Ladies Camera Club

10 Jun 2009

She has developed a new condition

So here goes......

Regular readers of my blog will know that for 13 years we have been trying to understand what the matter with Ellie is. Its been a battle fraught with tears and emotions and knock backs. It's made me lose my mind and my trust with the NHS. We have been to hell and back via Nevada with hospitals and out of over 170 hospital visits (well up until yesterday) all we know is that Ellie has weak muscles, has photo-phobia, cannot walk properly, is under weight and has a prolapsed mitric valve (in her heart). There is no name for this condition but we know it falls under Muscular Dystrophy.

Every time we go to the hospital we are met with "come back in 6/9/12 months" or "we cant help you" or "she will always be like that and we cant say why". And we are still non the wiser. This hurts. It means we can't have a relationship with like minded and like affected people who can support us. Trust me, when you need a lifeline with a child who has a rare condition - YOU NEED A LIFE LINE. You need a place to vent and share stories and sit with people who give a shit. So you tell your friends and you tell your family about the problems instead. And it doesn't affect them. They are not emotionally involved and they needn't be, really. REALLY.

But with me, especially, it is all I think about. Let me put it another way. The feeling is akin to people who have children that try to explain to others who do not have children about what its like dealing with child issues. Those without children think "oh shut up and deal with it" and those who have children feel hurt and dejected and then worry about having no common ground with these people. In fact its the same as the trip to Italy story that someone once told me about. It feels like that. But Im not moping to the extent where I want to kill myself. I guess I am sulking because its not fair. And that I feel choked and inflamed and feeling a tad sorry for myself. I think Im allowed to do that. Its what mothers of children do when they can't beat the system.

I know people have strayed away from us because I am like this but let me affirm that I am not neurotic about it. Just that sometimes and only maybe once a month I get really down about it. Its like my guard has been let down and Im sat there, raw and naked to everything and I want to lash out. It actually feels like I could kill. Im sure some of you can identify with that. I wouldn't kill, of course I wouldn't but it feels like I could just rampage the streets of Wigan and shake the shoulders of anyone that will listen to me. But even then that will feel like they are blind and can't hear me and that Im speaking in Swahili to everyone that can. Have you even dreamed like that? I have. It is making me feel anxious just thinking about it. UGH :(

So yesterday.
We thought it was going to be one of those hospital visits where the Doctor would examine Ellie and say "No, cant do anything for you again. Notice I say again? Of course you do, you are a very stupid mum who has no idea about anything. But I can see that look of desperation in your eyes and I feed off it. Its such a thrill to see you sat there, weak and wanting in the same breath. Did you even bring a child in here? Oh, surely not, I cannot see her and your imaginary problems with her. Be gone with you, please come back in 9 months as usual. Oh and by the way Mrs Wiseman, Im also a doctor of "making mummies loopy" - please book yourself into the priory at your own expense and tell them its all my fault".

But no.
Today saw us enter the room with the head physio, a student physio, a neuroscience assistant, a neuro surgeon, a neuro registrar and a neuro consultant. I thought "Lovely, come to laugh at me cry again - in battalions, yeah?". But the feeling was strangely positive and attentive and I looked at mark and thought "shit". Every ones eyes were on us three and not pointing or whispering like usual. They started out with a couple of question and they brought up the splints thing. Ellie was issued them in October but has never been able to wear them because they hurt. They were issued on the hope they would correct her gait. We hadn't tried hard enough, we thought but because Ellie was always crying when they were on, we didn't pursue it. We thought we were going to get into trouble for that. But this new neuro surgeon looked at her and told us that she would have never of benefited from them anyway because he thinks that she will always walk like the way she walks now. So in one way we felt relieved that we were not going to get into trouble but on the other hand I was inwardly going nuclear thinking "WHAT? She has to walk like this for the rest of her life and you think thats acceptable?" There is however, a glimmer of hope in rectifying the walking style only IF Ellies feet start to hurt and then it would be necessary to operate. So Im glad that she is not hurting with her feet right now and am hoping that she won't have to have an operation but what I can't grasp is that she has to walk like THIS (video link) forever? Please tell me you don't think its acceptable too?

Mark is really cool about it. He always is. He doesn't do emotion and I often think he is callous. He isn't of course but I don't know whether to deck him or love him for how strong he is being. Whether he is doing it for me or not, I cant believe he didn't get out his kalashnikov and blow that damning statement to smithereens. And although the sensible in me was grateful in lots of ways, I'm just finding this hard to accept like everyone else can. Am i wrong to be like this? AM I? Because I love my girl, I adore her. I absolutely cannot function without her but my job is to be the best Mum in the world and I cant be the best if I cant do anything for her. And yet all the while Ellie was taking all this in her stride. I think that's where my job as a mum wins prizes because she was/is not affected by all this. So I soak it all up for her. She is happy being her but I am not happy being me. There, I said it.

So anyway, people ask questions and poke and prod and then they did another examination where Ellie had to touch her toes. And that's when they told us the news. Just like that. Like it was just another little bit of information to chew us up inside. Ellis has onset Scoliosis and Scoliosis in children with MD is horrific. You have to read it to understand it, Im not explaining it because its plain old horrible and painful and ugly and she doesn't deserve to have this on top of everything else. The severity hasn't hit home yet because she is in puberty right now which means she is growing and growing accelerates the curvature - so essentially its not fully developed. But because she has weak muscles, the curvature will magnify and get ugly and painful. What annoyed the hellout of me the most was when the Doctors just let us go out of the room and say come back in October. Im like...... erm, explain, support, what can we do, help? We get ushered to out to our next appointment which is Endocrinology - we are almost late for it becuase they were running 1 and a half hours late before seeing us as it was. These two appointments work in harmony in respects of the scoliosis and growth, we learn now. As far as we were expecting yesterday, these were two separate consultations. One about muscles and one about hormones and growth. At least we can find out more in that office as we were armed with new info.

That appointment was more structured and informative and helpful. They suggest having her bone age assessed. This is because she is so small for a 13 year old and with the hospital being puzzled by her growth pattern, they need to xray her wrists. The wrist is the best place to ascertain bone age. Once this has been assessed they will then configure a sensible course of action............

In October
.
I KNOW.... months away. Shit, thats 4 months of curvature going on there in her spine.

But anyway there are options for her. She could either have Oestrogen to help strengthen her bones to cope with the curve OR they could give her growth hormones which will depend on the bone age results other wise the growth hormones will speed up the curve and cripple her. The worse case scenario is a brace or the extreme scenario is surgery to insert rods in her spine. AlI can say with them catching it early is that better NOT happen. But with her having MD this is likely.

As you can imagine I came home and researched and researched. Someone mentioned Callanetics and Pilate's which id love to study more of but with Ellie having weak muscles, Im not sure. I have two wonderful and helpful if not majorly supportive friends (Rosie and Sally) who have given me a focus and advice; I'll take that on board from the pair of you - thank you :) But all Im going to do is try and stop crying and hurting and feeling like the big pile of "avoidance" from everyone. After all Ellie is just happy in her own little world even though she doesn't have any idea of the full impact. I mean do you get down and dirty and tell her like it is and scare the crap out of her or do you take baby steps and mollycoddle her through it. Those kind of handbooks you don't get in the shops, do you?

You know, you can ask me to do anything. ANYTHING. I'll talk to anyone about anything. I will deal with confrontation, I will deal with bullying, I will tolerate sergeant majors and such ranks screaming at me, I deal with good and bad but ask me to do that to my own child....erm, NO!

Glad I got this all out, feel much better. Cos as you know a problem shared is a problem halved. Moving on now, lots to learn and little girl to hug.

44 comments:

Emma - A crazy crafter said...

I don't know whether it is good or bad that I am the first to make a comment, but here goes.

You have every right to be angry and annoyed at the system and what they are putting the three of you through.

I understand when you say that you need a support group and someone to sound off at who has the same thing or going through the same. Although not the same condition (obviously), my hubby is terminally ill and there is no support group for us/me to go and talk to/cry with. You can talk to your friends/family but as much as they say they know what you are going through they don't!!!

This is your blog and you should be able to sound of on here as much as you like. It is your diary to say what you want to and do with what you want. People do not have to read it if they do not want to.

I also don't think that it is an acceptable way for Ellie to walk either.

I hope this has not offended you in anyway and I feel for the three of you.

Take care and scream when you need to (it helps sometimes).

Emma xx

Anonymous said...

Im moved by your message. having children... you'd sacrifice anything!!!! anything for them...and you know im not great at advice, but i suggest the fluffy route. with a hint of possibilities.. i know your able to balance it out. for those that want to criticise, let them only if they have walked a mile in your shoes(1 of my fave sayings)and ignore the others.Take strength in the fact that there are others out there who feel for you and your lovely tight family, and for all you have endured so far and for all yet undoubtably to come, i for one will say a prayer for you, mark and ellie..i hope he's listening up there for once!!
love PBB xx

Rachel said...

It is so hard to see your own kids go through anything - you would rather do it yourself three fold I think we all know that and you are right it is crappy, as to what to tell her - what do you NEED to tell her. When does she NEED to know. Mum knows best - honestly - trust your own judgement I say

oh and logs of cyber hugs for you all..
Rachel

Cazzy said...

It truly ain't fair, on you, on Ellie, on Mark. I can see why you are so angry, I wish I could do something to make it better but I can't.
All I can do is offer a virtual big hug.

Cazzy x

Scrapdolly said...

Kirsty I can't pretend to understand. Not only do I not have a poorly child, I don't have a child period, but I hear your pain and feel for you and Mark and Ellie and all I can offer is support and prayers and hugs and you know where I am even if that means you just want to cry down the phone xxxxx

Anonymous said...

I so hope you can find the support you need. You are all so brave. "They " say God works in mysterious ways. He has me beat with this. Take care of each other. Sending (((((((BIG HUGS)))))))) HeyJude! xx

joanne louise cooke said...

I agree you have every right to feel angry, hurt, let down, and every other emotion that comes your way. My husband has severe MS, we were given his diagnosis by our GP who told in a most off hand manner as though they had just told us he had a cold, we were left with devastating news and no avenue to go down. Even now 12 years on things are still devastating us daily , the usual answer we get told when we enquire about the prognosis is no 2 people are the same, very helpful!(not!!!!!)
Our eldest son (11) is struggling to come to terms with his dads condition at the mo, probably his age but he has become quite withdrawn and semms to have lost that carefree attitude of late, and this breaks my heart.(looking into getting him some councelling to see if he will open up to some). But like you I feel like you have to try and sort out these things alone, and sometimes just dealing with the MS on a daily basis is enough. Sometimes it would be nice to have some questions answered without a blank face staring back!! keep strong Kisrty and keep talking it is very cathartic believe me I know, a problem shared and all that. Thnking of you all.xxx

Elisa said...

Oh sweetie, big big hugs.
I was reading this post (didn't read the headlines) and going please, please, tell me it is good news!

Ellie is so luck to have you and Mark, I think you are two sides of the same coin, and together you fight for her and make a little bubble of happiness around her.

I definitely can't tell how you feel, but having children, I know nothing can hurt me more than something that hurts my little ones.

big hugs

Rosie (Freycob) said...

You will cope with everything as well and wonderfully as you have always done darling! What you do for Ellie will be right for Ellie.

You have my support and love (and the bloody tears down my cheeks reading your post on top of our emails this afternoon!)

Hugs
xxxx

Vicki said...

Know that I am thinking of your little girl - a little girl who is loved so very much by her Mum. Be strong Kirsty - Ellie will always know that you fought hard for her and that she could never have hoped for a more wonderful, caring, loving Mum.

Jozza said...

Well my love. I don't know what to say. I can't help you. I wish I could. All I know is that video broke my heart. Your girl should not have to walk like that.

I am glad you are getting some answers but I understand your anger and your pain. Nobody wants to see their baby suffer :o(

I don't think you realise how strong you are and what a great family unit you have going on. Mahoosive hugs to you all m'dear. xxx

Scrapowl said...

Most of what I am thinking has already been said but that doesn't stop your 'twinnie' sending love and thoughts too - you can feel your love for Belle on your pages, she has a very special Mum & Dad and that will and does count for a lot. Never give up hope. Loads of love Raine xx

manicstamper said...

Kirsty.........I don't know what to say after reading your post so I will just let you know that you, Mark and Ellie are in my thoughts and prayers.
Hugs
Sheila-x-

Deanne said...

I dont know what to say, I keep writing and then deleting! I feel for you, mark and ellie. i just hope that you find more answers to help your gorgeous girl and you through this.
I'm here for you.
hugs and sparkly wishes
Deanne xxxx

Anonymous said...

Sweets, I am going to write to you when I get home and have time to go over this with Scott. I will send an email to you. Just wanted you to know that I'm thinking of ALL of you and sending my love and hugs.
I'm here for you..as I always have been. love, Ruth

Jan C. said...

Wait, what? They can't tell you exactly what her condition is, but they feel confident in crushing you down by predicting the absolute worst? Uh uh. Sorry. Visit the docs and work with them. Take everything helpful they might be able to offer. But don't buy into the idea that her future is going to be awful. It's not going to be easy, but obviously no one really knows what's going to happen, and that leaves the door open for her quality of life to exceed everyone's best guess.

And don't sell yourself short, Kirsty. God assigned Ellie the perfect parents in you and your husband, because she needs parents who are fierce and brave and relentless in fighting for her.

My sister had a stroke when she was 21 and was left paralyzed down the entire right side of her body, but mental capabilities fully intact. She was not expected to live past the age of forty. My mom never gave up. She worked with Jane at home doing all kinds of exercises. They took her to therapies to keep her muscles from atrophying. They tried new things (patterning was new at the time). They just never gave up. Jane is now 58, and damn if she didn't wiggle her right foot one day.

Doctors know a lot, but they don't know EVERYTHING!

Patricia said...

Sweety, if there's anything and I mean ANYTHING i can do for you and Sweet Belle...just ask. If you want to come to Canada and get a consultation here, you will have a place to stay and we will do research together.

Lots of love

Patricia

bettyann said...

Dear Kristy my heart goes out to you and Mark..Ellie is the most lucky girl in the world to have such a fierce fighter for her...you vent all you like..we are here to listen..you take care now

Sue Abbott said...

There will be many people who have read your blog, who, like myself just haven't got the words to express how much we would have loved something positive to come from the hospital visit. I felt so down myself, just reading about beautiful Belle's plight, so how you must be feeling after so many years of 'getting nowhere' is beyond me...........
Thinking of you all.
Sue x

Zoe said...

I just don't know what to say other than you have the most beautiful daughter who in turn has wonderful parents. It sucks what you've all been through but with all the love she has around her she's in the very best possible place she could be. ((Hugs)) x

Amelie said...

I wish I knew what to say as usual. so i'm just going to send some love.
and mention the alexander technique just in case theres anything in it that might help or you havet researched it yet.
My brother has a bone disease called multiple exostosis, and its something hes looked into to help him walk/stand/stand staighter (hes on crutches sometimes.. sometimes not)

xxx

corinne said...

My heart bleeds for you my friend and even though I know how it feels to live with a special needs child I can not put myself in your shoes. Know that I love you lots and my shoulders are always here to cry on even if they are a pond away :)

corinnexxx

beksynormz said...

I just wanted to say how much I feel for you guys. I have two nephews with Duchenne MD so I know some of what you are going through. Hugs, Beki x

Anonymous said...

Hi Kirsty,
I know we haven't been in touch massively but since I came on twitter I have at last been on your website... saw your post about the hospital & Ellie, I've had to leave my desk as the tears are running down my face! I know you'll do, say, act just as Ellie needs, and no - I do not think it's at all acceptable, in 2009, that nothing can be done to help Ellie with her walking! although different....they are producing artificial limbs in Rajasthan for £25.00 with the most limited of resources!!! surely, with the amount of investment the NHS have, & the chairtable donations to childrens charities - SOMEONE could provide you with a solution!
lots of love anyway, to you, Mark & Ellie,
Tracey xx

Anonymous said...

What can one say to someone who's world has been shattered not for one time, but several times...........


Just a big hug and lots of warmth and strength from the Netherlands.

Ingrid xxx

Debo said...

i just don't know what to say - but I didn't want to just leave and not say anything.
I want to send you support and strength, although you seem amazing anyway.
I don't know you but I always read your blog. You make me laugh, you make me cry. Your blogs are honest - and there's no point otherwise.
It is NOT acceptable for Ellie to have to walk that way. It is NOT acceptable for the doctors to give you a piece of information like that and then leave you with it alone for 4 months.
It IS acceptable for you to feel the way you do!
And Ellie's lovely character is proof that you are doing everything right for her as parents.
Don't be so hard on yourself.

Kate said...

I understand no-one knows how you truly feel but my heart aches just thinking about your little family. Keep strong and have a good cry on Eddy when you need one.

Kate xXx

Paula - Buenos Aires said...

As you say I can only begin to grasp a faint idea of what you are going through. My heart goes out to you and Ellie.

Brook said...

I am so sorry. I am only dealing with a fourth of your problems.

The only thing that I can say, is that you are doing an awesome job as a mom. The fact that Ellie is happy and taking things in stride is testement to that fact.

She is happy being herself.

I know it is hard to look at your blessings when you are constantly bombarded with news like this and callous drs. But...Ellie is happy, bubbly and doing well considering her trials.

She deserves better, you deserve better...but she is enjoying her life and there are so many children out there that have no joy.

You guys are always in my prayers.

Jen said...

Kirsty. Just wanted to send hugs. I've always said (well, since working in a hospital) that I'd hate to be a doctor - there are too many things to get wrong or not know.. and I wish they DID know; that they DID have answers for you. And it SUCKS that you are left in limbo, but I truly believe these people have not done years of medicine to just mess patients about. I believe that sometimes they DON'T have all the answers, and I'm grateful that doctors qualifying now are taught more about how to break bad news and how to empathise with the patients. In fact, I am a case study several times a year in medical exams, and most of the young docs coming through do seem to have more empathy than older ones and long may it continue. Anyway, I'm rambling now m'dear, but I know Ellie was born to absolutely the right parents. Parents who will fight for her and look after and love her like no one else could. And the fact that Ellie seems to take it in her stride is testament to those parenting skills. So, don't be so hard on yourself sweetie. Vent as much as you like, we don't mind. But take some comfort from our virtual hugs, ok? Lubs

SharonL said...

Dear Kirsty .. hugs and lots of them for you.
I wish I had the right words .. I dont, I only have empathy and feel for you three and what this means for Ellie.
I can only say it is ok to be angry and want to lash out - these are perfectly normal feelings and especialy so after the way you have been treated by the NHS.
Hold on to some of that anger and use it where you need to - not on those that love you but the people that should be doing all they can to help Ellie.
I expect all of us that read your Blog daily would wish that they could change this for Ellie ... take comfort in knowing that you have love and support from us all.
Thinking of you and sending cyber hugs, love and peace
SharonL, Bristol.xx

Bettythebaglady said...

Dear Dear Kirstie and Ellie and Mark. I have tried to say something, anything to show how much I feel for you.My Dad had Manic depression and my brother has chronic schizophrenia.We cannot possibly understand those conditions unless we have them and they cannot be taken away by anything, only controlled by drugs and people think you look "normal" LOL. Dad used to say "they can cut off my legs without anaesthetic if it would cure this". Somehow he did manage to live his life and he had lots of love but it's sometimes harder to stand on the outside of something and know you can't put it right no matter how much effort you put into it. There is much love coming your way from many people and it goes without saying it's for Ellie and Mark too and your families. BettyXXX

nailgirl said...

Kirsty, I feel your pain as a mother to a daughter who is the center of my world! I cannot imagine everything ya'll have gone through though. I pray for your family regularly and I always love seeing pictures of Ellie! She is absolutely a beautiful child!! God Bless her and you! Just wanted to let you know you and her are in my thoughts almost daily and I wish you all the best.

Houston said...

I can understand the anger and please know that I am always hear to listen and help in any way that I can. I'm angry with you and for you, it's such a frustration to just read the story and I am certain it is far worse to be living it. You are a great and uncrazy Mum, know that and never forget it. Sending lots of love <3

Gez said...

Hi Kirsty

Hope you had a safe journey home from the Craft Range. Thank You for a great demo! I NEED those Nesties!!

Sending great BIG hugs to you & your family especially Ellie. You will be in my thoughts & prayers.

Good Luck.XXXX

Gez.xx

Kiki said...

I just want to give you and Ellie a big bear {{{Hug}}} x

Sharon Speakman said...

Oh Kirsty. I don't know what to say to you except sending you big hugs and a shoulder to cry on whenever you need to get out! Take care sweetie, and remember friends are never far away! Sharon x x x

suzanne said...

I would not view the brace as a worst case senario. I know a friends of a friends daughter wore one for a couple of years as she has early scoliosis and she is much better now. Keep your head up there are many people thinking and praying for you all.

Sam said...

As I sit hear crying at the unfairness in the world, my heart goes out to you all Kirsty.
hugs, kisses and every good cyber vibe that I could send to make it all better!
take care and keep your chin up hun
xx

Angela W said...

I understand how you are feeling about the NHS. They shouldn't keep putting you off, they should be working to figure it out. My heart hurts for you, Mark, and Ellie. All I can say is keep loving your dear girl. As parents we tend to take anything that happens to our kids to heart. What can we do to make them better. I know I would rather lose a limb than to see my child go through such an ordeal.

This is your blog, Kirsty. You do what you want, say what you need to. If people don't want to read they don't have to. You have to have an outlet, and we are here for you. I know we are not going through what your family is, but we love you and are here to offer what support we can.

Love you much

D@nielle said...

sweetie, you can lay it on us anytime that's why we are all your friends ! Again big hug, i cannot imagine how your heart must be hurting but you are strong (the other 3 weeks of the month) and you will help her through anything she will have to go through, I am certain of it !

Anonymous said...

So sorry to hear this, I have no words for it, just wanted to let you know I do care and I am thinking about your family.
You sound like a wondeful mom to me (reading your blog for more then two years now), so please don't be so hard on yourself!
My son has a Muscular Dystrophy condition too (only his arm though) and his doctors don't have the answers either, but they use much nicer words, and more time, to tell us.

Vent all you need to, it is your blog dear.....

Big hugs and xxx from the Nethelands,

Henriëtte KB

twinkletoe said...

Kirsty, Big hugs from Los Angeles. If you ever need to come to LA for a consultation at UCLA or Childrens hospital you will certainly have a place to stay. I feel like you are my bestest friend. Love Pat XX

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