Nikki - ROHHAD - Australia

If you remember my post about ROHHAD children you will remember seeing a small blurb on Nikki B from Australia. Since then I have been in contact with her mom, Karen. I can't even explain what it's like to be able to connect and talk with all of these moms. I am so happy that everyone has reached out and are keeping in touch.

I have a few updates on Nikki. As of today, Nikki has been in the hospital for 16 weeks with the doctors still trying to figure out ROHHAD. Nikki is sometimes allowed home with her nurse for a couple hours in the week but usually her family has to visit her in the hospital. Currently the doctors have not given an exact date of when Nikki will be able to go home but they are saying POSSIBLY after the new year. Karen told me to day that Nikki will be allowed to come home for lunch on Christmas day so they are super busy getting the house and her room set up for her visit. They have also been working on Nikki's Christmas in the hospital and making angels to put all over her room.

I hope to soon get Nikki's complete ROHHAD story and will share it with all of you. Above is a picture of Nikki and her mom, Karen. Thank you so much for sending your photo to us!

Please keep Nikki in your thoughts and prayers and may she come home to her family soon!

Sophia - ROHHAD - Massachusettes

If you remember my post about ROHHAD children you will remember seeing a small blurb on Nikki B from Australia. Since then I have been in contact with her mom, Karen. I can't even explain what it's like to be able to connect and talk with all of these moms. I am so happy that everyone has reached out and are keeping in touch.

I have a few updates on Nikki. As of today, Nikki has been in the hospital for 16 weeks with the doctors still trying to figure out ROHHAD. Nikki is sometimes allowed home with her nurse for a couple hours in the week but usually her family has to visit her in the hospital. Currently the doctors have not given an exact date of when Nikki will be able to go home but they are saying POSSIBLY after the new year. Karen told me to day that Nikki will be allowed to come home for lunch on Christmas day so they are super busy getting the house and her room set up for her visit. They have also been working on Nikki's Christmas in the hospital and making angels to put all over her room.

I hope to soon get Nikki's complete ROHHAD story and will share it with all of you. Above is a picture of Nikki and her mom, Karen. Thank you so much for sending your photo to us!

Please keep Nikki in your thoughts and prayers and may she come home to her family soon!

Mason - ROHHAD - St. Louis

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!

Josh Wooten - ROHHAD - Texas

This is just awesome. To speak with other mom's and get to know them and to be able to talk about our children is just amazing. Here is an email Haven received from Vanessa Wooten about her amazing son - Joshua Wooten:

Hi Haven,

Your birthday - January 26th - is also my birthday. But I am a bit older than you. I was born January 26, 1973.

My son, Joshua - who is 12 - also has ROHHAD. But he does not (so far) have a tumor. He is checked for them each year now. He seemed completely normal (as far as we could tell) until he was 8 and a half years old. That is when he started being extra sleepy each day after school. He didn't feel like he could keep his eyes open - even enough to eat dinner or go to church (which he loved to do). Then he got a real high fever and collapsed when he got out of the bathtub (I had made him take a bath to try to help wake him up).We took Josh to an emergency clinic. The doctor there found out he didn't have enough oxygen in his blood. They put a mask on his face to help give him more oxygen and called an ambulance to take him to the hospital.

At the hospital, Josh stopped breathing (not right away - but hours after he got there). It happened suddenly and doctors tried to get a tube to go in his mouth and down his throat so a machine could breathe for him. They had a really hard time placing the tube and Josh nearly died. But finally, they got it right and saved him. He spent the next 2 weeks in the hospital. The doctors didn't know what had made him stop breathing - even after all those days in the hospital. They gave him steroids in an IV and he got stronger and they finally let him go home. (Alot of other stuff happened too - like he had stopped being able to move or feel his left arm and leg for a while and he also had a seizure - but those things got better along with the steroids.)

The doctors thought he was all better by a few months later. But he started having troubles again and had to go in another hospital for more tests and to have a machine breathe for him again. This time, he spent 6 weeks in the hospital. But before he got out, doctors decided it was best to put a tube in his throat that would more easily hook up to the breathing machine (ventilator). And they had him hook up to it everytime he was going to go to sleep (to make sure he didn't stop breathing again). That tube is called a trach because it goes through his neck into a place called the trachea (where air goes up and down from your mouth and nose to your lungs).

Now, Joshua also has some trouble with how his body deals with fluids. He also has to take growth hormones (with shots) 6 days a week. And he takes a small steroid pill every day. He has a hearing loss in both ears (only high pitch sounds - like s, th, ch sounds) and he wears hearing aids in both ears to school. And he has a special nurse who comes on the bus and rides with him to school. She stays with him all day and rides the bus back home with him, too. That is partly because Josh has to take his breathing machine with him and hook up almost all day long (doctors say he has to - even though he seems to be able to breathe ok on his own most of the time). His nurse helps him suction out stuff he might cough up in his trach tube and help him get around with his ventilator. She also helps remind him to drink because he gets so dried out but doesn't realize it. And, she checks his temperature and blood oxygen level and carbon dioxide levels in his blood to help make adjustments to his ventilator (how many breaths it gives him every minute - that kind of thing).

Josh sees all kinds of doctors, too. He has a regular pediatrician close to the house. He sees a lung doctor (pulmonologist), a heart doctor (cardiologist), a brain doctor (neurologist), a hormone specialist doctor (endocrinologist), and a cancer doctor (oncologist) who checks him for tumors like the one you have. All those doctors are in our area - but about a 30-45 minute drive across San Antonio from us. He has also gone to see a doctor in Chicago who has seen other kids with ROHHAD and a similar disorder called CCHS. We have only seen her (Dr. Debra Weese-Mayer) once. Then, we found out about some other doctors who might be able to help us in Houston (they are looking into the cause of the disorder and they also do some work putting a device inside the chest to help people breathe bigger without a ventilator). And Josh has even gone for a special MRI study at UCLA.

Well, I'd love to hear more about you and what you think about all your doctors and tests and all. I know you have been through a lot in the last couple of years.

Vanessa

PS You can see lots of pictures of us and read about us on several web pages:
http://www.vwootenworld.blogspot.com/
http://www.myspace.com/Vanessa1973

are just a couple of them

Aleah - Stage 2, Large B-Cell Non-Hodgkins Lymphoma

Haven received some beautiful beads to make necklaces and bracelets from Miss Alaska 2005, Aleah Scheick. She also gave Haven a beautiful signed photo with a beautiful message of inspiration to her.

Aleah was also diagnosed with cancer - you can check out her CaringBridge site. She was diagnosed with Stage 2, Large B-Cell Non-Hodgkins Lymphoma. Her cancer began in June 2006 (same month as Haven's) and they figured it out and started treatment in August 2006.


Thank you for the beautiful beads and inspirational note to my daughter.