The other day I was so excited to get an email from Julie. She is Mason's mom. I wanted to share with you a little bit of Mason from her email.Hi my name is Julie - Mason's mom.
Mason age 4, was diagnosed with ROHHAD in Aug. 2008. I have really been enjoying your blog and I appreciate you putting up Mason's picture.
I wanted to tell you I think Haven is adorable and I have showed her picture to Mason & he would like to meet her one day.
We are trying to get up to see Dr. Weese-Mayer in January '09 to hopefully learn more about ROHHAD. The doctors here in St. Louis do not know much about it. Mason was a healthy boy until he started gaining weight about 1 year ago and in Feb' 08 his eye started to turn out. We took him to the Dr and they said he just had strabismus and not to worry about the weight gain (it was not too much) 10 - 12 pounds in 1 year. Then in June of '08 he feel asleep at daycare & went into respiratory arrest. He spent 2 months in the hospital and was finally diagnosed with ROHHAD. They said he had to have a tracheotomy and has to sleep on a ventilator.
The picture above is from last weekend. Looks like he got to out to the bowling alley play a few games. I am so happy to be in contact with Julie. Mason is just adorable. There are so few of us affected by ROHHAD that when you finally find another amazing child it just takes over your world.
Haven was excited to see Mason's new picture. She is making a beautiful card for Mason and wants to send him a picture of her. She says they are going to be writing friends and maybe one day they can play together.
Keep in touch with us Mason!
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