@mindingthegapuk - Minding The Gap uk

Life living with a Laryngeal Cleft. Ins & outs of Joel's medical journey/general toddler life/cleft/GERD/hospital/hospice ๐Ÿ’™ Check out latest blog ๐Ÿ‘‡
http://mindingthegapuk.co.uk/blog-2
Back home after a few days with the grandparents.
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This is just one of the bags of rubbish from our 3 night stay. Joel is a very 'wet' child, lots and lots of secretions pour out of his trachy everyday - image a baby dribbling but instead of from the mouth it's from the trachy. In the day they just fall out or he coughs them out but at night it's a different story. .
We all know what it's like when we have a cold and we get all bunged up lying down...that's what happens with Joel. Once he is flat it's harder for him to cough up his secretions or for them to fall out. So, we are often up in the night, more than in the day, to give him some assistance. When he has a cold, the frequency of the intervention increases.
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#babyjoel #secretions #suction #night #sleep #rubbish #medical #trachy #tracheostomy #gastrostomy #gtube #gtubebaby #tubie #tubiebaby #floppylarynx #laryngealcleft #cleft #trachymum #instagood #love #mummyblogger #specialneedsmom #bloggermum #blogger #bloggers #blog #mindingthegapuk
Minding The Gap uk - @mindingthegapuk Instagram Profile - japogram.xyz
mindingthegapuk
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Back home after a few days with the grandparents. . This is just one of the bags of rubbish from our 3 night stay. Joel is a very 'wet' child, lots and lots of secretions pour out of his trachy everyday - image a baby dribbling but instead of from th

First time doing the Christmas Cake with the grandparents ๐Ÿคถ
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We used to do this every year as children so it's great to see the family tradition continue 
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#babyjoel #cake #christmas #baking #grandparents #love #medical #trachy #tracheostomy #gastrostomy #gtube #gtubebaby #tubie #tubiebaby #floppylarynx #laryngealcleft #cleft #trachymum #instagood #mummyblogger #specialneedsmom #bloggermum #blogger #bloggers #blog #mindingthegapuk
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mindingthegapuk
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First time doing the Christmas Cake with the grandparents ๐Ÿคถ . We used to do this every year as children so it's great to see the family tradition continue . . . . . #babyjoel #cake #christmas #baking #grandparents #love #medical #trachy #tracheos

Way to go Princess Eugenie on showing your battle scar 
๐Ÿคต
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Photo credit and full article - https://www.google.co.uk/amp/s/www.bbc.co.uk/news/amp/uk-45835711
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#royalwedding #scoliosis #raiseawareness #scar #inspiration #strength #medical #surgery #weddingdress #specialday #marriage #love #instagood #mummyblogger #bloggermum #specialneedsmom #blogger #bloggers #blog #mindingthegapuk
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Way to go Princess Eugenie on showing your battle scar ๐Ÿคต . . . . . Photo credit and full article - https://www.google.co.uk/amp/s/www.bbc.co.uk/news/amp/uk-45835711 . #royalwedding #scoliosis #raiseawareness #scar #inspiration #strength #medical

We are very fortunate that Joel doesn't require palliative care but we do know alot of families that do.
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So here we are helping to spread awareness of childrens palliative care with #HatsonforCPC day with @naomiandjack ๐Ÿงข
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Get involved or share this post to help raise awareness of such a vital service 
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#childrenspalliativecare #raiseawareness #hospice #children #care #carers #nurses #love #medical #trachy #tracheostomy #gastrostomy #gtube #gtubebaby #tubie #tubiebaby #floppylarynx #laryngealcleft #cleft #trachymum #instagood #mummyblogger #specialneedsmom #bloggermum #blogger #bloggers #blog #mindingthegapuk
Minding The Gap uk - @mindingthegapuk Instagram Profile - japogram.xyz
mindingthegapuk
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We are very fortunate that Joel doesn't require palliative care but we do know alot of families that do. . So here we are helping to spread awareness of childrens palliative care with #hatsonforcpc day with @naomiandjack ๐Ÿงข . Get involved or share

Always miss this guy loads when he is at @zoesplacebabyhospice 
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Even though he is hard work, keeps us up at night and likes to mix winter and summer wardrobes....
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#babyjoel #respite #hospice #childrens #cooldude #medical #trachy #tracheostomy #gastrostomy #gtube #gtubebaby #tubie #tubiebaby #floppylarynx #laryngealcleft #cleft #trachymum #instagood #love #mummyblogger #specialneedsmom  #bloggermum #blogger #bloggers #blog #mindingthegapuk
Minding The Gap uk - @mindingthegapuk Instagram Profile - japogram.xyz
mindingthegapuk
4

Always miss this guy loads when he is at @zoesplacebabyhospice . Even though he is hard work, keeps us up at night and likes to mix winter and summer wardrobes.... . . . . . #babyjoel #respite #hospice #childrens #cooldude #medical #trachy #tracheos

Throwback to 2 years ago today.
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Still an inpatient on the paediatric high dependency unit at @nhsuhcw. By now we had been there so long it was home and home had become the place we went to sleep.
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This photo captures those moments when all the stress and emotion stops and it's just you and your baby 
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#babyjoel #hardtimes #love #mum #son #hospital #medical #trachy #tracheostomy #gastrostomy #gtube #gtubebaby #tubie #tubiebaby #floppylarynx #laryngealcleft #cleft #trachymum #specialneedsmom #mummyblogger #instagood #bloggermum #blogger #bloggers #blog #mindingthegapuk
Minding The Gap uk - @mindingthegapuk Instagram Profile - japogram.xyz
mindingthegapuk
0

Throwback to 2 years ago today. . Still an inpatient on the paediatric high dependency unit at @nhsuhcw. By now we had been there so long it was home and home had become the place we went to sleep. . This photo captures those moments when all the str

Someone finally understands that if he wants to move...he has to take his milk with him 
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#babyjoel #milk #pump #feed #formula #tubefed #tubefeeding #lift #carry #medical #trachy #tracheostomy #gastrostomy #gtube #gtubebaby #tubie #tubiebaby #floppylarynx #laryngealcleft #cleft #trachymum #instagood #love #mummblogger #bloggermum #blogger #bloggers #blog #mindingthegapuk
Minding The Gap uk - @mindingthegapuk Instagram Profile - japogram.xyz
mindingthegapuk
9

Someone finally understands that if he wants to move...he has to take his milk with him . . . . . #babyjoel #milk #pump #feed #formula #tubefed #tubefeeding #lift #carry #medical #trachy #tracheostomy #gastrostomy #gtube #gtubebaby #tubie #tubiebaby

Still snotty + missing out his playdate + grandparents and uncle just left = a pretty grumpy Joel ๐Ÿคจ
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#babyjoel #nofilter #poorly #sad #sick  #winteriscoming #medical #trachy #tracheostomy #gastrostomy #gtube #gtubebaby #tubie #tubiebaby #floppylarynx #laryngealcleft #cleft #trachymum #instagood #love #mummyblogger #bloggermum #blogger #bloggers #blog #mindingthegapuk
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mindingthegapuk
3

Still snotty + missing out his playdate + grandparents and uncle just left = a pretty grumpy Joel ๐Ÿคจ . . . . . . #babyjoel #nofilter #poorly #sad #sick #winteriscoming #medical #trachy #tracheostomy #gastrostomy #gtube #gtubebaby #tubie #tubiebaby

2 videos for you to help you get an insight of what it's like with Joel having a cold.
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Video 1 - this is Joel with a cold. Boiling hot, lots of secretions hence the noise from his trachy and heavy breathing. This is enough to reduce his oxygen levels to the point he needs support. With the trachy being a direct access to his lungs he is very vulnerable to a slight cold becoming much worse so he gets kept indoors or sent to hospital till it passes. For now we are at home.
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Video 2 - thankfully we have oxygen in the house. We are able to administer a certain amount but a need for anything more means he has to go to hospital. Living with oxygen means having a concentrator that produces oxygen and directs it to his room. We can then give Joel oxygen via tubing and a mask on his trachy (too dark to film). Unfortunate side of having a pet concentrator is the loud, breath like sound it makes.
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#babyjoel #poorly #cold #oxygen #concentrator #saturationlevels #support #medical #trachy #tracheostomy #gastrostomy #gtube #gtubebaby #tubie #tubiebaby #floppylarynx #laryngealcleft #cleft #trachymum #instagood #love #mummyblogger #bloggermum #blogger #bloggers #blog #mindingthegapuk
Minding The Gap uk - @mindingthegapuk Instagram Profile - japogram.xyz
mindingthegapuk
11

2 videos for you to help you get an insight of what it's like with Joel having a cold. . Video 1 - this is Joel with a cold. Boiling hot, lots of secretions hence the noise from his trachy and heavy breathing. This is enough to reduce his oxygen leve

On the way in to Joel's clinic appointment and this is what we have to walk past.
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If there is one thing that makes no sense it's smoking at hospitals - why would anyone think it's ok to smoke where others have to wheel in sick or vulnerable people?
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Not even worth the rant because the post would be too long.
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#babyjoel #birminghamchildrens #smokers #smoking #litter #dirt #hospital #medical #tracheostomy #trachy #gastrostomy #gtube #gtubebaby #tubie #tubiebaby #floppylarynx #laryngealcleft #cleft #trachymum #instagood #mummyblogger #bloggermum #blogger #bloggers #blog #mindingthegapuk
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mindingthegapuk
5

On the way in to Joel's clinic appointment and this is what we have to walk past. . If there is one thing that makes no sense it's smoking at hospitals - why would anyone think it's ok to smoke where others have to wheel in sick or vulnerable people?

Birmingham Children's Hospital and Charity