I mentioned recently that Carmen has been having some trouble keeping her body temperature stable. On Wednesday, her temperature dropped to 92 degrees. When she gets cold, we now dress her in fleece pajamas, mittens, fuzzy socks and fleece hats. She is wrapped in blankets with a heating pad on top. We have to carefully monitor her temperature throughout the day to make sure we are not overheating her with the layers.
From what I understand, kids with Tay Sachs eventually have trouble regulating body temperature because the part of the brain that controls temperature is all clogged up with gangliosides. Just another symptom of a progressive degenerative neurological disease.
Now that we have a photo editing program on the laptop, I can start posting pictures again. 
Here is Carmen, all bundled up.
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Thanks to Edi for dinner and Jennifer for Boston Market! Lauren was thrilled to have macaroni and cheese! Thanks to Azeb for bringing us Subway lunch. I thoroughly enjoyed visiting with you and eating the turkey sandwich!
What a peaceful bundle! Shalom……
Shalom indeed! John B.
Carmen is so beautiful!
I think that the inability to regulate body temperature is a hard blow — I do so remember.
Carmen is peaceful and beautiful. You have given her that gift. In the ensuing months you will have to let your miracle go back to Jesus. I’ve only done it as a daughter with a dying mother — not vice versus.
My prayers and thoughts are with all of you. However, may I tell you that years later I still believe that God is the strongest and best hope that any of us have.
Hi there, I am glad you and Hope are still on the couch and you can take pictures. I agree with Betty Carmen looks so peaceful. God bless you all. In Christ, Joe
Carmen is so blessed and so beautiful!!! Keeping ALL of you in my prayers!!!