Mum to Alex 18 months, born with a CHD (Truncus Arterosus), had 2 open heart surgery's and during the second one at 17 months Alex suffered a stroke.
This has left Alex with mobility issues (right leg and left arm) also no one knows how he has been affected mentally or how he will develop in the future.
Alex is awaiting cardiac cath for shunts to be put in to the arteries going to his lungs (due to be done 8th march)
Awaiting MRI scan just before 2nd bday to assess the damage
Gets physio/Ot and speech and languge support (all say hes doing fabbie)
Child/ren Name/s: Tommy
Chid/ren DOB/s: May 2002
My Child/ren is/are fighting: Currently being assessed for autistic spectrum
Tommy(8) is my 2nd child (others are 10, 4 and 6weeks)
I have always known something was not quite with Tommy, but all the professionals I spoke to said it was my personal circumstances that made him the way he is (domestic abuse and also his step father passed away suddenly when he was 6)
It was only 6 months ago that another professional read a list of concerns about Tommy that I had written and she referred us straight away. We are now on the first step of the assessment ladder. It has taken me 6 years to get here but I am determined to get my son the help he needs and has been denied for so long!
Child/ren Name/s: Tabitha
Chid/ren DOB/s: Feb 2011
My Child/ren is/are fighting: Congenital Hypothyroidism
Hi ladies, been lurking a while on here now!
My little angel is 10weeks and was diagnosed at birth with Congenital Hypothyroidism. This can lead to diminished mental capacity and slow growth but she was diagnosed really fast so we're just keeping our fingers crossed. she follows her weight centiles perfectly and now i'm just always on the lookout for the next milestone!
thanks Emma for putting me intouch with your friend
Child/ren Name/s: Andrew
Chid/ren DOB/s: August 2009 - 11 weeks premature
My Child/ren is/are fighting: unmeasured bilateral deafness, delayed speech, delayed development, and feeding issues
I do apologise for missing this introductory section months back when I started posting in here!
Andrew was 11 weeks prem, had a pre-birth bleed in his head, and then during his first year he suffered from Infantile Spasms. He now has bilateral deafness but we disagree with the audiologists as to how severe; speech delay as a result of the deafness and his development; 4-6m development delay depending on what you measure; and feeding issues - he has only just started accepting stage2 lumpy food, he refuses to finger feed.
Forgot to say. He is also TINY He was IUGR, born weighing just 1lb 6oz. He's now 20m actual (17m corrected) but wearing size 6-9m clothing. He's well off the standard growth chart, lurking around -3SD on the low birthweight chart.
Child/ren Name/s: Ellie
My Child/ren is/are fighting: Ellie is still being tested for mild cerebal palsy, she has either DDH or Hemihypertrophy of her left leg and torticollis, slow weight gain and her body only makes up 3 of the white blood cells it needs and doesnt absorb zinc
Child/ren Name/s: Robbie
Chid/ren DOB/s: 30/7/05
My Child/ren is/are fighting: we are having him tested for Autism
Any extra Info: Robbie has struggled with developmental delay for many years, since coming to live with us he has improved vastly. He starts primary 1 in September 2011 and sees a speech therapist reguarly.
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