Lucy Mai Liu

Well we finally got to Sheffield childrens hospital and had our consultation with the spinal team there
We have been given more information and they seem to have a lot more relaxed approach to the whole thing

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.

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.
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
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

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.
We go back at the end of the month to get her fitted

I cant belive how fast Lucy is growing up,its like she turned from baby to little girl almost overnight.
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.
Now I find I am adding time on,she is 22 months yet I always say she will soon be 2!!

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!!

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.

Lucy had her first xray in her brace and as you can see its holding her back pretty straight.

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.

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.

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.
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.
She had remembered it,i was amazed,I really underestimate her at times,my clever little girl

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.

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
http://www.londonscoliosisclinic.co.uk/index.htm

Here is a link to the web site.

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.

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

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.

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.
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.

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.

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.

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.

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.
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.

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!!!!

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.

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.

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

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!!!

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.

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

I have the news that i have been dreading and Lucys back brace is ready next week!!

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.

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.

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!!!
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

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.

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.

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.

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.

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!!!

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.

I feel very lucky to have such a special girl,she amazes me every day.

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.

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.

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.

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.

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!!!

I honestly dont really remember what he said to any degree as I was so shocked at Lucy and her paddy.

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.

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.

For now I will leave you with a picture of Lucys killer eyelashes,WOW!!!