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February 10, 2012

Another baby girl goes to school...

I am HOME alone....
 and missing my Baby Girl and her Big Sister..
 The little giggles and Mummy? questions are not as often...
 Cos my Baby started school...yep she is officially a big school girl...
She has gone from being my baby to big girl so quick
She's been the cuddly one (was whiny too a lot of the time..I will explain)
She so loves to follow Big Sister around...
She is always happiest though on Mum or Dads knee...
 Never wanting to be to far from me...it is so sweet  & now we know why!
 Especially when she says..'oh Mum I need you'..LOL. at 5yo
 sometimes it annoyed me when I was cooking or such ,
trying not to trip over her in the kitchen,
or knock her over when I turn around...
 I have many little burns from trying to
avoid burning her with hot pots in the kitchen..
 Annoying too when I am carrying 10 bags of groceries home
and she needsto be picked up
and carried all the way home in tears... 
I asked Why??? a lot of the time
 Why was she not like my other kids?...
Why was she so clingy?...
Last year after hearing for the gazillionth time 'Mum my knees hurt'
 I decided it was too much.....
I got serious after complaining often to a local doctor that I needed more help
 I am sure he thought I was Neurotic....
I took her to the Doctors all the time as a baby 
and had been telling them she complains about her knees.
 Oh it's growing pains!..what in a 1yo ( she just cried lots then),
a 3yo or 4yo..no way... can't be I thought..
Not that I wanted something to be wrong with her BUT
 this is not right...no way should she be complaining...
or me giving her paracetamol to much just to stop the crying...the silent pain
 I have had four children and not heard this in the others.
I have a son who suffered growing pains but not like this
 he complained at night and sometimes when he was tired after sports
 But not like this...I carried Miss K all around all the time..
 she complained day and night
 When I went to the letterbox she'd say " carry me inside my legs hurt'
 This is not a put on or attention like one Pediatrician liked to tell me.
 This is a little girl who is so funny and cute who complained once to often.
 After Numerous Ultrasound's, Xrays and scans...nothing... still lots of pain.
 It's funny how things turn out though...meant to be...
 I was walking up to school one day with another mum from school who was
always hearing 'my legs hurt' and she suggested I look at Hyper Extended joints...
 she is a Remedial Therapist and wondered what could cause the joint pain.
  As we had another Pediatrician's appointment the very next day I said
I would suggest it to them...
and I then googled it as soon as I got home as I do when 
I am unsure of anything...LOL...
I went to the new Pediatrician, she sort of laughed, 'no no' she said......UNTIL
 she checked Miss K's joints... she had 32 Hyper Extended joints that she could note...
 Oh Dear...way too many, so then we had to visit Robyn...
 yeah and answer to this soreness...
Robyn is Miss K's Physio.. 
an amazing lady who understands the condition Miss K has..
 It's called Ehlers Danlos Syndrome... it's inherited and can cause all sorts..
 DH and I are going to see the geneticist in May
to have some biopsy's done to find out more about this condition.
For now Miss K has not as much pain.... and loves School....
She has exercises to do from Robyn... which helps her core muscles...
 Why am I telling you this... Miss K started school...yeah....
 and after the last few years trials with her legs..we are excited for her...
she made it to school and is the big girl she aspires to be...
she still has a little pain but we do the exercises and she feels ok again...
 Will it go away...NO but we know have things in place 
so she will grow to be healthy happy young lady
 and hopefully not suffer for it...
 Thanks for getting this far.... and listening to me ramble ..
 Off to pick up the Misses from school and Movie night tonight...yeah
 I may do some stitching after... I so need my mojo back!
Happy Stitching
 Hugs Dawn x x x x


20 comments:

Kris Meares - Tag Along Teddies said...

Hey Dawn! I sometimes wonder at our mainstream medical system ... so often, medication is given when it's not really the best answer and help is denied when it is genuinely needed!! I really wish more doctors would take a holistic approach and incorporate massage therapy, herbal treatments and physio into their treatments. So pleased that you finally got someone to "hear" was your poor Moppet was telling them and hope the improvement continues now you have the correct diagnosis and treatment. Also hope your mojo comes home soon! :0) Bear Hugs! KRIS

Maria said...

Oh No Poor Miss K was in pain all those years and no-one listened except Mum and Dad. I am so pleased Miss K is having treatment and the pain in her legs is not as bad.
Big Hugz
Sweetheart. XXX

Susan said...

I'm so glad your little sweetie got help for her sore legs and is going in the right treatment path now. I understand where you were at with her doctors. For several years I was told that my daughter(age 14 at the time) was depressed and nervous and that if she just took these pills, they would make her better. The pills caused her to have mini seizures. Then one day, we got to see a neurologist and found out that she has Tourette's Syndrome.(hereditary) The twitching and clearing her throat were all signs of that, and not of attitude or depression. Like Little Miss K's diagnoses, there is not cure, but we sure know how to deal with it better and are always on the lookout for better and new information on this syndrome. My daughter will never get her dream of joining the military and getting to wear a nice uniform, but she worked hard and now wears a cadets uniform until she graduates from the Academy for Correctional Officers. She's happy with that and no one discriminates against her there. Proud of her and your little Miss K too! Our children are awesome and can do amazing things!

Kayly said...

I'm sorry your little one has this syndrome, but glad it was finally diagnosed. Unfortunately, I have heard many similar stories where the medical profession brushes Mum and Dad off as just worriers. Often a chance remark, as in your case from the fellow school mum, is the key to the door. It annoys me that the new paedatrician nearly did the same brush-off.
I wish her all the best.

Jodi said...

Mummy & Daddy know best. I know of lots of cases of medical professionals just not putting the pieces together. There are so many illnesses and so many symptoms and one missed symptom can give you completely the wrong diagnosis. I don't deny their job is very complex and challenging but us worried parents are our kids best advocates and know one will ever know all of them like we do.
So glad things are getting better for Miss K. I am sure she will move forward in figurative leaps and bounds as she gets the right help.

Mad about Craft said...

It sounds like a scary syndrome. I hope your little one now gets the support she needs and things turn out to be on the milder side of the syndrome.

Terry said...

I'm so sorry she has this pain, but I'm glad you've finally figured out what it is. Hard to believe how fast our little ones grow up!

Josie McRazie said...

it is frustrating knowing something is wrong and not being able to do anything about it! Just glad you were able to get a Dx! (I am still waiting on one for me and it is baffling my Dr's!!)

Allie said...

Wow Dawn! I am SO GLAD, after all this time, you got an answer...and help...a mum knows, the doctors don't listen. You have to work and work to get them to listen to you. I'm so happy that she has help now, that you know what you're dealing with, and that she's able to start school! Big big mum-to-mum hugs for you, sweetheart.

Allie said...

ps - your girls are so beautiful - give them both big hugs from me!

Anne Heidi said...

Oh I am so glad you finally got an answer- but I can't believe it took them so long. Poor kid! I hope her exercises will help her pain go away!

Wendy said...

My heart goes out to your sweet little one and hope she continues to feel better as you're able to find remedies for the pain and discomfort. She looks so proud standing there next to her big sister!

Debby said...

It is so frustrating when you have something wrong and can't quite articulate it, but to know your child is suffering and you can't help or find answers is just painful for a mom! I'm so happy that you "found" someone who understood and was able to point you in the right direction. God brings people into our lives for a reason; I know she'll learn to live with this and be a wonderful, happy, encouraging young lady as she grows.

Quiltin' Sandy said...

Why is it that some doctors won't listen? Mums are the best judge of if there is something wrong with their child. I feel so sorry for you Dawn, and your sweet little girl that this was left undiagnosed for so long. :(
Hopefully the physio will continue to help her. lots of hugs to her and yourself too. ((((()))))
When I had my first baby, she got sick when she was about 7 weeks old, we rang GP and he actually told me that "young mothers tend to panic too much, she "only has a cold"- keep her nose clear, etc"
Two days later she was worse, we called the doctor again and a different GP arrived ( from the same practice) He took one look at my baby and said " Why on earth haven't you called a doctor before now- this baby is seriously ill!!!"
She was in an oxygen tent for a week, with golden staph infection of her lungs, at one time they told us they didn't think she would survive. :( So I don't always have a lot of faith in the medial profession. Hugs, Sandy.

Quiltin' Sandy said...

I meant to also say- what a lovely picture of your 2 beautiful little girls!! :D

barb's creations said...

Glad to hear Miss.K has been diagnosed finally and is starting to feel better with physio,isn't it amazing all the kaffufle we have to go through to get Dr's to really listen to us.My sister went through the same thing with her youngest boy and at the ripe old age of 9 he was finally diagnosed with aspergers syndrome,it took her 9 years and like you she knew there was something not quite right and fought to get his diagnoses and get him the help he needed.You're a great mum for never giving up on your poppet :) Barb.

Marilyn said...

Oh Dawn, I had missed reading about Miss K and the difficulty she has had. So pleased you are now on the right path to helping her, and have Robyn working with her. It is such a relief to find the cause when we know something is wrong with our children.
What beautiful young girls they are. And now Miss K is definitely a big school girl.

Liz said...

dawn-have only just caught up reading about your dear little one with her syndrome. A similar experience-After 2 children I noticed a big diffrence and told my Dr.His response"you have 2 others at home and you are just panicking."After we found out his brain was not growing we had to comfort the DR. Yes He did learn from his mistakes.I hope all goes well with the exercises and she gets pain free

ccc said...

Hi Dawn I just read your post about your daughter's condition. I know how you must be feeling as my daughter was diagnosed with the same condition about 2 years ago. As mums we need to trust what our children say and believe our feelings. My daughter has many more good days than bad and physio does help. I hope all goes well for her.

eileenfoto said...

Gorgeous little girls !! Glad you are on the right track now with your little one.

Hugd x x x