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 My daughter Ela

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Katela

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PostSubject: My daughter Ela   Wed Nov 04, 2009 3:20 am

Ever since she was born she has been floppy. And after many months of telling HV and GP's that she is not feeding properly and is not showing any signs of sitting crawling etc. They decided to refer her on to the paediatrician. Where he found that she had clicky hips, she had hypotonia (low muscle tone) and extremely hypermobile (bendy). And she is globally developmentally delayed.

So she is now under Orthopaedics with her hips as when they did the xrays and ultrasounds she has very shallow sockets which she has recently had them checked and they are getting better. And she is also under the neurologist who has put her for loads of tests, so far she has had blood tests, an EMG, nerve conduction studies and an MRI. Now depending on those results there will probably be more tests. She also goes to the eye unit for regular checks as they say she is long sighted which is normal but because of her muscle tone etc they want her to have regular eye checks. She goes to physio and occupational therapist aswell, which have helped alot. As since she started she has sat up and she pulls herself up. She has a special chair so she can sit and have the support she needs. Piedro boots to support her ankles and she has a Kaye walker to help her walk. She can take a couple of steps unaided now.

She is a very happy little girl and is very determined. She does get very tired very easily and when she is very she can't even sit up she just lies there not being able to move. She has surprised all the professionals she is under with her determination.

So now we are playing the waiting game to see what these tests will show and see if we will get a diagnosis. And it's this that is the difficult bit as at the moment we take each day as it comes. All we know is that she is improving but we don't know whats going to happen in the long term.
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tina
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PostSubject: Re: My daughter Ela   Wed Nov 04, 2009 3:57 am

aww hugs babe prob is some hv dont listen i had this with mine with alicia i said she was special needs she wouldnt have it now shes undergoing assesments 4 asd adhd epilepsy speech and alnguage 12 months behind doesnt say much doesnt like to eat she has more issues just so hard get these proffesionasl to listen im so glad yr lil girl is being seen now and im so sorry they didnt listen to u keep us updated hunny xx
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Katela

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PostSubject: Re: My daughter Ela   Wed Nov 04, 2009 4:03 am

Will do, she also bruises really easily and she has also been put on the special needs database. I even said to the community paediatrician that when I spoke to the GP's and HV I felt like I was over-reacting and there is no problem and she was lovely and reassured me that I wasn't over-reacting and there is a problem with Ela we just need to find out what's causing these problems but it may be a long process. So far has taken a year.
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PostSubject: Re: My daughter Ela   Wed Nov 04, 2009 7:36 am

hi babe yeah these processes do take such long time and is very frustrating bless her and you too hugs babe here 4 u xx
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PostSubject: Re: My daughter Ela   Wed Nov 04, 2009 11:03 am

aww hugs my heart goes out to you.
Cant imagine what you must be going through. Waiting is always the heart part. Its good news that they have listened to you and something is being done.
Try to be strong and hun im here for you should you ever need to off load. Dont hesitate.
Huggs and kisses for Ela.
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PostSubject: Re: My daughter Ela   Wed Nov 18, 2009 4:23 am

Big hugs if you need to talk i am here for you

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PostSubject: Re: My daughter Ela   Fri Jan 08, 2010 4:57 am

Sorry haven't updated in a while but we been so busy. Ela has been for an EMG single fibre test which didn't happen as they on sedated her and she still wouldn't let them go near her face with the needles. So she is going to have to go back at some point and have it done under general anaesthetic. And we also saw the geneticist who had just received the results from the chromosome and array tests. And they found that Ela has a small deletion in chromosome 16p. Which when I read about it, it explains alot about all the problems she has had since she was born it described Ela so well. So even though its confirmed she has a problem that can't be fixed we are pleased we have some answers and we now roughly what to expect in the future. Simon and I had to have blood tests to see if either of us have this deletion aswell.

Ela is still happy she had gastroenteritis over the new year and she was so weak all she could do was lie on the floor and watch tv it was like she was a newborn all over again. I even tried to sit her in her chair and she was so floppy she couldn't hold her head up. I hate seeing her like that. But she's on the mend now and has just started taking a few steps again so that is good.
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PostSubject: Re: My daughter Ela   Sat Jan 09, 2010 1:14 pm

lts good you know what it is in away as like you saidnow you know what to expect and are ore prepared in what to expect, how to deal with whatever is thrown in your direction.
Here for you hun. x
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