Lucy Mai Liu

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!!!

Now I have a little walker I have a little chatterbox and also a little girl with some attitude!!

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.
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.

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.

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.
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.

Here are some pics of my little walker,she is walking almost more than crawling now clever girl

http://mygirlsanddan.blogspot.com/
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

Ha ha never thought I would say those words.
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.

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!!!

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.

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.

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

I think Lucy has been listening too much to her daddy as I am sure she is repeating his request for his beer.
I just think to hear her little voice (saying) stuff is just so cute.
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