Advances in CF drug therapy

Hello Universe -- I respectfully ask that you give a little power and attention to this; Gods and Goddesses please guide and inspire the scientists and researchers, help these medications to work -- really work -- and get them to the people who need them quickly and at a cost normal working humans can afford.

First drug ever, as far as I know, to treat the underlying salt transport problem that causes CF to be so deadly goes to the FDA with a request for accelerated review and approval this week.  Thank you God for letting it get this far.  It's a start, it's a start, it's a start.

Liam tells me a story

After dinner Liam asked if he could play "lost kitten."  When I had asked him earlier today what he had played at school he told me "lost kitten" so I had been wondering about the game.  "Sure," I said.  Here's how it went.

Liam crawls around on the couch mewing; and speaking "Mommy...looooook....loooook...a little lost kitten, it's a lost kitten."  More mewing and the kitten crawls into my lap so I can pet it and Liam tells me it's story.  

Mommy, this kitten, this kitten, see, its owner has died.  He died.  The owner had a big, big sickness and after a while the sickness got so big that his body totally stopped working and he died.  But while he still had a big, big sickness, but before he died, he let the kitten outside and the kitten got lost.  And when the kitten came back he looked for the owner all around the world and he looked everywhere in the whole universe, and he came home and looked everywhere and everywhere all around the house, and all around the yard, and all around everywhere, again and again, but no owner.  So the kitten sat down and said 'hmmm' and 'think, think, think' and on the last think the kitten said, 'oh, I know, I think my da . . .my owner. . .has died.'  And now, Mommy, this kitten has come to live with you.  What do you think?

Then Liam said "Mommy, I'm really talking about Daddy, you know.  Even though it was a long, long time ago I still remember snuggling with Daddy on his hospital bed, when his hospital bed was right there, next to the tv cabinet, where the blue chair is.  I remember that."

Yes, small one, I remember that too.  Your Daddy loved to snuggle with you and talk with you and read you stories more than anything, and we can always remember exactly what that was like.

Birthday Girls

We are so blessed and lucky to have these two women in our lives.  Happy Birthday Grandma.  Happy Birthday GG.  Thanks for everything you do for us; I hope you both have great years ahead.

Here they are both looking at Liam doing (yet another) inappropriate thing at the table.

 

A note on the cakes: cake #1 is from here.  These recipies are always so perfect; every instruction is easy to understand, all questions answered, and they always work out just right.  Cake #2 is from here.  Also very easy to follow and who can resist something called Southern Strawberry Cake.  The frosting roses were made by a local bakery and frozen on waxed paper for me to take home.  At less than $5 for all these roses I think it may be the last good deal left on the planet.

Pizza Friday, Cashew Cheese, and Birthday Saturday

 

Pizza Friday -- again.  I have to say that compared to when we first (re)instituted pizza Friday we are much better at it.  Practice does improve things.  We generally get the pizza on the table by 6:00 (or earlier), and the kitchen is not destroyed at the end any more.  One thing that helps is I curb the ambition.  Liam prefers just cheese anyway (he also likes prosciutto, but we generally at least make the effort to eat veg when the vegan is in the house for dinner).  Mushrooms and olives work for the rest of us.  Fresh basil if it is around.  Garlic.  Pizza sauce from a jar.  It comes together quickly.  One must make the dough the morning of, or the night before, or buy it (unfrozen) at the store.  No messing around with dough making with the job is to get the pizza to the eaters.

The vegan makes cashew nut "cheese" which is so much better than it sounds, it really, really is. Also completely and totally healthy.  You should try it.

Gather up about 1 cup raw cashews (Raw; not roasted, not salted; this is an excuse to visit the food co-op in your town.), 1 cup water, 1-2 tablespoons food yeast (Another trip to the co-op!), 1/4 cup or a little bit more lemon juice, about 1/3 cup onion chopped fine, and a clove or two of garlic.  Put it all in a blender or a food processor.  Mix it up until it is really smooth.  As you mix, add enough more water so it will sort of pour out, like a thick sauce.  You don't want it too gloppy.  Sometimes basil is added.  That's it.  Spoon or drip it over your pizza and bake away as normal.  Don't use too much -- it's not real cheese for Pete's sake.  Liam's job is always to squeeze the lemons for the lemon juice. Let me know if you try this and what you think.  It also gets used on bean and rice "haystacks" around here.  Very versatile, that cashew nut cheese.

Now that pizza Friday is put away, I am deep in preparations for Birthday Saturday.  All four of Liam's grandparents have birthdays within about 8 weeks of each other.  End of September, mid-October, and then two early/mid-November.  And then we rest.  No, actually, we make Thanksgiving, but whatever.  This year we're combining the grandmothers' birthdays.  This means, because I am crazy, two homemade birthday cakes and three kinds of lasagna.  Yes.  I thought about it carefully and that's what I decided to do.   A progress report: two lasagnas are made and the fillings for the third are made but the sauce is not made and it is not assembled.  One cake is made but it is not frosted and the (Two!) kinds of frosting are not made.  The other cake is not started.  But, I have almost all the ingredients and with a quick trip to the store in the AM, I think I can bust it out.  Photos to follow, I hope.

Foraging

The days fly.  Work.  Work is so busy right now, grinding me down with long hours and travel.  Liam.  He is moving through many transitions -- potty training (Done!), pre-school (I am so blessed and lucky to have him in his little school.), new babysitter (Because preschool schedules are apparently written for the independently wealthy, 9-2 anyone?).

We find our way.  Where do I give today and where do I take.  Where do I go fast and where do I hang on to slow.  Can I turn over the right leaf, see what is barely hidden, almost in plain site.  On the last hot sunny Wednesday morning of the season do I really have to work, or can I sit on the porch with the sun on my face and just talk.  Cook a slow lunch before I go get Liam at school.  Uncovering, if I am lucky, a little more of myself every day. And today, in the deep forest, far up the steep hill, in the mist and rain, mushrooms.

I am trying to look at the face what will be undoubtedly be a rough few months.  The anniversary of the day Will went into the hospital for the last time; came home for the last time; after that.  And then, into the second year; no more days of "the last . . .whatever it is. . .Will was alive."  We make our way ahead -- forward, choosing the best of what is all around us.  So, belated autumn blessings and welcome fall rains that bring returning salmon, early nights, and mushrooms.  I will try to be in this space more often.

Our Saturdays

Saturday is "stay home day" at our house.  Which means no day care, no going to work for me, we get to stay home.  Except sometimes we go out -- today to the Harbor fest to tour the tug boats and eat ice cream for lunch.  Followed by a bus ride up the hill and mac and cheese for our second lunch.  (Mommy! A backwards lunch!)

This is what it looks like. Breakfast on the porch.  Walks into town.  Lunch on the table.  Many loads of laundry. Art supplies and trains everywhere.  Sticks and pine cones from the yard.  Stay home day.

Early bedtime

Liam fell asleep on my lap tonight during downstairs snack/story time, our nightly wind down before wash up, teeth, PJs, upstairs story and bed. 

He had a changeable day.  Started off even; went way south when the babysitter arrived at 8:30 and I went upstairs to work (deep sobbing; had to be pried off me), stuck there for a while.  But by 11:00, after checking in with me for a try at the potty, he was even again, "I love you Mommy --sniff-- see you in an hour."  As good as it ever gets. 

He has been struggling so hard lately; I see the worry, I see the fear, I see him trying and then getting lost.  And when you ask him, after a while, he usually can tell you: I'm afraid mommy will never come back; I'm afraid mommy will die; I'm afraid I will die. 

He is trying so mightily to be toilet trained so he can go to preschool; but, is so concerned about the change.  In the very quiet voice "Mommy--it is a new school, I might cry; What if I cry?" Leaving aside that he still cries every single day when I leave him at the "school" where he's been going for over two years.  Regressing.  Calling me mama again for the first time in over a year. 

He will come out of it, of course.  He is learning various tricks to use when his mind and body start to run away from him; just little things he can say in his head to push pause, help him regroup.  And he is getting good at it; buying in.  ("Mommy--I was mistaken, I thought I was too sad to use my trick today, but then I tried and it worked; Mommy? it worked.")  He is so exhausted.

I am that person.  The one he cries, not to leave.  The one he clings to.  The one who, when I sit still enough, lets him know it is safe to fall asleep.