#1
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hi guys, sorry in advance just need to off load!

After getting letter over 3 weeks ago to say they had found a genetic abnormality with alfie someone eventually rang us back to say they had but were still looking into it and needed my bloods to get all round picture and see if ive passed it on and be at least another 4 months before they can tell us more. I appreciate these things take time but so frustrated, thought we were getting some where at last. Also had visit from O.T and physio who now want to try puttimg him in some kind of restraint at night coz the was he's sleeping is no good for his hips (he has low muscle tone and is in danger if hip dislocation) don't get me wrong i dont want that but restraining him will make him so distressed and to top it off physio did some manipulation of his hips and ankle and he was in agony and now he wont weight bear at all, he's not in pain but unless bend his ankle certain way but it's swollen so looks like a trip to hospital tommorow, great as he's due at alder hey next week for assesment of his hips, legs and ankle.
sorry and thanks it's just been one of those weeks,

if anyone has any experience of bed restraints please let me know x x
were all angels in waiting!!
#2
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Hi, sorry I can't offer you no help here regarding bed restraints but I'm sorry you've had such a troubled week. 4months does seem an awful long time to wait, do you know why the long wait?
Things can be hard on occasions but well worth it!Heart
#3
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Hi really hope it flys in for you . I know how you feel in some ways , its taking over 2 years to finally get someone to start doing more test on my son . He is being sent to do electrical test on his legs for his low tone and double jointed and also being sent to genetic clinic . Been told it could be 9 months before the test on his legs are even done . Just seems like everything happens at once . Hope your feeling bit better its not nice seeing them in pain xxx
Single mum to a 14year old daughter and a son who is 3years old who has severe learning disability , hypotonia , hypermobility , visual impaired and sensory issues , he has showed me the meaning of life Heart and 3rd baby due 2nd of January 2012
#4
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Cant really offer advice about the restants but wanted to offer a big hug the waiting is very hard all i seem to be doing at the mo is chasing the hospital about different things it does get you down but just look at ur sons beautiful smile xxxxxxxxx
#5
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Sorry can't offer advise on Bed restraints but hope you feel a little less frustrated at off loading

Ilovecake - 4 months is about average in our local area for test results.

Benj had a bettery of tests under general anesthetic in March but we will not get the results until the end of July (if they are back?)
Good Friends are like stars;

You don't often see them ...
... but you know they're always there


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