Items tagged ROHHADAwareness

Jaxon’s Blog (written by his mum Shanel)

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.

‘Angel’ Emilee’s story continued as written by her Dad Charlie

Well time to say a little more about my lovely daughter from where we left off.

Thinking back to when Emilee started school, it should be the happiest days of her life however at the same time she is getting sicker and sicker and none of the Doctors can tell me what is going on .

I can tell you it was very frustrating when all they can say is watch what you are feeding her even though you know that is not the problem. In Kindergarten she was doing very good and still had a few friends but at school not so much. I can see Emilee is still gaining more weight and now her temp will not stabilize it ranges from 106degree F( 41.11 degrees C ) to where it does not even register on the low end of thermometer and again Dr s do not know why.

Academically Emilee is still achieving 100% on all her school work even though she misses a month straight being in the hospital.

Having tests done and trying to keep her temp normal is mostly why she is spending so much time in the hospital for at this point. When we have to go to the hospital our local one they send her to a bigger hospital that is a 2.5hr drive for me and I still have Tony her brother to take care of. As a single parent it was hard to juggle it all and sometimes I would keep him with me and go to hospital to be with Emilee. This meant he was also missing school and for now he was doing really well in his work at school too.

Then sometimes I would have to stay at home and Emilee would be at the hospital by herself; I hated both situations take Tony with me and he misses school or leave him with someone and I go to hospital with Emilee or leave her alone in hospital. None of those decisions were easy and such a difficult choice to make neither is very good for any of us.

For now we where getting through it . Many times Emilee would end up falling asleep at school, we know now this was due to ROHHAD. I would go and collect her and bring her home and despite this her 1st grade work was excellent.

Her body and mind was getting worse and worse, she became affected by Diabetes which was really difficult and some violent tendencies were starting, her behaviour was changing before this she would never have hurt anyone or anything ever. As all of this was progressing and her body was changing so much, still Doctors could not tell me what was going on.

In the summer months Emilee spent 2 weeks at her mom’s and while she was there she had a seizure this was to be her first one of them with more to come. Her mom lives 8 hrs. from me so I went straight down there to see what was going on and still the Doctors had no answers for us they knew she was sick but did not know yet what was causing everything.

I was so scared of what was happening to my beautiful Emilee and then her mom decided she is going to try and take her from me. Her mum went to children's services to try and keep her. I loved my daughter with all my heart and I knew that staying with her mom was not in her best interests given that I was her main guardian and her father, I fought hard for Emilee as I knew it would be very hard on my baby girl. I went to a lawyer and managed to have Emilee returned home to me were she belonged.

Not long after she returned home her teachers wanted to test her for gifted classes because of how smart she was and how good she was in school . The problem was getting it done because she was spending more and more time in hospital and missing so much work because she was still having so much trouble staying awake at school. When Emilee did manage to take the test so when she did very well but just missed out by a few points.......................................

I will write more again soon, this is enough for me just now; none of this is easy on me but I hope it helps or comforts some people more to come soon.

‘Angel’ Emilee’s story – The beginning; written by her Dad Charlie

Emilee Rae Cesnick 10.14.1997 - 12.30.2014

My lovely beautiful daughter Emilee left us to be an Angel on Dec 30 2014.

Emilee had a syndrome called ROHHAD which was the main cause of her passing; complications arose due to ROHHAD.

She was born Oct 14 1997 my second child my lovely only sweet daughter she was so cute and what a great baby. Always laughing and smiling and of course crying as babies do. By the time she was 1 it was just her, my son Anthony who is 2 years older, and I on our own.

I was doing my best to raise them and I think I did a good job. She loved to be read too, so very much and would listen to all stories about anything. She would always ask me for a bedtime story when she learned to talk ! and at this age all was normal. No clues then that there was anything wrong with her body at all. By the time she was 2 she was on track reaching milestones, as a child her age should be.

Emilee loved to go on walks and talk and as I said listen to stories any that I would tell her. She loved going outside to play and playing in the play ground we would go there at least 3 times a week . She loved running around playing with other kids; she was just such a lovely happy little girl and the light of my life.

At 3 years old she started preschool but that is also the year she started to gain weight. At first I didn't notice it and her first year in school was great she was so popular and all the kids loved playing with her and wanted to be around her. The thing is by the end of that year you could really tell that she was gaining weight she had gained more than a hundred pounds in one year. She went from normal weight to being very overweight and nothing in the way I was feeding her caused it; this is before they knew what ROHHAD was they did not even have a name for it then or know anything about what was going on and why she was gaining weight .

Some Doctors said it was my fault they thought it was her diet; what i was feeding her because that is all that seemed to be going on at first. The rapid weight gain is now known as the first sign of the disease ROHHAD which stands for Rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation.

Then she started her second year of Head Start school she was so smart learned everything so fast . As for other kids though since she was bigger not so many wanted to be around her now . She did not notice so I was glad about that but I could see how the other kids were looking at her and laughing behind her back. It was very hard not to say anything to them but I did not say a word; I just wondered what was going on with her body.

Now it was time for her to start regular school and she did so good for the first couple of years. So clever, she got top marks or the best grades in everything but as time went on more and more problems developed....... to be continued.....

Emilee with her big brother and her daddy xx

ROHHADAwareness

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