Lorraine Davies's Comments

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At 7:17pm on January 3, 2013, kimmy watters said…

 dear lynne i hope you mind if  drop a note off to you my name is kimmy  watters i just would like to say your boys are very cute i am big support of  finding a cure to  dmd here  in the us.  how are your boys  doing sincerly kimmy

At 5:57pm on January 4, 2010, Lynne Taylor said…
Hi Lorraine
we had a lovely christmas thanks. Back to work today. All went well with the ventilation and it is very easy to get used to. We all feel like its always been here and Ross is feeling much brighter in the mornings.
wishing you a happy New year
luv Lynne xx
At 3:16pm on July 10, 2009, Lynne Taylor said…
Does Alex see an endocrinologist regularly? Hopefully it will just mean that the adrenal gland just needs to be monitored by regular blood samples. I would ask to be refered to the endocrinologist if you are not already. Ross has never seen one even though he has been on steriods for 7 years. I am going to ask to be refered to one at my next muscle clinic appointment. I went onto action duchenne website and they have some info on endocrinologist go to http://www.actionduchenne.org/duchennepedia/article/39/what-is-an-endocrinologist-and
Ross is really well at the moment, he was 15years old last month but thankfully not changed into a moody teenager yet!! Megan who is 10yrs old is moody enough so hopefully Ross will stay like he is. He is so funny he makes me laugh every day and such great company. I have emailed the committee members about contacting you re Calvert Trust holiday. If you do not hear let me know.
Take care
Love Lynne xx
At 6:21pm on June 29, 2009, Lynne Taylor said…
Hang on in there Lorraine
There are times when i felt like you as everything seem to happen at once and you end up with no energy left. It does get to a stage when you do stop fighting. When Ross started high school and we got the bathroom extension complete i finally found that everything was in place and I could relax and enjoy life again. I am at a good place at the moment. I know that there are difficulties ahead and it will become more stressful when Ross requires ventilation but at the moment I feel strong. Its always good to share so feel free to get in touch any time.
Make time for you because if you do not work nothing else does.
take care Lynne x
At 9:40am on June 28, 2009, Lynne Taylor said…
I would recommend the Balder powered chair as there are models that will enable Alex to stand up in so he does not have to use the standing frame. Contact Mike on 07825238670 or email him on michael@etacuk.com.
We are all well looking forward to our holiday to Brittany in August. Sorry to hear you are having problems with schools. We were lucky we have a special school for physical difficulties nearby but I do remember all the stress I had trying to get Ross into his local primary school. If you want to chat you will find my number on the DFSG magazine I am the contact family for region 8.
Take care
Lynne x
At 6:03pm on June 15, 2009, Lynne Taylor said…
Hi Lorraine
Just to let you know we have been successful getting full funding for a new powered wheelchair. As soon as they start fundraising in our area we can apply. Its a Balder wheelchair and is fantastic, the chair raises up, the back, reclines into a lying position and it manovers effortlessly. Well worth a look at. Ross has always had NHS wheelchairs which have been okay but you should have seen his face when he sat in a Balder. If you are interested let me know and i will give you the contact number of the rep.
Hope all is well with you and your family.
Best wishes Lynne x
At 9:49am on April 12, 2009, Danielle said…
My brother was a real wrestling fan too! We used to take him to the shows and we even found a way of sneaking back stage to meet the wrestlers. I have pics on my page of Frankie with the undertaker, and some WWE divas, lol although it looks like Alex would be too shy for that! lol
At 6:07pm on February 24, 2009, Lynne Taylor said…
Thanks for letting me know about MD Patrick Trusts grants. I have applied to them for a new wheelchair and i am waiting to hear so heres hoping. We are members of the DFSG actually we are the contact family for Wales. We went to Blackpool and the Calvert Trust with the group last year and had a great time. I really liked the Calvert Trust in Northumberland the scenary is out of this world, as it is in the middle of a forestry and reservoir. I thought i was in Canada! you also stay in amazing accessible log cabins with ceiling hoists, and wet rooms. The group are going again in May 2010 and we have put our names down already. I will put some photos on my page when i get round to it. I love all the photos you have added recently, particular the ones in Florida. We last went there in May 2007 with the charity when you wish upon a star and swam with the dolphins. You all seem to having a great time and remind me of my family - just getting on with it and having a good time
speak soon
Love Lynne x
At 2:06pm on February 19, 2009, Lynne Taylor said…
Hi Lorraine
Ross and Megan are off on half term too. We have had a good week went to see Pink Panther 2 yesterday it was really funny, Steve Martin is brillant in it. What a coincidence that you also have a westie. Our westie is called Mackenzie and she is 3 and a half years old. She is a little darling and although she was bought for Ross she is very much a family dog and loves everyone she meets. I think you were wise to wait until the physio comes to sort out the standing frame as you want the first experience of it to go well. Enjoy the rest of the week off. Speak soon x
At 9:09am on February 1, 2009, Lynne Taylor said…
Hi Lorraine
I often get mad at the wheelchair services and usually end up telling them what Ross needs for his wheelchair. They do not seem to be able to see out of the box and think all the boys are the same and need the same equipment. Not sure if Alex has his powered chair yet but if I can be of any help please let me know. Ross has had his for 6 years now and we have made numerous adaptations to it to make it comfy for him.
best wishes
Lynne x
At 2:50pm on January 26, 2009, stephen said…
Hi Lorraine, sorry to hear about Alex,s guinea pig hope he is feeling a bit better. Yes Alex does take steriods he is on Prednisolone 20mgs 10 days on and 10 days off We have not noticed any side effects really apart from Alex being hungry all the time so we are trying to watch what he eats because he loves his food [me too] and lately he a getting constipated quite often Dr Spinty has given him senacot and lactulose which makes him go but he still complains of pains , we have got to keep givin him them both for a week and see how he goes and let Dr Spinty know how he gets on.
At 12:23pm on January 23, 2009, stephen said…
sorry about the text they are the wrong way round having one of them days when you do everything wrong
At 12:20pm on January 23, 2009, stephen said…
It is better living in a bungalow but we do need some adaptations we are in theprocess of gettin a grant from the council to for this so we know what you mean about trying to get it and how much more everything costs compared to the grant
At 12:16pm on January 23, 2009, stephen said…
Hi Lorraine,
This is Jenny Alex's mum the meeting went okay hopefully everthing will be on the move now with the statement I just would feel better when Alex gets a bit of extra support in school. Alex does'nt need any learning support I think he needs someone there took help when he falls at the moment the other kids take a chair to him for him to climb up to get up but is getting hard for him.
At 12:25pm on January 20, 2009, stephen said…
Hi Lorraine,
We will have to find out about the chair you mentioned as Alex finds the chairs in school low and struggles to get up . The scooter sounds like a good idea too Alex would love that . Where we live now the kids dont play in the front as we live on a main road , we used to live in a close that sounds like yours where all the kids play out Alex loved that too but we moved to a bungalow he enjoys playing in the garden with Maggie. Sarah Savage also went to Alex's school to explain dmd the school is good it is just we feel he now does need extra support in school and it seams to take a long time to get it sorted as we have been waiting for him to be statemented for neary 12 months but hopefully it will be sorted very soon as we have an appointement in school this Thursday to discuss all what his needs are.
At 2:47pm on January 17, 2009, stephen said…
Hi Lorraine
The school Alex goes to is a good school but Alex is the only child with Dmd in the school so it is all learning for the teachers as none of them have experience in dealing with dmd but they are all very nice and the school has had alot of building work done recently to help with Alex's needs but everything takes a long time. Alex was diagnosed May 06.
At 11:59am on January 16, 2009, stephen said…
Hi lorraine,
does Alex attend main stream High school, our Alex is in main stream primary school he loves it but it is hard sometimes as Alex is the only child at the school with dmd and he doesnt have any extra help or anything at the moment we are in the process of getting him statemented which is taking ages but hopefully it shouldnt be much longer and he will get someone in school to give him a bit more support around school
At 2:01pm on January 14, 2009, stephen said…
Hi Lorraine,
Ive been reading a lot on how many parents give there kids supplements,ive read the parents study on protandom on trialserve forum and it seems pretty good,ive rang spinty nearly 4 months ago he said he d get back but hasn t .
I want to give it a go if its any benefit to Alex.Have you heard or tryed it
At 1:06pm on January 13, 2009, stephen said…
Hi Lorraine,
Nice to hear from someone in our area, We also see doctor spinty at Alder Hey.Alex is doing well also he is Liverpool mad he was made up to be mascot and meet the players . Yes we did write to the club we did wait a while but well worth it. Alex also loves all the wwe wrestling at the moment to and so does his sister Maggie although she doesnt tell her friends.Its good to here your Alex is still walking do you have any advice to give us to help ie diet type of exercice anything really as we have not really met anyone else with a child with duchennes.
At 8:11am on January 3, 2009, Sharyn Thompson said…
Hi Lorraine,

Welcome to PPMD. I have just moved to the UK from Australia ( going via SIngapore and Japan for 4 years each). This is a great site, I have been on here since just after James was diagnosed. It might be mainly parents and boys from the USA, but collectively they have an amazing wealth of information that I have found invaluable.

I have recently joined Action Duchenne as well and we plan to get very involved in fundraising there.

We are living in Kent, and still trying to find our way round both the country and NHS!! What grief!!

I am sure I will enjoy getting to know you better.

Sharyn.

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