="Cooking july 08 015" vspace="5" hspace="5"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2008/12/12/im-hungry-5212749/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2008-11-27:/2008/11/27/a-a-a-aaaa-choooo-5122353/mummy2lucy2008-11-27T23:14:37+01:002008-11-27T23:14:37+01:00 <p>Yes its that time of year and we have had our fair share of coughs and colds and sickness bugs and poor little Lucy at the first sign of a bug seems to get a lot weaker faster and loses that strength and goes back to that little sad drained face.</p> <p>The good news is she jumps back as fast as she goes down hill and I now have that sparkly little girl back again.</p> <p>She had her first taste of snow at the weekend and although she liked to look at it she did not like having cold hands but no way was she wearing gloves.</p> <p>On the progress front she is gaining her balance little by little and she can now climb the stairs in the blink of an eye.</p> <p>She still has her spine curve and we are due to take her back in December for more xrays to see if it has progressed so i am keeping everything crossed that the curve does not get worse but it remains quite a worry as the dats get closer.</p> <p>I will leave you with a picture of my bright little button<img src="http://data5.blog.de/media/957/3022957_122036cb0c_m.jpg" alt="snow nov 08 014 - Copy_pp" vspace="5" hspace="5"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2008/11/27/a-a-a-aaaa-choooo-5122353/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2008-11-10:/2008/11/10/a-little-update-5014781/mummy2lucy2008-11-10T20:58:39+01:002008-11-10T20:58:39+01:00 <p>I dont get much time right now cos I have a very very busy little girl to keep tabs on,she is speed crawling everywhere and standing up all the time now and tonight for the first time ever stood alone for about 3 seconds,not long i know but she felt so sturdy and the little lady has made me a happy mummy once again.</p> <p>I saw the endriconoloigist last week and he was very happy with her progress to the point he said that she is just normal.Just normal? at one time I would of hated a comment like that but to hear him say this was in a way conformation to my own thought.</p> <p>I cant say what is round the corner but normal for now is how I feel.<img src="http://data5.blog.de/media/646/2976646_3ce0a00ced_m.jpg" alt="park nov 08 010 - Copy" vspace="5" hspace="5"><a href="http://www.blog.co.uk/media/photo/park_nov_08_013_copy/2976648" title="park nov 08 013 - Copy"><img src="http://data5.blog.de/media/648/2976648_864a09b41f_s.jpg" alt="park nov 08 013 - Copy" vspace="5" hspace="5"></a><img src="http://data5.blog.de/media/649/2976649_14908134fd_m.jpg" alt="park nov 08 013" vspace="5" hspace="5"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2008/11/10/a-little-update-5014781/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2008-11-01:/2008/11/01/spooky-squirt-4968085/mummy2lucy2008-11-01T23:33:01+01:002008-11-01T23:42:58+01:00 <p><img src="http://data5.blog.de/media/468/2952468_515bd2e14a_m.jpg" alt="haloween oct 08 014" vspace="5" hspace="5"><a href="http://" title="haloween oct 08 011"><img src="http://data5.blog.de/media/467/2952467_c80bcef8da_m.jpg" alt="haloween oct 08 011" vspace="5" hspace="5"></a>Well we had a great halloween,what a difference a year can make,it was this time last year when we were told that Lucy had PW and I can only say that this time last year was not the fun time that it was this time</p> <p>Lucy made quite a cute little witch and was not such a scarey skeleton and we decorated the house with banners and cobwebs and spiders and Lucy loved all the vibes in the house of fun,she is a true party girl for sure.</p> <p>She has quite a serious little face but behind that knowing little look she has a fantastic little personality and is copying us so much now,she babbles in such a beautiful way and I am sure she said tickle tickle this morning as I was tickling her under her chin.She plays with her brother by dropping her toys on the floor from her highchair so the he will give them back to her for to throw them further with a cheeky little grin.</p> <p>One thing I have always noticed is that she had no seperation anxiety when I left her in a room,she would just sit there watching but never complaining,it was always a little niggle of a worry as the thoughts of autism were spinning in my head but tonight trying to put her to down to sleep for the night I saw a very clingy,needy baby and although it took me an hour to get her to sleep as she would not let me leave her without screaming real tears I did feel like it was another plus sign that she is high functioning and not showing autism traits.</p> <p>She is getting so much more confident with her crawling now and has started to realise it is a good mode of transport rather than just a way to get to the nearest place to pull herself up on and has just started to venture from room to room,think it could be time to get some stair gates for our little explorer </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2008/11/01/spooky-squirt-4968085/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2008-10-15:/2008/10/15/where-am-i-1-year-on-4878036/mummy2lucy2008-10-15T22:31:23+02:002008-10-15T22:31:23+02:00 <p>I have been so busy recently and just never seem to have time to update but I just need to put in words how I am feeling after this first year,and what a year its been.</p> <p>When you mark a childs birthday it takes you back to when they were born and its a time to ponder on remeber and I remember my little boys birthday only a few weeks ago and it makes me so happy to remember his birth and the weeks and months that followed.</p> <p>With Lucy this was not the case and I remember laying in hospital that first night and looking at my tiny weak little silent baby and spoke out loud to my empty room,what is wrong with you little girl?</p> <p>The weeks that followed gave me all the answers and it was the first time I heard of Prader Willi Syndrome,we have since changed the name to prader handbag as we feel its a more fitting name for the condition.</p> <p>When Lucy was 2 months old I had a real meltdown and I can honestly say that it was the worst time of my life to date and I never want to go back there.</p> <p>Over the next few months I flitted between anger,sorrow,fear,greif,denial,joy,acceptance,and while I will never say I would not change a thing as I would take away PW in a heartbeat if I could but I would not change my beautiful Lucy.</p> <p>I can honestly say that at last PW is not in my every waking thought,and while I know I have a journey ahead I am ready for it,whatever it brings.</p> <p>I am a BIG thinker,its always like I will look for the really hard way round things in my head when its probably very simple but I am not a simple thinker so it has taken a lot of change on my behalf to not keep jumping ten steps ahead all the time,but amazingly I have reconditioned my brain and it has made a big difference to my life in general.</p> <p>So where I am is here,enjoying my family,loving every moment of here and now and just letting things happen as they happen without living it through in my head every second of the day and it all good,Lucy is AMAZING,she is so funny and clever and I think maybe I am the proudest mum in the world</p> <p>Just had to include a picture of Lucy with her first pigtails,how cute is she????<img src="http://data5.blog.de/media/384/2898384_23d113ad76_m.jpg" alt="build a bear oct 08 008" vspace="5" hspace="5"><img src="http://data5.blog.de/media/385/2898385_d25db36cdd_m.jpg" alt="build a bear oct 08 010" vspace="5" hspace="5"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2008/10/15/where-am-i-1-year-on-4878036/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2008-10-12:/2008/10/12/chatter-box-4861441/mummy2lucy2008-10-12T22:51:27+02:002008-10-12T22:51:27+02:00 <p>Just a little video of my clever chatter box.<br> I love it how she keeps saying yes to me when I ask her a question </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2008/10/12/chatter-box-4861441/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2008-10-12:/2008/10/12/lucy-mai-liu-is-one-year-old-4861257/mummy2lucy2008-10-12T22:01:56+02:002008-10-12T22:01:56+02:00 <p>Oh where do I start!!!!<br> What happened to my little girl as soon as she became one?<br> I am sure she decided just to save all this up for her first birthday but my beautiful,cute ,clever little girl decided to give up on commando crawling on the day of her birthday and get up on those hands and knees and do proper grown up girl crawling!!!</p> <p>And if that wasnt good enough the very next day decided it would be fun to pull herself up to standing ALL ON HER OWN!!!</p> <p>And then.........she started to talk and talk and talk all sorts of new sounds,beautiful little noises and now blows us the biggest kisses ever.</p> <p>I am still quite in shock as its all happened so fast and it seems there is no stopping her and she is perfecting her skills all the time.<br> At bed time she just doesnt want to go straight to sleep,not now she can stand herself up in her cot and will stand and let go of the bars and then plop she is down only to get up again and again and again.</p> <p>Its just amazing the changes in her now that she has found these new skills its like someone has switched up her light and boy my little lady is shining bright.<img src="http://data5.blog.de/media/394/2889394_6f3b0ac36f_m.jpg" alt="Lucys birthday oct 08 093" vspace="5" hspace="5"><img src="http://data5.blog.de/media/395/2889395_a6e379ace5_m.jpg" alt="Lucys birthday oct 08 065" vspace="5" hspace="5"><img src="http://data5.blog.de/media/396/2889396_71c6baea28_m.jpg" alt="Lucys birthday oct 08 079" vspace="5" hspace="5"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2008/10/12/lucy-mai-liu-is-one-year-old-4861257/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2008-09-19:/2008/09/19/bad-news-good-news-4751881/mummy2lucy2008-09-19T22:28:28+02:002008-09-19T22:28:28+02:00 <p><img src="http://data5.blog.de/media/159/2826159_3d627a010b_m.jpg" alt="scoliosis" vspace="5" hspace="5"></p> <p>Today we went to see the scoliosis specialist and just by looking at Lucy he agreed that she did have some curve,he went on to tell me the treatment of such curves and that he would be looking to plaster cast her in a body cast,a little like a vest but obviously not so comfy!!!<br> He also said that she would have a new cast every 3 months and would be in the casts for 2 years!!!<br> After this if the spine has not responded that she would have metal rods inserted,at this point my whole hearing ability had shut down and all I was thinking was run run,get away from this place.</p> <p>I was sent to xray and while we waited Lucy had a much needed sleep leaving me with just my thoughts to contend with.<br> I had thought maybe she would need a brace that you could remove and this I feel I could cope with as she would be able to time out to still ba able to perfect her crawl,with a plaster brace she wont be able to swim,take a bath,she will be itchy and hot and casts get smelly,my beautiful girl smells like flowers I dont want her to smell of sweaty skin.<br> Every thought went through my head even down to the crazy unimportant thought of things like she wont be able to wear spagetti strap dresses!!!!!!........thats the fashionista in me but that was one long wait and I just hugged my little girl as she slept and felt angry,she has enough to deal with.</p> <p>Xray time was awful as we had to keep her still,she was very awake and energentic at this point and she screamed her little lungs at being held down by mummy and another nurse.<br> Back to the consultant and there I see on his screen a little curvy spine,but not too curvy,even I could see it was not too bad and the consultant confirmed that right now her curve is mild and he just wants to see if it progresses and will see her in 3 months.......PHEWWWWWW I was so relieved.</p> <p>I know we are not out of the woods yet but I will do plenty of physio and maybe now she is starting to crawl it will give her even more strength,I even think that the curve has improved from when I first spotted it so maybe just maybe we wont have to go for plastering at all.</p> <p>Swimming and bath times will be so precious for this next 3 months as I now have time to prepare myself for the worst.</p> <p>On a very positive note Lucy sat herself up all on her own again tonight,clever clever little lady</p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2008/09/19/bad-news-good-news-4751881/#comments">Comments</a> </small> </p>tag:lucymailiu.blog.co.uk,2008-09-13:/2008/09/13/bowling-and-doing-the-commando-4724050/mummy2lucy2008-09-13T23:19:38+02:002008-09-13T23:19:38+02:00 <p>We have gone commando!!!</p> <p>Lucy has started to move forward on her tummy and is commando crawling actually going forward,very very slowly and will resort to rolling to her destination if she deems it too far to get to but if she has an object in site that is close enough but not close enough to reach she will do her little army stunt,when I can I will get a little video up,although I have just taken one off as they seem to slow the site down.</p> <p>Lucy has gone to bed a very tired little girl and this extra movement seems to wack her out even more so she will need to build up a bit more stamina now.</p> <p>Another first was her big brothers birthday party and she went 10 pin bowling for the first time although she didnt quite make a strike,mabye next time<img src="http://data5.blog.de/media/057/2809057_ca74bcd972_m.jpg" alt="daniels birthday sept 08 054" vspace="5" hspace="5"><img src="http://data5.blog.de/media/058/2809058_196d5780f8_m.jpg" alt="daniels birthday sept 08 055" vspace="5" hspace="5"><img src="http://data5.blog.de/media/059/2809059_8845740f9c_m.jpg" alt="daniels birthday sept 08 056" vspace="5" hspace="5"> </p> <p> <small> <a href="http://lucymailiu.blog.co.uk/2008/09/13/bowling-and-doing-the-commando-4724050/#comments">Comments</a> </small> </p>