First let me explain why I would call it ROHHAD updates instead of just updates. Yahoo and Google propogate the web site by the title you list in the blog post. Therefore having a generic title will not help the world learn about ROHHAD. You will also notice that ROHHAD is in almost every post label even if it is not about ROHHAD on that particular day! So with that said - here are a few updates on Miss Haven and all her friends.
Haven: She has had a cough that we've been watching for the past few days. She has not really been sleeping at night. Friday she was up until 1am and then had a horrible sleep walking experience around 3am and then was back up at 5am on Saturday morning.
Saturday was stressful for us as she slept. She was breathing very heavily and snoring a lot. I have a big humidifier in her room but it wasn't helping. We took shifts checking on her every hour in the night. At 2am I found her in the bathroom. She was sleep walking and had fallen. I got her back to her room and back in bed.
Sunday was even more stressful. She was breathing too quiet and very smooth. Why is this stressful? Because it's not normal and we're not used to it. We're used to loud breathing. So since I couldn't hear her breathing on the monitor we were checking on her even more!
Monday night she was very clingy and needy and her dad slept with her. She usually picks one of us to be the favorite for the day and Monday was dad's turn. So I am up writing!
Mason: Mason is doing well. We received some cute photos of him and his sister the other day! Mason will be traveling to Chicago to meet with Dr. Weese-Mayer on January 12th. We're all excited for his visit. I keep in close contact with his mom, Julie!
Josh: Josh is in Houston for a few tests and MRI's. We're hoping he's back home by Christmas. Please check out Josh's site for his updates. We'll be checking in with Vanessa while he's going through his testing.
Sophia: Sophia was scheduled to do a sleep study this past Sunday but the snow in the north has pushed her appointment out. She met with Pulmonology and concluded that Sophia does not have asthma. She will do her sleep study immediately after Christmas and will have a CT scan of her abdomen (due to severe pains in the abdomen and back) and then will go on to full MRI.
Karen: Karen is anxiously awaiting the arrival of her daughter Nikki. She will be home for Christmas lunch and then will head back to the hospital. We're hoping Nikki will be released from the hospital soon to be in her house with her family.
New Person: I found a new person yesterday who's daughter is 8 years old and was diagnosed with ROHHAD in January 2008. I have emailed and even had some help translating the Spanish and writing a note back in Spanish! Thank you to my friends in South America! I hope to hear from her soon and will let everyone else know about her.
WE WISH EVERYONE A MERRY CHRISTMAS!
We'll be around if you need us. Love to all!
M
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
Josh and I *did* make it home in time for Christmas. We drove home from Houston and got here about 6:30PM Tuesday Dec 23rd. We don't have any results from the tests, but at least Joshua made it through the general anesthesia without trouble. We were worried about it because these doctors taking care of him during the procedure are not too versed with ROHHAD and I would not be allowed in during the MRIs (although I was as close by as they'd let me get - just in case).
ReplyDeleteMerry Christmas Haven and family - I hope your breathing issues get better and quick!!