Friends Of Haven

Denika - Newfoundland

2011-03-07T09:00:00.000-08:00

Denika is a beautiful girl we met almost 2 years ago now. Amazing to think back when first meeting and mentally review everything you have gone through together. She lives in Newfoundland and we have been friends pretty much since she was diagnosed. Her mom found me through Haven's web site. At the time she had just had the same surgery Haven did to remove her Ganglioneuroblastoma Tumor and was officially diagnosed with ROHHAD Syndrome. She then went on to Sick Kids in Toronto where I was contacted by an Endocrine doctor that wanted more information about my child. I put her in contact with our doctors immediately and asked them to help this little girl. Our doctors are so awesome they immediately took it on to work with her - they contacted me for permission to discuss Haven and off they went. Denika slowly began to follow Haven's treatments and what she had started with. Then suddenly Denika was found to have a second Ganglioneuroblastoma Tumor - this one in her chest. I couldn't believe it. Still Denika has battled on.........

A couple months ago her mom told me they were looking to go further in to the treatments and really do what Haven had done. Of course I was excited - I only want her to feel better and end this ridiculous disease. I told our doctors and randomly keep them updated on kids anyway. But in this case - they already knew.

Denika underwent her third surgery for a PICC line. Haven has a Cath-o-Port which is definitely much easier than a PICC/Hickman line. With the PICC line it is so easy to get infected or pulled out. We only had to endure the Hickman for 2 months and it was enough to make me crazy.

Denika has spent most of the last year in hospitals in preparation for these treatments. Not to mention three surgeries just for the PICC line. She was finally let home for Christmas to spend time with her family. They weren't sure she was going to be able to.

At the end of January/Early February Denika hopped on another flight to Toronto to begin her 4 day treatment of Hi CY. This is what Haven went through in 2009 - almost 2 years ago. Denika has been doing the IVIG treatments for almost 6 - 8 months now. She is just so adorable....I love her!

When she arrived in Toronto they immediately set her up with a sleep study to get her base line readings and prepare her for an extended stay.

About 2 weeks after Hi CY I received an email from her mom that Denika had lost her hair but her spirits were up. She had an infection while on antibiotics but was doing much better. She even told me that in just those couple of weeks they'd noticed a difference in Denika. I believe our first sign that something was working on Haven was the drop in blood pressure and being able to take her off the medication she'd been on for 2 years. Then it was that she was suddenly potty trained during the day.

On March 1st Denika celebrated her 6th birthday at the hospital. The pictures are amazing. I love seeing her smile. She looks like she was having a blast.

Now it's March 7th and Denika was allowed home on a day pass to visit with her family. We've been keeping up on Denika and are certainly happy she is doing well and able to come home even if for a day.

I was also contacted by a mom in CA that will begin following Haven's treatments. The doctors have been working through many of the details. Then our sweet Sophia in Massachusetts is being worked up to begin the treatments. She is currently in the beginning stages.

I am amazed daily at these children. The way they fight through treatments, medications, and being judged by their cover and not their poetic stories. I am honored to know all of these children and be part of their lives.

18 Years/no diagnosis - until Haven's Mystery Diagnosis aired

2011-01-25T09:08:00.000-08:00

A few days after Haven's episode aired I started receiving emails from people saying the watched the show and were happy to learn about Haven. One email hit me with a mystery diagnosis of her own that was finally solved with the show. Below is the email from the girl's mother:

Wow! Haven's mystery diagnosis story aired here in Florida about 2 hours ago, and I am just nicely able to stop crying and compose myself!

My daughter heather was born along with her twin brother on March 5, 1990. She was born happy and healthy and I have footage of her 2 years before all of this ROHHAD stuff took over our life, that I cannot even view, not even 18 years later!

She was this sweet and full of spirit young girl, and she and her twin brother were so fun to watch together! In September of 1992 we began to notice her appetite just went crazy!

Soon after she began to gain 15lbs-20lbs a month, and her stomach was very protruded. We lived in a small town where people couldn't wait to have something to talk about. People even wondered if she was somehow pregnant! That was the end of the line for me! I too took her in to see a Dr., we did not have health insurance and the doctor wanted to run some ridiculously extensive and expensive tests! We took her home scared to death, that something was seriously wrong and we didn't have enough coverage to pay for the testing!

January came and she was still gaining weight, and she had this terrible snore/breathing pattern which really freaked us out. January 9th, 1993, we could not wake her from her night of sleep and her lips were blue! We took her into our Dr. and he sent us to Albany Medical Center via ambulance. Heather was fine while she was awake, but the moment she fell asleep, she de satted! They intubated her and we were in for 8 weeks of hell with all kinds of testing and temporary diagnosis. She actually had a reaction to all of the drugs she was being given which was mistaken for brain damage! They removed all of her tonsils, adenoids, and even her uvula. Then she was given a permanent trach! Diagnosis CCHS.

We knew she wasn't born with it, and the weight gain, none of the other children spoke of with this disease had the weight gain! Heather has been operated on several times for strabismus, and it comes back every time!

Finally all these years and a show watched due to the very fact that we somehow knew someone would be on there someday with Heather's actual symptoms!

God bless you all! We have yet to find a physician in the 2 years that we have lived here in Florida! I am hoping it will be someone who is at least familiar with the term!

I would love to hear from you! and thank you so much for having the courage to be able to do that!

Sincerely, angela

Thank you for contacting me Angela! I am truly honored to meet you and Heather and to be able to share her story. I can't believe you have looked for a diagnosis for 18 years.....but ROHHAD is a hard one to figure out!

Here are photos of Heather for our fans:

Heather with her twin brother --- cutie pies!!!

Heather with her brother right before the weight and changes began

As she got older the weight began to pile on.

Heather today (with her twin brother) at 21 years of age.

Sofie - An Angel Reborn

2011-01-25T09:07:00.001-08:00

The broken cord

We little knew that morning that God
Was going to call your name.
In life we loved you dearly,
In death we do the same.
It broke our hearts to lose you,
You did not go alone;
For part of us went with you,
The day God called you home.
You left us peaceful memories,
Your love is still our guide;
And though we cannot see you,
You are always at our side.
Our family chain is broken,
And nothing seems the same;
But as God calls us, one by one,
The Chain will link again.

Our dear ROHHAD family has been hit hard once again as another beautiful baby has joined the heavens. Sofie became a guardian angel to all ROHHAD children on Saturday, January 22nd, 2011. She has forever touched our hearts and we miss her dearly.

Sofie was able to be visited by another ROHHAD baby while in the hospital. Sophia and Sofie played and played. Having a blast.

Sophia, Sofie, Mackenzie hanging out at the hospital.

Sofie (middle) was admitted in to the hospital in Boston for constant vomiting. They changed her medication and she was discharged with no further issues. She had a sleep study only a couple months ago that show a perfect sleeper. No obstructive or central sleep apneas present. She was then admitted back to the hospital for high sodium levels (a constant problem with ROHHAD). When she became stable she was discharged to a pediatric psych hospital to work with her behavior.

One week ago - Saturday, January 15th, Sofie was admitted back in to the hospital for high blood pressure and swelling. Monday, January 24th, Sofie was set to be discharged from the hospital and while waiting for the papers decided to take a nap. During this nap she suddenly stopped breathing and fell in to a coma.

Saturday, January 22nd, 2011, Sofie passed away. She has truly left a mark on our small ROHHAD family and will be remembered along with our other angels.

WE LOVE YOU SOFIE!!!

Ariel -- One of our newest friends

2011-01-07T09:42:00.000-08:00

Ariel is a 16 year old girl with Static Encephalopathy,Intractable Epilepsy, IBS and Chronic Tenosynovitis and is significantly cognitively impaired. She loves animals of all kinds and loves people to stop by and say hi,so please do.

From her mom - Linn:

Ariel was born 3 weeks premature ,which none of us thought would be a big deal,but boy were we wrong.After birth she immediately started turning blue and they spent 8 hours trying to stabilize her to transport to another hospital.We later learned she had respritory distress syndrome.We were told there may be all sorts of medical and physical problems for her because of this and that she would be in NICU for 4 months!

She started having a lot of stomach issues at about the age of 8 and after several endoscopies and numerous tests she was diagnosed with IBS. One Saturday night she collapsed on the floor in pain and her legs seemed to be stiff. We took her to the doctors and they admitted her to the hospital. The next day after an MRI they said she had osteomyelitis in the spine (infection of the bone) . They put a picc line in her and she was pumped with antibiotics for 4 weeks and then given 2 weeks of oral ones. She then developed colitis from the antibiotics and this seems to be where the story begins medically for her.

In June 2009, Ariel went into Status Elepticus and was in PICU and the hospital for a week. Since then she has been in and out of Status several times. She also got a Make A Wish trip to DisneyWorld. She also has 4 brothers Nick 22,Bret 21,and an MP in The Army serving in Iraq, Michael 17 and Daniel 18, who also has a caringbridge site. Please say prayers for Ariel and sign her guestbook to give her support.God bless,Linn

Please visit ARIEL: HERE

Josh Wooten Update

2010-11-02T09:34:00.000-07:00

Josh turned 14 this year!

Josh was selected to go on a dream hunt near Del Rio in December 2009, thanks to TNT Outdoor Explosion and Cast of Dreams. He shot his very first deer, a big buck. He even made the front page of the Del Rio newspaper the next day.

A note from Josh's mom about Josh and how he was diagnosed:

Everyone thought Josh was perfectly healthy and normal when he was younger.

His first problems were: sweating more than normal - which he's done since he was a baby,
failing hearing screenings - as early as 3 years of age (they said the trouble was in the high frequencies and he can hear most normal speech just fine), and a learning disability (discovered in 1st grade when he could not seem to grasp basic math and reading). Otherwise, Josh was active, rarely sick and usually quite happy.

It wasn't until he was 8-and-a-half that we discovered there was something seriously wrong with him. He'd had a throat infection and finished a course of antibiotics. He would get up and go to school ok, but come home and fall asleep on the couch and not be able to wake back up and stay awake. He was missing out on playing with his friends, going to a favorite church function, and he wasn't eating much. This lasted a few days. I thought he was just still recovering from that throat infection. But after having a bath to try to wake him enough to finish his overdue homework, still wrapped in a bath towel, he collapsed in front of me.

I got him to his bed, realized he was very hot, took his temperature and found he had a fever of 103. I gave him motrin, got him dressed and took him to a minor emergency clinic - thinking he likely needed more antibiotics. Instead, the doctor found his blood oxygen level was very dangerously low (50 percent and it should be 97-100 percent). They called an ambulance that rushed him to the hospital. The next morning, he went into respiratory failure and had to be resuscitated 5 times before getting him onto a ventilator. But they finally got it right and saved him. He spent the next 2 weeks in the ICU. While there, he lost feeling and movement in his left side and had a seizure. But powerful steroids and lots of IV's seemed to work and he got better soon.

Doctors did not find the real cause of his problems until months later and another hospitalization. He relapsed while at a Sunday Church Service with the rest of the family. Again he was rushed back to the hospital. After several more tests, doctors found the diagnosis they were looking for. His diagnosis was a combination of a few things: central hypoventilation (a part of the brain causes the body not to ventilate properly).... because he did not have that particular problem from birth, they called it Late-Onset. But his body was not producing cortisol as it should either. An endocrinologist said he also had hypothalamic dysfunction. After doing research about his condition, doctors made a decision which changed everything.

One of the doctors came out and talked to me privately. she said that Josh will not be able to breathe on his own ever again. That meant Josh will need to be hooked up to a ventilator 24 hours a day. But in order to do that, he had to have a tracheostomy tube inserted in his windpipe. To do so, doctors had to cut a small hole in his throat before the tube can be fitted in place.

You can read more about Josh at his mom's web site: CLICK HERE or click on the pictures above.

Denika - ROHHAD and GANGLIONEURBLASTOMA CANCER

2010-04-07T18:50:00.001-07:00

We first met Miss Denika at the end of summer last year. I spoke with her mom, Trina, quite a bit and discovered Denika was exactly like Miss Haven. She had just had surgery to remove her Ganglioneuroblastoma Tumor in the abdomen and her doctors were now trying to figure out ROHHAD.

Denika was flown from her hospital in Newfoundland to Toronto for evaluation.

Here is her private plane. Once evaluated in Toronto I was amazed to receive an email from her Endocrinologist asking for advise and info on what Haven had been doing. I immediately sent her an email back with a short synopsis of our treatments and the plan. Then I also encouraged her to speak with our doctors and discuss the best options for Denika. The next day our doctors called to ask if it was ok to speak to them on behalf of Haven. ABSOLUTELY. Next thing I knew Denika would be getting a port in place and would begin IVIG treatments.

Here is Miss Denika at her birthday party. She is so beautiful. She has been doing IVIG for a few months now. I keep in touch with her mom as best as I can. Life gets extremely hectic when you're running back and forth to an Oncology office for treatments. But Denika is doing great and I love seeing her photos.

We love you Trina and Denika.....

Josh Wooten - ROHHAD

2010-04-07T18:30:00.000-07:00

This is Vanessa (Josh's mom) and Josh. Last summer Josh received pacers in his chest to help him be able to stay off the vent longer. By the Fall he'd built up his body enough to be able to go out and hunt with his dad. We're extremely proud of Josh. He's done a great job.

In late January 2010 Josh spent quite a bit of time in the hospital. Constantly running fevers and having intense chest pains. Multiple CT scans and x-rays. Definitely not a fun way to start off the year.

After all the testing they were finally told he had H1N1 and double pneumonia. Keeping in the hospital for a long time. It's extremely hard when they get sick especially something as horrible as these.

Josh has recovered very well yet is still constantly hit with what "normal" people would call a cold that is entirely different for him. This year he, along with his family, welcomed his new nephew. Baby is just adorable. Josh is an amazing boy and an inspiration to everyone. Love to his family.

You can read up on Josh at his site: JOSHUA WOOTEN

Mason Byrom - ROHHAD Syndrome

2010-03-30T09:40:00.000-07:00

Aaaahhhh yes.....our sweet Mason! If you know Haven then you know Mason! He's like the son I haven't had. He's such a part of our family and Haven's best friend. This is a photo of Mason before ROHHAD.

The last few months have been crazy for Mr. Mason. In October his doctors had spoken with our doctors about the treatments Haven has done for her ROHHAD and some of the symptoms that had reversed on her.

Then in November Mason's doctors decided to start him on IVIG and High Dose Dexamethasone to start testing it out with him. He was having to be in the hospital 4 days a month for treatments. This was a lot for Mason and after 2 rounds they decided to let him do it at home.

At Christmas Mason received his very own Cow Tree for Christmas. He is a huge fan of cows and the entire tree was cows!

This is Mason on his IVIG at home. After a few rounds of HD Dex Mason went in to a seizure following his IVIG and was rushed to the hospital. He was found to have lesions on the brain possibly caused by high blood pressure due to HD Dex. The doctors immediately stopped his treatment of this drug and have continued with the IVIG.

After Mason last IVIG he was doing great....until a few days later when he came down with a cold that ultimately put him back in the ICU for a week. He had developed a viral infection in the lungs and then his sodium had dropped to an unhealthy scary level of 118. Normal is 135 - 145. This kept him in the hospital for a few extra days. Mason did finally make it home for St. Patty's day and sent us this gorgeous photo of him.

Mason has one more dose of IVIG and then will undergo a CO2 challenge to see if there are any results from this treatment. This will help the doctors to decide if they must go further or wait a bit.

I don't know what I would do without Mason and his mom Julie! I love the stories of his sister Cameron and his dad is another one on the "most amazing dad" list as he is with Mason for everything. There family is so similar to ours that I sometimes think we're related!

We love all of you and wouldn't be able to do this without you.

Jessica Haight - ROHHAD Syndrome

2010-03-30T09:21:00.000-07:00

JESSICA'S WEB SITE - http://jessicas-world-rohhad.blogspot.com/

Jessica started like any other child - healthy, happy, stubborn, melt your heart with a smile. Then around 4 years old she started sleeping a lot, gaining weight, wearing pull-ups again, and having what was initially diagnosed as sleep apnea and using a bi-pap at night. Nothing her parents did seemed to have any long term result.

Finally after lots of research, extensive testing, many doctors and 3 years they finally get a diagnosis - ROHHAD Syndrome.

Jessica traveled to Chicago to meet with doctors there and learn more about her syndrome. Going through even more testing and many more doctors Jessica was released after about a week and her doctors were informed of the severity of her syndrome.

Jessica is now 7 years old and was recently fitted for her wheel chair. Jessie lives in New York with her family and mother who is a nurse. Although you may think her mom may know what to do for her more than the other mom's but this syndrome just destroys all your normal mommy instincts and being medically trained can't contain your feelings of guilt. Jessica, like the other kids, just wants to go to school and play like the other kids. This syndrome just doesn't let them do that.

Mary, Jessica's mom, has become a great friend and although we've only known her a short time she's a welcomed addition to our family. You are doing a great job out there. We love Jessica and will be here with her for the journey!

Jenna - ROHHAD Syndrome

2010-03-29T09:36:00.000-07:00

I have known Miss Jenna and her mother Lisa for two years now. Jenna's ROHHAD has left her unable to talk after suffering through her fourth seizure. The above photo was Jenna and her brother during their Disney Make-A-Wish trip.

Jenna spent New Year's and her birthday in the PICU this year after coming down with Repiratory Syncytial Virus (RSV). RSV is very dangerous for those already suffering respiratory problems as severe as Jenna's. RSV can not be treated with an antibiotic and requires more oxygen be given.
I just love Jenna. She is having fun here with her brother - and although flat affect is a trait of ROHHAD you can still see the smile in her eyes.

Last Summer I shared a photo of Jenna with everyone...she had taken a trip to the beach. I am so overjoyed when I see these little ones out there enjoying life. They are so much stronger than I can ever imagine to be.

Miss Jenna just a couple weeks ago. She is doing so well and with Spring around the corner we hope to see more beautiful pictures of Jenna.

Thank you to Lisa for sharing your beautiful baby with all of us. We just can't get enough of her! :)

Love to all of you.

Alexis - POSSIBLE ROHHAD

2010-03-19T17:26:00.001-07:00

Alexis is new to our family. Her doctors haven't officially diagnosed her with ROHHAD as they are still trying to figure it all out and learn about it. But they are pretty certain that she does in fact have it. I put a chronological order of photos of for Alexis so you can see her change. The above photo is at 12 months.

This is Alexis at 2 years old.

This is Alexis at 3 years old. You can see the transformation between age 2 and 3.

Miss Alexis at age 4. She started seeing many doctors and having many scans done. They are slowly trying to piece the puzzle together. Alexis lives in Nebraska and has traveled to Mayo a few times a year and seen doctors there that also believe she has ROHHAD.

This is what Alexis' room has become.

Alexis turned 7 years old on March 18th. She now wears her mask to sleep and is constant work ups with her doctors. Alexis will have a tough road ahead as the doctors sort through her complex ROHHAD symptoms and work with her tumor at the brain stem.

I have only recently met her mother through our Facebook ROHHAD site. We talk almost every day and try to compare notes. There is a lot to learn when you are first diagnosed with ROHHAD and then once you learn about it you realize there isn't enough information. We're happy to welcome Alexis to our family but sad we had to meet her this way. We love all of you.

Niketa Brown - AUSTRALIA

2010-03-19T12:17:00.001-07:00

Niketa comes to us from Australia! The above photo is a picture of Niketa (left) in 2007 - right before ROHHAD hit. She was and still is a very active child. She loves to dance. But in 2008 something happened and Niketa change dramatically. She suddenly started gaining weight and her breathing was getting terrible. She ended up in the hospital ICU for over 11 months and wasn't allowed to come home for more than 2 hours a day and had to be with her nurse the entire time.

Finally in June 2009, Niketa came home and everything was changed. But she was finally able to start seeing her family and spending time with them and not have nurses surrounding her. This was Niketa's first night home in her own bed with all her machines.

A few months later Niketa had to go back in to the hospital for her lung function testing. She is in often for her MRIs and CT scans and meets regularly with all of her doctors.

Although Niketa has ROHHAD she is not letting it slow her down. This girl is still out there dancing and competing. She even won first place in her school dance competition!

She has also gotten in to modeling for sleep study commercials! :) She's probably the best model I've seen with wires and straps! She definitely keeps a great attitude about it.

This is Niketa during her last sleep study. Again, I still don't know how they expect the kids to sleep and give results with wires and tubes all over them.

Niketa recently had to have a CT scan which was more difficult than it normally is. A ROHHAD child has a tendency to have "frozen" limbs - that's what we call them. They suffer from thermal dysregulation which causes the limbs to be very very cold. This doesn't help the veins when trying to get a needle in them for an IV. The vessels constrict making it too tight to get to. Finally they did the CT without the contrast --- we are still awaiting results.

We love you Niketa and can't wait to see your next recital in photos! Keep up the great work mom, you're doing awesome! Lots of love!

Noreen - NETHERLANDS

2010-03-19T11:56:00.000-07:00

Noreen was born March 18th, 1999. That's right - she just celebrated her 11th birthday YESTERDAY! Noreen lives in the Netherlands with her family and was diagnosed with ROHHAD Syndrome.

When I first started talking with her mother she was reasearching and trying to find out everything she could - like many of us. You are given a disease you've never heard of and neither has anyone else. Noreen has done great this year. She got a new bike and has lost 13 pounds! Amazing for any ROHHAD child. I sure wish I could figure out her secret!

Noreen wears a nasal cannula at night to help with her O2 levels.

Noreen now wears a wrist-pulse that checks her oxygen and heart rate 24 hours a day. She will go back in for another MRI this May and we'll get some updates from her mom. Their family is also in the process of planning their summer vacation to Portugal!!!

Have a great Summer Noreen -- WE LOVE YOU - Have a great birthday! We'll bug mom for some pictures of your vacation!

Sophia Adamo - ROHHAD Syndrome

2010-03-18T08:35:00.000-07:00

Sophia was born October 19th, 2004. She was diagnosed with ROHHAD Syndrome on December 18th, 2008, and her mom began researching this unknown disease. She stumbled upon Haven's site and quickly we began to talk and share information. She joined our family with open arms.

Sophie now battling this officially for over 2 years has seen her share of many hospital stays, sleep studies, pokes of needles, blood taken. She has endured almost a dozen hospital stays for Pneumonia alone in the past two years.

From March 2009 through January 2010 Sophia has not been able to lose the weight even though on a strict diet - as all ROHHAD children are. She has grown 1/2" and she had a wonderful 5th princess birthday.

As of last week Sophia is now on 12 different medications a day and was recently put on blood pressure medication and is in constant visits with her Cardiologist.

Like all of our families - Sophia suffers from a life-threatening disease that at any minute could take her life. Due to the unknown factor of this disease she has been turned down from Make-A-Wish but her mom continues to push her paperwork through in hopes of giving Sophia a vacation from doctors and hospitals and show her what being a kid is like.

I have watched Sophia grow and love this little girl. Her mother has endured so much with trying to work and take Sophia to the doctors and hospitals on her own. Not to mention she is 1 of 6 children. We don't know how her mom does it but we're here to support her!

Sophia has a site on Caringbridge which her mother updates frequently - I urge you to take a few minutes out of your day and read about our Sophia.

WE LOVE YOU SOPHIA AND MAUREEN!!

Check Sophia out HERE or click on any one of her photos!

Jessica Magnus --- Ganglioneuroblastoma Cancer and Progressive Neuromuscular Scoliosis

2010-03-17T20:10:00.000-07:00

GANGLIONEUROBLASTOMA stage 3 and progressive neuromuscular scoliosis of 59 degrees

Jessica was born on September 18th, 2001. In December 2005, Jessica was diagnosed with Stage 3 Ganglioneuroblastoma Cancer - both malignant and benign tumor that was taking up most of her chest and wrapped around her spine.

Jessica's x-rays - showing curve of spine and Ganglioneuroblastoma Tumor

Today Jessica continues her fight for life. She wears her new Cheneau brace because doctors were only able to remove 25% of her tumor and during that surgery it caused a major curve in her spine. If her tumor continues to grow it could crush her spinal cord causing her to become paralyzed. Jessie has been all over Europe visiting doctors and misses a lot of school due to her cancer and scoliosis. Even with missing so much she has done very well in both the UK and Czech Republic!

Jessica is trying to get to the US to meet with experts here. Please visit her sites and learn about her. I became friends with her mother, Stana, immediately after Haven was diagnosed. We have remained in close contact since. I am lucky to have these two beauties in my life.

Please visit Jessica's site by clicking her photos or HERE! We love you Jessie and Stana!

Charlize Joliat - Beautiful Angel

2010-03-17T20:01:00.000-07:00

Charlize was born April 22, 2004. We only met Charlize last Summer when we read about her story in a newspaper in Canada - The Sudbury Star. As soon as I saw it I sent it on to the other mom's. Instantly we all fell in love and watched her story bloom. Her family began taking donations immediately to get Charlize in to another hospital to help her. After a long five months of fighting and living in a hospital Charlize passed away on November 20, 2009.

I can't express how this shattered our small ROHHAD family and how quickly we all prayed for her parents.

Charlize joins other beautiful angels in the sky - Leigh Ann - to watch over our children and guide us in the right direction.

We still think of Charlize every day, however, I am a better person having met this little girl even if it was only on line. We love you Charlize.

Home from SickKids Hospital

2009-12-16T09:26:00.001-08:00

Photo of Denika during one of her tests in Toronto

We're very happy that Denika is home for the holidays. They found a Ganglioneuroblastoma tumor in her abdomen and later found her to have ROHHAD Sydrome. She was flown from her home in Newfoundland to Toronto to be seen by the doctors there. After many tests and consulting with Haven's doctors Denika returned home at the very end of November.

MERRY CHRISTMAS DENIKA!!!! We are so happy you are back home!

Susannah - Adrenal Cushing's Syndrome

2009-11-23T18:03:00.000-08:00

Miss Susannah needs your prayers!

I met Susannah and her mom Jess about 6 or so months ago. I happened upon a forum of a mom desperately trying to find out what was going on with her daughter. The story sounded exactly like a ROHHAD child but after months of testing and doctors Susannah found herself at NIH having surgery on her Adrenal Glands for Cushing's Syndrome.

She made it through surgery and has been home since. The photo above is her first day of Kindergarten.

Tonight I learned from her mom that Susannah is back in the hospital.

Last night her parents went to put her to bed and she was ice cold. Three temperature checks all ranging between 90 and 93 degrees - a sign of hypothermia while relaxing in her house! However, Susannah was feeling great and had no complaints.

Once at the ER the checked Susannah's sodium level and it was low at 121. After 7 pokes of a needle to get her blood they finally gave up and gave her 5 sodium chloride tablets. It took a few hours to get her sodium back up to a healthy level of 133 (135 - 145 is normal for a child).

They were able to get some blood and the family is currently waiting for good news. Her Endocrinologist doesn't believe there is an infection - it is thought that she is experiencing Thermal Dysregulation - which she had prior to her surgery.

Please send some good thoughts to Susannah - we want to get her home for Thanksgiving!

We love you Sus.....can't wait for you to see Haven's new puppy! I'll send pictures to your mom! :)

Halloween Friends

2009-11-02T06:02:00.000-08:00

Sophia and her sister!

Mason and his sister Cameron

Vanessa and her son Josh

Junior -- dressed up as a Ninja!

Summer 2009

2009-10-23T18:40:00.001-07:00

So we have kept in contact with our friends as much as we could while in isolation all summer and most recently this month. Time just slips by and you don't even realize it! We met some new ROHHAD children and we continued to learn of our disease through talking with each other. Comparing notes and symptoms and treatments tried by doctors is a great way to learn how to beat this illness.

We are so happy to be able to share our story and the other children. Finding out our daughter has cancer was devastating and then to find out she also has a disease so rare that no one really knows about it and there is no treatment or cure and this disease can kill is unimaginable. One night you go to sleep happy and the next day you wake up and your child is slowly passing and no one knows what to do.

Together the moms of ROHHAD children have joined together to fight this disease and hope you will continue to share our story with your friends and family and that they share it. Help our children not be forgotten. Please read our stories:

NOREEN
One of our newest friends, Noreen. I met her mother a few weeks ago as she emailed me wanting more information on ROHHAD because her daughter had been diagnosed. She lives in the Netherlands and her doctors have been in contact with the doctors from France that originally wrote about ROHHADNET.

Noreen is 10 years old and all of her symptoms began to show about the same time Haven's did - Early infancy.
As I learn more about Noreen and her mom Alieke I will be happy to share. There is so much to know. We hope all of you are doing well.

SHELBY
I would like to introduce Shelby. She lives in California and has been diagnosed with ROHHAD Syndrome. We just learned of Shelby this summer while we were at the hospital. My dear friend Maureen, Sophia's mom, introduced me to her story. We do not know much about Shelby or her story yet but I am excited to talk to her mom and learn more about all of them.

Shelby has been battling a serious case of the flu. A ROHHAD child getting sick with anything is a very scary and dangerous combination. Shelby had IV medication for 5 days and is slowly recovering at home.

We wish you well Shelby and hope to be in touch soon.

CHARLIZE JOLIAT

I introduce Charlize Joliat. If you remember I found this article in Canada about a girl diagnosed with ROHHAD Syndrome. This is that beautiful little girl.

Originally tested for Kawasaki Disease but when that came back negative she began testing for Cushings Syndrome in December 2008. In May 2009 they were still testing Cushings when she began to have ventilation issues. While in the hospital she contracted Rota Virus and finally on July 17th Cushings was ruled out. On July 18th they began working with Chicago and Dr. Weese-Mayer's team. She was tested for PHOX2B - which came back negative and confirming ROHHAD Syndrome.

Since July 23rd she has been on a 1,000 calorie diet.

Charlize in the hospital. Their family is preparing for the trip to Chicago and making sure Charlize is healthy enough to travel. The doctors in Chicago are suggesting she have a tracheotomy before traveling but her doctors believe her bi-pap will suffice.

Charlize is required to wear her oxygen mask at all times. We have not heard back from her mother as to when they will travel to Chicago. We wish them good news and safe travels. You can read more on Charlize at: caringbridge.com/visit/charlizejoliat

JENNA
As I was locked away this summer with Haven and Kris in isolation I was not able to keep in good contact with all the moms. But we did receive a sweet email from Lisa, Jenna's mom, that she was able to go to the beach for the first time in 3 years since being diagnosed with ROHHAD. Jenna has been on a ventilator since being diagnosed and is unable to speak due to the multiple seizures that ROHHAD has caused.

I was very excited to learn that Jenna went to the beach and had a great time. I love to hear that. We hope to hear more from Lisa and Jenna. Love you all.

NIKETA BROWN

This is Nikki and her sister Tiffany from Australia. This photo was of Niketa right before she got sick and went in to the hospital. Beautiful coloring girls!

Soon after Niketa ended up in the hospital and this is when I met her mother Karen. She had been in the hospital for some time and it was hard to catch Karen as she was back and forth seeing her daughter and still taking care of the rest of the family. This photo shows Niketa getting ready for her MIB scan.

Niketa (or Nikki) spent 11 months and 8 days in the hospital. Can you even imagine? I was heartbroken for Karen. I couldn't do it. Nikki stayed strong and so did her mother and family. Periodically we'd get an update from Karen that all was good but she couldn't talk. This photo shows Nikki doing her lung function testing. We're very happy Karen has able to take some time and enjoy life lately.

Nikki has finally been released from the hospital and is home with her family. She is required to sleep with a mask at night but we hear she is doing well considering. I couldn't imagine how Nikki managed that length of time in the hospital. We love you all and we're glad you're back home!!!

MASON BYROM

Mason really had us all worried this summer with a scary night of dangerously low oxygen levels and increase CO2 levels. He was rushed to the hospital at the beginning of the summer only to find out that he had Pneumonia. Very dangerous when already on a ventilator to breathe. Mason was kept in isolation over 2 weeks.

He was sent home with an Oxygen tank and it still remains in his room. Mason is hooked up to the ventilator when sleeping. However, during his stay at the hospital and for a few long days afterwards he had to stay hooked up 24 hours a day with extra oxygen.

Although Mason had a rough start to his summer he sure did make the best of it all. Mason became a Chef for a day and went to lots of baseball games. He's a huge Cardinals fan out there in St. Louis! Mason also celebrated a huge 5th birthday this summer. HAPPY BIRTHDAY MR. MASON!

A few weeks ago Mason had another bout with an illness that had him rushed to the hospital. He was in for a few days on oxygen and monitored closely. Once home he rested for a few days while staying on his ventilator. He is now back in school and has even had a meeting with Make-A-Wish. We're excited to see what Mason wishes for!!!! Check up on Mason at his site: caringbridge.com/visit/masonbyrom

SOPHIA ADAMO
Miss Sophia had a rough beginning of the year that led in to a rocky start to the summer. She had Pneumonia three times before the start of the summer and her blood pressure and heart rate began to climb steadily. Sophia was in the hospital in July to undergo an Adrenal Gland procedure. Some children with ROHHAD have developed other life-threatening illness caused by ROHHAD and everything must constantly be checked.

Although Sophia had another occurrence with Pneumonia she was able to have some fun at the lake and hanging out with her family this summer. Sophia also began preschool this year - above is the photo from her first day of school.

Miss Sophia celebrated her birthday recently. Turning the big 5! HAPPY BIRTHDAY SOPHIA! During her birthday party Sophia began not feeling so great and was back in the hospital to find out that once again she has Pneumonia. She has a great team of doctors and her mom is awesome about getting her to her appointments and keeping us all updated! You can read more about Sophia at her site: caringbridge.com/visit/sophiaadamo Love to all of you.

JOSH WOOTEN

Josh had a huge summer. Being on a ventilator for many years 24 hours a day 7 days a week with minimal breaks Josh was finally old enough and ready to have surgery to insert a pacer that will help him breathe and let him be free from the ventilator.

This is the diagram of the breathing pacers and how they work.

Slowly over the summer Josh has worked on his breathing and making his diaphragm stronger with every breath he takes. He has done an awesome job and so has his mom Vanessa. It is amazing to see photos of him at the shooting range, bowling, and even playing basketball. We're proud of you Josh! Josh is also about to become an uncle! What a great summer. You can read all about Josh at his mom's blog site: vwootenworld.blogspot.com

UPDATES

2009-10-22T06:12:00.000-07:00

I will be updating on all of Haven's friends this evening. Please check back to learn what they have been doing and to get all their web sites! :)

Update on Susannah - Cushings Syndrome

2009-04-20T19:07:00.000-07:00

Hi Everyone....I'm so excited to get an email from Jess - Susannah's mom - today. I have been keeping updated on Susannah's recovery through her web site. It's been about 2 weeks since her surgery and thought I'd share her mom's happy post from their site to all of you!

Dear Family and Friends,

We are home and and getting caught up on our rest. Susannah is doing fantastic. She went to church and Sunday School over the weekend and is getting back into the groove of the normal routine. She still seems to get tired pretty quick, but I have to keep reminding myself, it was less than two weeks ago that she had MAJOR surgery.

The final visit from Dr. Stratakis last Friday was everything we hoped for. He brought a copy of the pathology report on the removed adrenal glands. After dissection and staining they showed the rare nodules on both the cortex and medulla (outside and inside) of the glands. This was exactly what we hoped to see. It also showed they weren't the kind that could lead to a more serious disease called Carney's Complex, so this was also excellent news.

Dr. Stratakis says he now expects to see her height shoot up and her weight go down over the next year. He wants to see her back in September for just a couple days of blood work. He also wants me to keep in contact with him about her fevers....he's "fascinated" that they've stopped now that the cortisol is fully weaned back. He will also see her again in a year for another follow-up. We've been educated on what to do in times of sickness or injury to supplement her cortisol, and reminded, numerous times, that adrenal insufficency is a very very dangerous thing. However, if you medicate correctly, you can live a completely normal life.

We are so excited for that to start for Susannah. We will keep you up to date with her exciting health and physical milestones as she recovers.

Love to all - Jess

Easter pics from friends

2009-04-16T18:00:00.001-07:00

Check out some Easter pics we received from our friends!!!!

Julie sent us a picture of Mason and Cameron with her on Easter. Their Aunt from Virginia came out to visit them.

Here is Miss Sophia on Easter with her new bunny.

Sophia's school is having a fundraiser for her - you can read about it on her site and help with making a donation.

The date's are May 6th and 7th and the children at Busy Bee will be jumping for approximately 15 minutes. There is a flat sponsor donation of $5.00 to make it easier for the children. During the 2 day event Maureen will be at the daycare with Sophia. You can get the letter and sponsor sheet that has been handed out from the school by contacting Maureen (Sophia's mom).

Check Out Our Friends

2009-04-08T20:05:00.000-07:00

Junior's Amazing Journey
Loving, Laughing, Learning, and Living Life to the Fullest

Leigh Ann - Age 7 1/2 - ROHHAD ANGEL

Tuesday - NEUROBLASTOMA ANGEL

Tuesday's Mom's Blog

Joanna - Spina Bifida

Mason Byrom - 4 Years Old - ROHHAD

Sophia Adamo - 4 Years Old - ROHHAD

Josh Wooten - 12 Years Old - ROHHAD

Susannah - 5 1/2 Years Old - Cushing's Syndrome - PPNAD

Susannah - Cushing's Syndrome - Haven's Newest Friend

2009-04-07T07:33:00.000-07:00

PLEASE give lots of prayers, thoughts, good wishes (however you want to do it) to Susannah Wednesday morning. She is in Bethesda undergoing a bilateral adrenalectomy for PPNAD - a rare form of adrenal Cushing's Syndrome.

Susannah is 5 1/2 years old.

Isn't she just adorable!!! This is Susannah - you can visit her web site at: http://www.carepages.com/carepages/susannahzahn2007. You will have to become a member to see her but that really is just an easy step and took me 30 seconds.

There is an amazing story as to how I connected with Susannah and her mom, Jessie. Somehow in my research and scouring of the Internet I found a webforum called webdiagnosis. The post was from over 2 years ago and it was the plea of a desperate mother asking for help with her daughter. She had all these crazy symptoms and no one knew what could be going on with her daughter. After reading everything she sounded very similar to Haven and the many other wonderful chidren I know.

So I posted a brief story about Haven and gave her my email address. Never in a million years did I expect to hear from the mom or even think that email was good anymore. BUT I DID.

Tonight - I received an email from Jess telling me a brief story of her daughter Susannah.

I can't wait to learn more about Susannah.

Love to Mason!!!

2009-04-06T07:28:00.000-07:00

This morning I received an email from our friend Julie - MASON'S MOM - He was sick all night and they weren't able to sleep at all. Mason's dad stayed home with him today as he was ordered from the doctors to stay home on the vent for the next few days. I was so sad to hear that Mason's oxygen was very low and he was sick. Around 5am when he started to get ready for school is O2 fell in to the 70's and slowly climbed in to the 80's. Please visit him at his site and let him know you are thinking of him. I worry about all of our kids all the time and to hear that one of them is sick really bothers me.

On top of that - I went to lunch with Emily for my birthday and came back to my desk and there was a beautiful package. After looking around for a few seconds I found the card. Mason sent me the most beautiful package of candy, fruit, and cheese/crackers!!!! I was told the boxes were for Haven. Seems like Haven has enjoyed my birthday as much as I have!

We love you Mason! :) Thank you so much for the gift.

ROHHAD: Mason, Sophia, and Jenna

2009-03-30T07:30:00.000-07:00

Hey everyone....some of our most precious gifts out there have been having some health scares this past couple of weeks and I'm asking everyone for a few minutes of their day to think of these three. I have received 3 emails that are just terrifying and I know scary for the parents.

Mason had to be rushed to the ER on March 22nd around 1am for a rapid spike in his CO2 levels and no matter what they tried they couldn't get them lowered. At the same time his heart rate kept dropping and went down in to the 50's while is O2 monitor kept alarming. Mason will be having a sleep study done this week and will be visiting Cardiology next Monday. His parents are handling everything well and are watching our Mason very close.

Jenna's mom Lisa contacted me and on Monday March 23rd Jenna had to be rushed to the hospital and was admitted to the PICU. A rash called Petechia was found on Jenna's leg and the doctors with lots of blood tests finding that she had a viral infection, low white blood cells, and low platelet count. Her oxygen levels dropped causing her to stay in the hospital for a week on oxygen and being monitored. Jenna is on vent 24/7. We are waiting on word from her mother as Jenna had more testing done on Monday.

Today I received an email from Maureen about Sophia. She was at work and received a phone call from Sophia's daycare that her breathing was extremely labored and she was very red faced. Sophia had her tonsils and adenoids removed in February in an emergency surgery after a sleep study showed extreme sleep apnea. Once at the hospital and after testing Sophia has been found to have Pneumonia. This is her 4th bout of Pneumonia since December 2008. She is also being watched for high blood pressure and will be visiting Pulmonary and Cardiology again, as well as, her Urologist for her recent UTI.

Please take a moment and wish our babies back to health. We worry about them all every day. Thank you to the mom's for keeping us updated on the children. We love you all.

Mason makes news for ROHHAD! KSDK St. Louis

2009-03-17T07:32:00.000-07:00

Mason on KSDK St. Louis News

Check out Mason on TV!!! He's famous and he's cute!!!

You can read his entire article HERE!!!

Great job Mason!

Joanna - Spina Bifida - Haven's newest friend

2009-03-15T07:35:00.000-07:00

This is Joanna - She is one of Haven's newest friend's - and mom's friend. Joanna has Spina Bifida and I met her mother through a nice woman that sent letters to Haven while she was on the MACS site in January. Joanna was featured on there as well.

I wanted to share her site with you and will place her link to the side where I have Haven's friends listed.

You can click on Joanna's picture to go to her web site or click HERE.

Leigh Ann - Our Angel - ROHHAD Child

2009-03-08T07:44:00.000-07:00

Who is this beautiful angel? She is most definitely an angel that I am truly excited to tell the world about. This is a dedication to Leigh Ann from Kentucky.

Leigh Ann was born an only child via c-section on April 19, 1990. She weighed 9lbs and was 20 inches long. Leigh Ann was born a healthy, happy child with an amazing shine in her eyes. At around he age of 1 1/2 years old (January 1992) Leigh Ann began to show signs of Hypothalamic Dysfunction and rapid weight gain. In October 1992, she experienced her first Cardiorespiratory Arrest and at this time she had full blown UNDIAGNOSED ROHHAD. Leigh Ann stopped breathing while at day care and at the hospital she went in to code-blue.

Between birth and 1992 doctors failed to recognize any symptoms that her mom was telling them. Diagnosis: too much food.

In 1992, ROHHAD was not known at all. Doctors blamed her breathing problems on obesity and obstructive sleep apnea - they never checked for central Hypoventilation. Because nothing was known she went without proper breathing treatment for over a year. Leigh Ann's endocrinologist and pulmonologist did mention Hypothalamic Dysfunction but since her MRI of the brain was normal they dismissed this. Even though Leigh Ann had abnormal endocrine results - passed off as medication related.

Leigh Ann spent 3 weeks in the hospital when finally being discharged with: Medical problems caused by home environment. Diet should be 1,200 calories max a day. Her mom fed her less than 1,200 a day and she was STILL gaining weight.

November 1992, she was again air lifted to a hospital, this time Indiana, for respiratory problems. She spent 9 days in the hospital with the doctors repeating what the hospital said in Kentucky. They left with a C-PAP and oxygen for her to use to breathe.

Leigh Ann's parents were told to be patient that at some point a tumor should pop up on the MRI and then doctors will know what to do. THIS NEVER HAPPENED. All MRI's were still normal.

January 1993, Leigh Ann went in for a sleep study. At this time they were told she needed to have a Tracheotomy and the surgery was performed. Diagnosing Leigh Ann with Hypothalamic Dysfunction....but they said "There is something missing. Something we don't understand in ther sleep study results".

Still nothing known or mentioned about Central Hypoventilation or Central Apnea. But doctors said if Leigh Ann could lose weight she would be all better --- the parents kept trying.

By November 1993, the hospital in Indiana finally finds the Central Hypoventilation syndrome while being treated for Pneumonia. When Leigh Ann was finally diagnosed, she had undergone so much trauma and the delay of treatment caused further brain damage and neurological deficits.

November 1993 until February 1994 Leigh Ann remained in the hospital before being transferred to a neurological rehab hospital in Michigan.

April 1994, Leigh Ann returns back home from the Michigan hospital. By this time Leigh Ann had stopped growing. With her mom no longer working and dad always at work everything was extremely stressful and Leigh Ann needed everything they could give.

Leigh Ann began to have frequent seizures lasting 45 minutes at a time due to sodium levels being too high. Her Cortisol levels became a major issue during anesthesia, she had Tertiary Hypothyroidism #3 and elevated Prolactin levels. They battled this for YEARS!

In November 1997 she underwent Fundoplication surgery for vomiting. Leigh Ann had low body temperatures and spent time in the hospital for hypothermia, her behavior changes were drastic and made it difficult for her to stay connected to her ventilator.

Leigh Ann - 6 Years Old

Leigh Ann 7 1/2 Years Old

Leigh Ann was 40 inches tall and almost 8 years old when she passed away on February 19, 1998. At the time of her death she was finally diagnosed with Late-Onset Central Hypoventilation Syndrome/Hypothalamic Dysfunction --- now known as ROHHAD.

I have read Leigh Ann's story over and over. Her mom wrote to me in January - right before Haven's 5th birthday. I have cried and cried over this letter and the pictures are just beautiful.

Leigh Ann - I know you are up there. You are our Angel In The Sky and you are in our hearts. You were the first of us to have ROHHAD and I know you are watching our children and helping to guide us. We miss you terribly. I want you to know - everything you and your parents went through is not lost.....We are hearing your story and you are helping us teach doctors and people about ROHHAD.

All our love to you and all my love to your mom and dad. Take care and sweet kisses!

Nikki - ROHHAD - Australia

2008-12-21T07:40:00.000-08:00

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

2008-12-17T07:42:00.000-08:00

Mason - ROHHAD - St. Louis

2008-12-11T07:43:00.000-08:00

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

2008-12-10T07:46:00.000-08:00

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

2008-12-05T07:47:00.000-08:00

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.