We have had some ups and downs this month. Mackenna has been rolling around but the other day she fully pushed her head off the ground and looked around. I usually have to put her wight on her forearms in order to get her up. Mackennas core is getting stronger. She is sitting in the bumpo with some support and we are working on head control. Now the downside. We went for a well visit and her head control is really equivalent to a 3 month old. Most of the time I tell myself that she will get there in her own time but sometimes out of nowhere you get slammed with disappointment. In positive terms, she is staying in the baby stage so I can enjoy it a little longer. Mackenna also had her sleep study and failed. Her apnea is worse. Therefore the advice is to stop GH until we see an ENT. The ENT will then decide if we need to remove her tonsils and adenoids. We have an appointment on September 2nd. With this information, I forwarded it to Dr. Miller. This is where having too many doctors gets a little tricky. Dr. Miller does not want us to stop until she sees the sleep study. So we are following her advice right now. I feel the constant struggle of is this what we should be doing or should I just ask Dr. Miller. Too bad we just couldnt see her all the time. Some other news, I am a little hesitant to share and watch is that 20/20 is doing a story on PWS both genetic and acquired. What makes me nervous is now I am watching this as a parent of an infant with PWS so it terrifies me. As we all know the news likes to make the story bigger than it may be, but this is insight to the world we could live in in the very near future. So with that I share the info with you: PWSA (USA) announces a story on PWS to be aired this Friday by ABC’s 20/20 We just got word from the producer that 20/20 will air the story they have been working on this Friday at 10 PM Eastern time. It features a family who has a 14-year-old daughter with Prader-Willi syndrome, and another family who have a child with hypothalamic obesity (what we call acquired PWS). At this point he states the name of the program will be, “Appetite for Destruction”. To alert new families, and to remind the old-timers, this type of show is usually very heavy hitting. The reason, of course, is to make it interesting enough for the general public to want to watch. We have no control over the outcome. On the positive side, it does bring massive awareness of the syndrome, and there is usually positive connections after the show airs. Warm regards, Janalee Heinemann, MSW Director of Research & Medical Affairs PWSA (USA) Vice President, IPWSO
Posted on: Wed, 13 Aug 2014 22:00:42 +0000
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