I found out some really interesting information about a possible treatment assistance (not a full treatment) today regarding a pharmacological chaperone concept. I’ll share more of the details once they go public. However, after learning more, it may not be advantageous for Hannah because of her level of enzyme production, but I’m still going to […]
[Continue reading...]My first “paid” writing gig!
5 Mar by
My first paid article has been published 🙂 Hopefully this will be the beginning of a new career for me! (I know, I have a long way to go, but this is a start!) Parenting a child with a rare medical diagnosis: Proactive parenting tips SheKnows, Pregnancy and Baby section
[Continue reading...]Big Medical Day tomorrow
5 Mar by
Would you believe that Hannah is my easiest child to take care of tomorrow (Thursday)? Abby has had two ear infections for over a month now. She had a bloody granuloma in her right ear that had to be suctioned out a few weeks ago. She did Omnicef for two weeks, and it didn’t help. […]
[Continue reading...]Whoo hoo! Gotta love an ear infection!
4 Mar by
Hannah just has an ear infection in the left ear. So it most likely is draining down into the back of her throat while she is sleeping, and that is what is making her cough and wake up. She has always had a little phlegmy issue at nighttime on her back, so this just exacerbated […]
[Continue reading...]Nighttime Congestion
4 Mar by
Hannah has always had some type of nighttime sleeping issues similar to snoring. However, over the last few weeks, it has gotten to be more bothersome for her. Over the last few nights, she has gotten so uncomfortable to the point where she wakes herself up. The weird thing is that she doesn’t APPEAR to […]
[Continue reading...]Sometimes being rare just, well, sucks…
3 Mar by
It is so depressing how little support there is for Gaucher’s Disease type 2 and type 3. Seriously. I have only been able to find about a dozen other families who have had children with GD2 or GD3. Sadly, most of their children have already passed away. I can think of maybe 4 other families […]
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