Love Quilts on Facebook

Join us
on Facebook

Love Quilts on Twitter

Follow us
on Twitter

RSS
LoveQuiltsUK - Levi-Jett M's quilt

Levi-Jett M's quilt    (Quilt currently being assembled)

Born:August 2015
Illness: Arthrogryposis and thought to be mutiple rare genetic conditions but currently undiagnosed

Theme: Zoo animals and Superheroes

Quilt currently being assembled
Photo of Levi-Jett M

Theme details

Zoo animals and Superheroes - Backfilled quilt



Biography

So I shall start from the beginning. Whilst pregnant we found out at 16 weeks that Levi had bilateral talipes, we went for lots of further scans including scans at a fetal medicine centre, a duodenal atresia was seen and some soft markers pointing towards a genetic condition mainly trisomy 18 and trisomy 21, our consultants tried to talk us into termination. We were told that Levi wouldn't survive the pregnancy or the birth and even if he did that he wouldn't survive long! On return scans the atresia wasn't seen. But little fetal movement was ever seen on ultrasound. We felt big movements but never kicks. But towards the end even these stopped and I had polyhydramnios. We kept returning for yet more scans and monitoring and it was decided to induce 3 days before his due date. The labour went fast and Levi was born weighing 8lbs! But it was immediately noticeable of his physical disability... It was more than just bilateral talipes. Levi was sent for tests,xrays,scans and bloods for genetics. Levi had a heart murmur. He had some of the soft markers for genetic conditions- low set ears, wide nasal bridge, down pointing eyes, micrognathia, high and narrow palate, no creases, no reflexes. Levis feeding was very poor, but we were discharged a couple of days later. It wasn't for long as at 2 weeks he was rushed back into intensive care. Levi ended up on oxygen, after lots more tests etc... They found Levi was having absent seizures, He had sleep apnea, unsafe swallow due to aspiration, uncoordinated suck-swallow-breathe and Levi had his first NG tube inserted! Levi was finally discharged... But things don't get any easier just cause they are not in hospital it's still a daily fight in and out of hospital and lots of appointments with daily therapies! It has been a long road ever since with many bumps... Levi has been in and out of hospital ever since BUT he still has NO DIAGNOSIS, Levi's doctors call him a mystery and say that looks can be very deceiving, he has been discharged by some doctors, we have had lots of opinions and upto now They have found:
Levi has arthrogryposis affecting his jaw(giving him a 1cm opening),both his shoulders,both wrists, all fingers,both hips, both knees, all toes, ankles(bilateral talipes). His spine has began to curve.
Hypotonia everywhere, he's awaiting an appointment with a muscle specialist as they say he has no power(not caused by the arthrogryposis!)Levi cannot weight bare and we have been told his joints are not strong enough to do so. They think he has a neurological condition but it can take until they are between the ages of 2 and 3 for it to show on an MRI. Caudal regression is queried. He has a High narrow palate, unsafe swallow due to aspiration, no reflexes, unsafe suck-swallow-breathe coordination, narrow floppy airway, larynmalacia, thick mucus to his lungs and upper airway, excess secretions, low immune system, recurring chest infections(queried cystic fibrosis got to wait and see) sleep apnea,constipation, reflux(queried sandifer syndrome), absent seizures, long QT syndrome.
So far a couple of variations have been found in Levi's DNA but they have never been seen them together before, they don't know what the future holds or why Levi is like he is, Levi may never get an official diagnosis but He is a warrior and will continue to fight.
💙💙💙💙💙



Patterns


1.Stitcher: Margaret, Wolverhampton, UK
Received

2.Stitcher: Kaye S, Bangor, Northern Ireland
Received

3.Stitcher: Kathryn, Wellington , New Zealand
Received

4.Stitcher: Leanne Malcolmson, Romsey, UK
Received

5.Stitcher: Sue, Milton Keynes, UK
Received

6.Stitcher: Julie, Portgordon, Scotland
Received

7.Stitcher: Ros, Norfolk, UK
Received

8.Stitcher: Karen, Majorca, Spain
Received

9.Stitcher: Sally, Hull, UK
Received

10.Stitcher: Monika, Letchworth GC, UK
Received

11.Stitcher: Leanda Vickers, Oldham , England
Received

12.Label Stitcher: Jill Smith, Taunton, England
Received


Squares received

Cross stitch square for Levi-Jett M's quilt
Stitched by: Jill Smith
Submitted: Apr 2018

Cross stitch square for Levi-Jett M's quilt
Stitched by: Margaret
Submitted: Jun 2016

Cross stitch square for Levi-Jett M's quilt
Stitched by: Kaye S
Submitted: Apr 2017

Cross stitch square for Levi-Jett M's quilt
Stitched by: Kathryn
Submitted: May 2017

Cross stitch square for Levi-Jett M's quilt
Stitched by: Leanne Malcolmson
Submitted: Jul 2017

Cross stitch square for Levi-Jett M's quilt
Stitched by: Sue
Submitted: Jul 2017

Cross stitch square for Levi-Jett M's quilt
Stitched by: Julie
Submitted: Nov 2017

Cross stitch square for Levi-Jett M's quilt
Stitched by: Ros
Submitted: Jan 2018

Cross stitch square for Levi-Jett M's quilt
Stitched by: Karen
Submitted: Feb 2018

Cross stitch square for Levi-Jett M's quilt
Stitched by: Sally
Submitted: Feb 2018

Cross stitch square for Levi-Jett M's quilt
Stitched by: Monika
Submitted: Feb 2018

Cross stitch square for Levi-Jett M's quilt
Stitched by: Leanda Vickers
Submitted: Mar 2018


Card

Card for Levi-Jett M
Stitched by: Leanne Malcolmson

Back to home