#1
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Hi

Where do I start,
I am a Mother of 2 Matthew 4 1/2 and Cameron 16 months.

Matthew was born at 32 weeks and weighed 2lb 5oz he was very strong and gave a good fight. Matthew had a heart condition which ment his heart would beat at 350 beats per minute, he had medication and grew out of this at a year old. Matthew wouldnt put on weight as a baby and still he only weighs 21lb (his brother has over taken him) Matthew has just been diagnosed with Albrights hereditary osteodystrophy. we know nothing about this condition yet ecept that only effects 3 in a million people. we are also pushing for him to have an autistic assesment done, (i think they have refered him now.)

Matthew had 2 operations last year, he had a build up of fluid at the top of his spinal cord which if left would effect the nerves and could parralise him, in the first operation they removed some of the skull to open up the fluid canal around the brain, (this operation didnt work) the 2nd operation was to remove some tisusse from the back of the brain again to open the fluid canal, we have an MRI sacn on thursday and then a consultant appointment at the end of the month to see if this has been a sucess!

Matthew has behavioural problem, due to his servere learning difficulties and the fact that he does not talk (matthew bites and headbangs) we are teaching him makaton sign language! He attends a special needs playschool and is going to a special needs school in september.

Matthew is normally a very happy person, giggling and making a high pitched eeeeee sound, he loves to bounce (should have called him tigger!) but on a bad day matthew is very hard to handle, as he is so strong.

Cameron has not been affected by the condition as far as we are aware and is very laid back and calm. although he suffers from wind at night and is awake from 1 till 4 most nights!

If anybody has any information on albrights hereditary osteodystophy it would be greatly recieved.

I have a great Husband who is very surportive and understands when i have had a bad day, and my family are always there for me (sometimes i dont know what i would do without them) We dont have many friends but the ones we have a very special.

Thankyou for reading my story
xxx
#2
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hi babyplumber, welcome to the site
sorry dont know anything about albrights hereditary osteodystophy but can relate to the eeeeing and bouncing as my son Matt still does this and is nearly 17 (worry he going to knock lightshade off hehe) keep an eye on his ankles as due to the bouncing matt had to wear pedroes and we didnt notice till he was 14!! matt used to bite and headbutt when he was young as well but this calmed down a lot when he started to understand what people were saying to him. Pecs is also a good tool to help with the frustration of getting across what they want to say, we are in process of getting a prolo2go which is similar but on an ipod as matt works better with electronics than books Big Grin
corinne
There comes a point in your life when you realize:Who matters,Who never did,Who won't anymore...And who always will..
So, don't worry about people from your past,there's a reason why they didn't make it to your future.
#3
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Hi Corinne

thanks for your reply, can i ask what are Pedroes? and what is pecs? i have never heard of these thanks
#4
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pedroes are a special shoe/boot, they are fitted by orthotics at the hospital. our son has them, they look no different really but have ancle support and built in insoles Smile and i believe pecs are like picture cards for communication.

xxx
#5
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Thankyou lucy x


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