Jaxon's Blog Archives - ROHHAD Association

Jaxon’s Blog (written by his mum Shanel)

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Since Jaxon’s birthday things have been very busy. We’ve had several adjustments in meds and with the ventilator. Jaxon has started cortisol supplement when he is sick or his body is under stress. His ventilator pressure has been increasing. There are times even with the increases that Jaxon is having sever obstruction and his body is accepting 0ml volume of air with his ventilator pressure maxed out. I’m going to have to learn how put it a tube (down his throat past the obstruction)and bag him in an attempt to get him breathing again. This is very scary. We are also going to be meeting members of the local fire department so they can meet Jaxon and know his care plan, in the event they are first responders to an emergency with Jaxon and his breathing or cardiac issues.

We have gotten a new Armadillo back for Jaxon’s wheelchair(see pic above) to help give him better support in an attempt to alleviate some of his back/neck/leg pain.

The public school board has decided his needs are too complex for them to even try to meet. As a result I have started a relationship with an agency who helps advocate for inclusion for individuals with disabilities. I’ve also had meetings with different people in local government in attempt to address some of the shortcomings with programs for people with complex needs.
Jaxon also decided on his make a wish. He wished for a camper trailer. He’s adamant that it will be decorated with superheroes everywhere and that he will take his superheroes to visit the ocean this upcoming summer.
Like I said, life has been very busy. Never a dull moment. And in amongst all the chaos, my superhero still needs to find time to just be a 5 year old boy.

Jaxon’s Blog

Meet Jaxon jaxon 1

Jaxon is 5yrs old and lives in Canada with his mum and big sister. He is a massive Superhero fan ! The photo above was taken last week on his 5th birthday.  Jaxon has been diagnosed with ROHHAD and his mum Shanel will blog on the website from time to time to allow our followers and supporters an insight into Jaxon’s ROHHAD Battle.

Shanel has been doing all she can to raise awareness in Canada and Jaxon was recently on the news (click the link below to view the video)

http://globalnews.ca/video/2305670/rare-condition-causes-rapid-weight-gain-in-children

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Jaxon has like all the children battling ROHHAD spent a lot of time in hospital fighting for his life.

Keep following our Social Media pages and check in on the website from time to time to hear and learn more about Jaxon and how brave and strong he is.  Shanel will be blogging soon

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