Ethan and Abigail start school in two weeks. Yay! This year is going to be a very interesting one because Abigail will be starting Kindergarten at “her brother’s school,” and Ethan will be going into third grade (of which he is taking the gifted and talented math and science courses). I am so ready for […]
[Continue reading...]Hannah and her global developmental delays at 12 months
8 Aug by
When I’m with Hannah, and there aren’t other kids around (which is often), I forget or cast aside the fact that she has global developmental delays. She’s just Hannah. But then I see her around other children, like at her birthday party, and I can see how delayed she really is and in so many […]
[Continue reading...]My man…the best in the world
8 Aug by
Having Hannah in my life has really made me take a step back and reevaluate so many things in my life. Watching the struggles she has faced and how it has affected our family as a whole has really opened my eyes. When they say “children are a gift,” it means more know than ever, […]
[Continue reading...]Uncoupling between CD1d upregulation induced by retinoic acid and conduritol-B-epoxide and iNKT cell responsiveness
8 Aug by
http://www.ncbi.nlm.nih.gov/pubmed/19651460?dopt=Abstract IBMC – Instituto de Biologia Molecular e Celular, Universidade do Porto, Rua do Campo Alegre, 823, 4150-180 Porto, Portugal; ICBAS – Instituto de Ciências Biomédicas Abel Salazar, Universidade do Porto, Portugal. Gaucher disease (GD) is associated with upregulation of CD1d and MHC-class II expression by monocytes. While the physiological impact of CD1d upregulation remains […]
[Continue reading...]So many therapies, so little time
7 Aug by
For the past 24 hours, I have had the stomach bug from hell. This morning I was so miserable that I basically forced my husband to stay home to take care of the kids. I was so bad that I couldn’t figure out how I could take care of Hannah during the day. I ended […]
[Continue reading...]Jessica Leoni and her family, a CNN story
5 Aug by
I have known about Jessica and her family since Hannah was first suspected of having Niemann Pick type C back in November of last year. NPC is incredibly similar to neuronopathic Gaucher’s disease with the exception that instead of the lack of a certain enzyme to rid Hannah’s body of fats, NPC is lacking the […]
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