Two days ago, May 1st, a little girl named Rachel went to Heaven. Rachel had Tay Sachs and just celebrated her 5th birthday a few months ago. We met Rachel at the 2008 Tay Sachs conference. We especially enjoyed meeting Rachel’s parents that year and hope to see them again. Please pray for Rachel’s family as they mourn the loss of their daughter.
Here is a picture of Carmen, Lauren and Rachel. Rachel was getting a lot of sun that day!
Thanks to Karen for taking Lauren to soccer this week, Joey for taking Lauren to the park, Monica for watching Carmen and playing with Lauren and Jacy for the play date for Lauren. Lauren had a great time!
We have our second Make-a-Wish meeting tonight, in about an hour. We are excited!
Carmen update: Carmen is doing OK. She is breathing well and doesn’t have much congestion. We increased her seizure medication, Phenobarbital, to 11ml (44mg) twice per day and that has helped decrease the seizure activity. She continues to swell and have diarrhea.
I have asked the doctors several times if Carmen could have ulcerative colitis. The doctors keep saying no, C-diff is causing the diarrhea. Now that the doctors don’t think C-diff is causing the diarrhea, I am going to ask again about ulcerative colitis.
A friend of mine, who incidentally does have ulcerative colitis, was over yesterday and commented that Carmen has the same fingernail discoloration that she has. I’ve never noticed Carmen’s nails looking different but sure enough, they do have a brown arc where the nail separates from the bed. Anyone know what might cause this? My friend’s doctors haven’t given her an answer as to why her nails have just started doing this either.
Here’s a picture of my friend’s and Carmen’s nails.
