Skip to main content

Mom update

It's early, early in the morning and I just talked to mom. She sounded GREAT!!!!! Ryan had talked to her yesterday before I had, and reported the same thing. Mom says the eye looks much better now that it's stitched up. It's not bleeding and draining anymore, although it's still swollen. Her vision is improving and is expected to keep getting better as the swelling goes down. There is a chance that they'll have to go back after everything is healed for a little more plastic surgery, but otherwise, everything is going very well. Thank you so much for all your prayers. I'm so grateful to her team of doctors. If they hadn't caught that blood clot, I wonder what would have happened to her vision, or if the clot had gotten loose so close to her brain - it makes me shutter!

Mom says she's been very happy with the care she's had in this hospital. She says they've watched her so carefully and called in any specialist she needed without hesitation. She says even the food has been pretty good. Grin!

I spoke with mom's nurse, who spoke flawless English. Mom says communicating with the medical staff has been no problem. Her doctor actually went to medical school in Seattle and is married to an American woman, so his English is perfect.

I can empathise with our HPS friends that don't speak English and what that's like in a medical setting. There were a few times over the years living in Germany when we had to seek medical care in the German hospital. Usually someone spoke good English, but still, it can be unnerving not to understand what's going on around you when you're ill.

As for me, my sleep patterns are now completely backwards. I've been staying up so I can talk to mom in the morning her time, but late enough in the morning the doctor has been by. I think mom's in the clear enough that I can start working on trying to get things switched back around.

Thanks again to everyone for their prayers and well wishes!

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

The blog is back, I hope

  What started as a way to share news about HPS and what it is like to live with Hermansky-Pudlak Syndrome has fallen apart badly! There are a lot of reasons for this. Some are related to health. Some are related to time. And some are related to mental health. Finally, the last obstacle was technical. I lost access to my blog. Every time I started to work on regaining access, something interrupted the process and I’d have to start all over again. Before you say it, I know. A blog is so old school. Haven’t you heard of a vlog Heather? Or maybe TikTok? I know my limits. I have a great face for radio. I’m not particularly eager to film myself. When I do, I feel I need to spend extra time putting on makeup or fixing my hair. Yet, often when I have the time to do something like this, it is early in the morning or late at night. I don’t want to “get ready.” I’m having a hard enough time squeezing this in without staging myself. Grin. I’m trying to start with small goals. Right now, I’m h