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LoveQuiltsUK - Jaxon's quilt

Jaxon's quilt    (Quilt currently being assembled)

Born:2018
Illness: Nemaline myopathy

Theme: Male Disney Characters

Quilt currently being assembled
Photo of Jaxon

Theme details

Male Disney Characters - See Interests for favourites. 1xMoana is OK too :)



Biography

When we were 20 weeks pregnant with Jaxon we received the news that he had the same gene as his sister. She passed away at 6 months in 2016 due to the condition.
Because we had experience with the condition we knew what support Jaxon may need upon birth. At the beginning he needed a bipap machine to aid his breathing, slowly he began to come off the machine and self-ventilate from 8 weeks old. At 12 weeks of age we had a sleep study which showed Jaxon needed to use a bipap through the night due to CO2 levels, he could not expel enough CO2 himself. We began using a bipap ventilator straight after his operation for his gastrostomy.
Jaxon was also born with extra fluid around his brain which we continue to monitor with MRI scans. Jaxon is unable to swallow so needs to have his secretions suctioned out around 50 times a day and he is peg fed only. He has lots of trouble with his chest and frequently spends time in hospital due to infections. Jaxon is unable to sit as his muscles are very weak in this area and it causes him to drop his oxygen levels, because of this we are thinking about a tracheostomy. He spends most of his day laid flat but does try in his special chair 3 times a day. He did 30 mins last week in one sitting which is amazing for him. He is a very strong little boy who, even with all his struggles, continues to learn new things each day. His legs and arms grow stronger day by day and he can now lift some of his toys above his head. He is beginning to try to say words like nana and dadda but is yet to learn mamma.



Patterns


1.Dmc finding Nemo custo kit and Dory from https://family.disney.com/craft/just-keep-swimming-cross-stitch/ Nemo and Dory chatting in the sea weed Stitcher: Emma, Stevenage, UK
Received
https://family.disney.com/craft/just-keep-swimming...

2.Paragon Disney - Pinnochio and Jiminy Cricket.Stitcher: Leanda Vickers, Oldham , England
Received

3.Walt Disney characters in cross stitch, book 5070 Dumbo flying with feather in truckStitcher: Sue Dickie, Aldershot, England
Received

4.LQ files OlafStitcher: Sarah, Gosport, UK
Received

5.Squirt from finding nemo(lquk files)Stitcher: Sylvia, Clacton, England
Received

6.Scar paean from LQ files Scar from lion kingStitcher: Jackie Billington, Birmingham , UK
Received

7.Lq files Moana at sunsetStitcher: Rachael Skinner , Southampton , UK
Received

8.Disney a punto croce no. 62 Aladdin with smoke coming from lampStitcher: Jan S, Enid, Oklahoma, USA
Received

9.Disney a punto croce Stitch sittingStitcher: Julie Edgcumbe, Haverhill, Suffolk, UK
Received

10.Disney a Punto Croce Baby Special Pinocchio holding booksStitcher: Karen Hockin, Southampton, England
Received

11.LQ files Judy hops ZootopiaStitcher: Jenny, Rushden, UK
Received

12.Label Stitcher: Jennifer Urquhart, Glasgow, Scotland
Received


Squares received

Cross stitch square for Jaxon's quilt
Stitched by: Jennifer Urquhart
Submitted: Feb 2020

Cross stitch square for Jaxon's quilt
Stitched by: Emma
Submitted: Nov 2019

Cross stitch square for Jaxon's quilt
Stitched by: Leanda Vickers
Submitted: Nov 2019

Cross stitch square for Jaxon's quilt
Stitched by: Sue Dickie
Submitted: Feb 2020

Cross stitch square for Jaxon's quilt
Stitched by: Sarah
Submitted: Jan 2020

Cross stitch square for Jaxon's quilt
Stitched by: Sylvia
Submitted: Nov 2019

Cross stitch square for Jaxon's quilt
Stitched by: Jackie Billington
Submitted: Feb 2020

Cross stitch square for Jaxon's quilt
Stitched by: Rachael Skinner
Submitted: Feb 2020

Cross stitch square for Jaxon's quilt
Stitched by: Jan S
Submitted: Feb 2020

Cross stitch square for Jaxon's quilt
Stitched by: Julie Edgcumbe
Submitted: Nov 2019

Cross stitch square for Jaxon's quilt
Stitched by: Karen Hockin
Submitted: Jan 2020

Cross stitch square for Jaxon's quilt
Stitched by: Jenny
Submitted: Jan 2020


Card

Card for Jaxon
Stitched by: Jill Smith

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