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LoveQuiltsUK - Steven L's quilt

Steven L's quilt    (Quilt currently being assembled)

Born:2014
Illness: Benign Macrocephaly, Hypermobility, hypertonia, Gorlin Syndrome, Physical Development Delay

Theme: Disney Characters

Quilt currently being assembled
Photo of Steven L

Theme details

Disney Characters - All characters...Cars, Frozen and Princesses are favourites



Biography

Steven was born at 40 +11 after being induced and we were moments away from a c-section, before forceps finally managed to manipulate him into the right position as he had presented looking to the side rather than up or down!
At the 20 week scan they noted that his head was very large and needed further scans as they couldn't get the measurements properly. At the follow-up they couldn't see the heart properly so we had to have a further fetal cardiac scan but the scans all suggested everything was ok other than the larger than typical head.
At birth his head was 98th centile and the rest of the measurements around the 9th. The paediatrician said he looked just like his dad, including the corners on his head!
It took several weeks/months to be referred to physio and paediatric services for the diagnosis journey to start. Neurology concluded it was macrocephaly and not hydrocephalus and discharged him and the community paediatric team have continued to investigate. They've found chromosome deletions that led to a diagnosis of Gorlin Syndrome (but a new variant, with routine brain MRI scans due to high risk of brain tumours). None of this explains his inability to walk. I've lost count of the CT and MRI scans he has had to have (under sedation) on various parts of his head and body! He uses a wheelchair and is now slowly gaining confidence with his full body support walking frame - a Mustang with a seat on it for him to perch on.

Steven also remains in nappies and that's something that's unexplained as well but the medical team don't seem bothered so that's a battle for another time!

We are currently waiting on a further genetics appointment as the paediatrician is asking for further advice and support!

He has started mainstream reception this school year and loves the time with others at school but struggles with his peer group as they run and charge around. He prefers the older girls who like to 'mother' him, he loves the attention! His blonde hair, blue eyes and smile certainly gets him attention and the fact that he wants to talk to everyone and expects them to talk to him soon wins most people over! He doesn't let anything phase him and doesn't see himself as different, but he is desperate to walk and simply can't!

He is a very happy young man most of the time and loves spending time with people! We've been taking him to a drama club as he loves singing and his version of dancing and the group is great as they let him sit on stage and do as much as he can. We look forward to seeing him perform Rudolph and silent night with the group in a couple of weeks!
We have no idea if or when he may start to walk or become aware of his bowel movements etc. but he is improving and that's all that matters!



Patterns


1.Disney castle hoping to include some small characters tooStitcher: Bev Lucas , Newmarket , UK
Received

2.Rapunzel with lanterns (simpler) by Beth Filmer from LQUK files Rapunzel with lanternsStitcher: Karen Burton, Peterborough, UK
Received

3.Elsan and Anna sisters forever from LQUK filesStitcher: Jo, York, UK
Received

4.Designer Stitches: F21 101 Dalmatians Piano Time ~ Cross Stitch Kit 5 Puppies from 101 Dalmations sat around a pianoStitcher: Natalie Hardman, Burscough, UK
Received

5.Saetta McQueen, Disney a punto croce No. 99 Lightning McQueen from CarsStitcher: Jan S, Enid, Oklahoma, USA
Received

6.From Cross Stitch Magazine Mater and Red From Disney CarsStitcher: Jean, Buckinghamshire, England
Received

7.From Love Quilt Files - ANNA (same as I did for Darcy H) Stitcher: Kirsty Smith, Bowburn, UK
Received

8.Elsa with snowflakes from LQ filesStitcher: Clare Blandy, Meppershall, England
Received

9.Nemo from finding Memo (pattern from punto de cruz disney)Stitcher: Joanne Heap, Liverpool, UK
Received

10.From LQ Files Princess MinnieStitcher: Nicola, St Albans, UK
Received

11.Stitcher: Jackie, York, England
Received

12.Label Stitcher: Jenny Elkington, Boston, UK
Received


Squares received

Cross stitch square for Steven L's quilt
Stitched by: Jenny Elkington
Submitted: Jan 2019

Cross stitch square for Steven L's quilt
Stitched by: Bev Lucas
Submitted: Apr 2019

Cross stitch square for Steven L's quilt
Stitched by: Karen Burton
Submitted: Jan 2019

Cross stitch square for Steven L's quilt
Stitched by: Jo
Submitted: Mar 2019

Cross stitch square for Steven L's quilt
Stitched by: Natalie Hardman
Submitted: Mar 2019

Cross stitch square for Steven L's quilt
Stitched by: Jan S
Submitted: Apr 2019

Cross stitch square for Steven L's quilt
Stitched by: Jean
Submitted: Feb 2019

Cross stitch square for Steven L's quilt
Stitched by: Kirsty Smith
Submitted: Apr 2019

Cross stitch square for Steven L's quilt
Stitched by: Clare Blandy
Submitted: Apr 2019

Cross stitch square for Steven L's quilt
Stitched by: Joanne Heap
Submitted: Jan 2019

Cross stitch square for Steven L's quilt
Stitched by: Nicola
Submitted: Jan 2019

Cross stitch square for Steven L's quilt
Stitched by: Jackie
Submitted: Apr 2019


Card

Card for Steven L
Stitched by: Nicola Dove

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