Friday, January 16, 2009

ROHHAD Updates

Well I haven't updated everyone in a while on all the angels with ROHHAD. There are quite a few things happening. I'll start with my baby first!

Haven with a Paula Deen autographed picture

HAVEN: She is at the hospital right now getting her levels checked and has a full day of chemo. They will be meeting with her doctor to discuss how everything is going. They will also be discussing possible back surgery for Haven, upcoming eye surgery, upcoming pulomonology appointment and anything we've noticed while on this daily chemo. Haven is currently sleeping about 4 hours a night with constant wake ups and major pottying problems. She has gained 4 lbs since the beginning of December and 2 lbs in just the past 12 days. I have been keeping Haven's FLICKR site updated with photos from years ago to now. We're also excited to have Haven featured on MAKE A CHILD SMILE for January. We're working on her birthday party for next weekend and then we're off to Disney for a week!

Mason and his dad on New Years Eve

MASON: I talk with his mom daily! He is doing pretty well. He was scheduled to see Dr. Weese-Mayer on January 12th but that fell through with insurance not accepting. ROHHAD is a rough syndrome - no one knows about it and insurances don't want to pay for something that isn't known about. Mason has been slightly congested and since he is on the ventilator whenever he sleeps there house can get crazy! I love the stories. Every time he coughs or sneezes his ventilator alarm goes off and everyone is immediately in his room. They are on the same schedule as we are...wake up about 4 to 5 times a night. Funny story: Mason was sleep walking about a week or so ago and they woke up with alarms going off and all this craziness. Mason remained connected to the ventilator and dragged it down the hallway with him. I could not stop laughing.....I know what we go through at night and I could imagine waking up to all that! We also found out that Mason is a huge fan of Minnie Mouse! :) His baby sister, Cameron, is always stealing his Minnie. PS: I'm pushing Julie to get a site up for Mason!!!

Sophia and her big sister

SOPHIA: Miss Sophia has had a REALLY bad time through the holidays and beginning of the new year. I keep in touch with her mom as her schedule allows. On Dec. 27 Sophia had her sleep study and slept the same as at home. Waking about every hour, talking and crying out in her sleep and as she normally does everyday, woke up at 5:30am and threw up. On Dec. 30th Sophia had her MRI for the full body - to locate any masses. This trip ended up lasting 6 days in the hospital for Sophia. The conclusion of severe sleep apnea led them to rush Sophia into surgery to remove her tonsils and adnoids. Due to her low oxygen level Sophia remained on oxygen most of the time. During the MRI they noticed that Sophia's lung was full of fluid and was essentially getting squished. They suctioned it out and then again during surgery they had to suction it out again. Today Sophia is doing a bit better. She has another sleep study at the end of February, meeting with behavioural medicine. Her Cortisol levels and Prolactin levels have been pretty high so they are waiting on word regarding those. You can check out Sophia's web site HERE or on the side bar of Haven's.

Josh and his two cousins

JOSHUA: As you know - just at the holidays Josh was headed to the hospital for some major testing and meeting with his Cardiologist. It seems as though Josh has developed a pretty major sinus infection that alerted the doctors to start a test for Cystic Fibrosis. They don't believe he has CF but it's definitely best to rule it out - who knows what this syndrome brings with it. His Pulmonary tests showed more evidence of airway obstruction and he will now also use a steroid inhalent. Josh is on the ventilator 24 hours a day. He is allowed to take small breaks from the ventilator but he is watched closely. He has had a few high temperatures over the past week. We're constantly checking in on Vanessa's blog to make sure Josh is doing well and the entire family. They have some great photos up that are awesome. I love to see everyone.

NIKKI: I have not heard from Nikki's mom in Australia since right before the holidays. We hope to hear from her soon! Hope all is well down there and Nikki is home or on her way home.

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