April 23rd 2003
Visiting Nurses are wonderful. They come every weekday. They do blood pressure checks, temperature, pulse, and some of the physical or speech therapy too. One lady came and tried to do the DPNS. I had the swabs and she used them. She wasn’t trained in the technique. So I don’t think there was any help for my swallow, but I didn’t let on that I knew. She did her best. She was here. She smiled at me. And that did help.
The nurses check the schedule I make for the day : 6am- feeding, 830am- crush and add Levothyroxine to the fluids in pump, 1130am- change formula, 230pm- formula, 530pm add Coumadin (12.5mg which I used the pill cutter to make from my bottle of 5 mg light orange pills and the 1 mg. pink pills. Today that is 2 and one half of the light orange pills. Or two light orange and 2 and a half pink pills. The adding of the fractions is something I am very good at. I take my time and figure it twice. But it is good to have the nurses check. ) crushed into fluid, and 900pm crush the Paxil and Colase and add to tube. The Coumadin thins the blood and the last INR said what the next dose is. The Paxil is supposed to help me stay calm and sleep and not worry. (Best of British Luck on the Magic Medicine.) And the Colase helps my innards do their job AKA The Poop Pill. I fill out a daily schedule and keep it near me at all times. The nurses check it for me.
They help me with the Kangaroo Pet 2100 Enteral Feeding Pump. (Yup, my robotic feeding gadget is sweetly referred to as a kangaroo. How familiar.)
The pump goes into the frame. The container, filled with formula (aka my food) goes onto frame. Prime the line. Press tubing into channel, being aware of roller clamp. Install pump. Close loading arm. (Then I can thread the pump through carrying case and put entire unit into case, if I am going to leave the bedroom and maybe go outside while feeding. I am not.) The final step is to connect the pump to my feeding tube. It’s kind of like the space shuttle docking at the space station. The speed of the pump for the formula is still slow and needs me to be hooked up pretty much round the clock. I am getting the procedure pretty much down, but I love the nurses helping. With their hands working on the pump, they chat about the system in a friendly way. There is no shame or pity in their work with me. They talk to me too, and touch me to for all the various tests, evaluations, etc. When the Visiting Nurses are here, I am working with them in the moment to make my day and me better. I connect with them and my machines for a few moments of safe healing.
I get up and move around for those 6 scheduled times a day. I get up to take care of Lola, Ciro and Zoebug. Lola goes out into the yard for each of my 6 times. That is 6 sets of stairs/day. I don’t even think about it now. It is the routine. Down 6 steps, a landing turn, down 7 steps, back porch, down three to the yard, and the reverse on way back up. I don’t put the leash on Lola as the yard is fenced. I disconnect from Kangaroo and leave the suction upstairs. I have a ball of tissues in one hand and a “cookie” for Lola in the other. The cookie secures her speedy return to me after her business is complete. But after each time outside with Lola, I need the couple hours of rest. I zone out with the TV mostly, cuddle with my babies and wait for the next appointment on my schedule of food, fluid or nurse. That was yesterday. This is today. And now that the schedule for tomorrow is written and Lola has had her last cookie, to bed for the night we go. All in the Family is on tonight, 4 episodes and later, there are a couple hours of Curling on.
April 23rd 2016
The end of April vacation is always ludicrously busy, even if there is not tons to do. I have had a taste of rest and relaxing, but know that the final 6 weeks of school is there, jammed packed of testing, activities, projects, and graduation. So my head is running a mile a minute. I have a hard time staying in the moment, being present when the rabid bats are up in my bat cave AKA chaotic thoughts in my head.
I get up school early, even though it is vacation. Ciro is needing some food and Rondo needs the loving. Gus snores. 3 mugs of water, “down the hatch,” as Gramma Harriet said. The coffee is perking away. All is right with the world. Before the coffee is ready, I go to my new, well practiced, default setting. When I feel like this, I bake, even more than usual. “Keep calm and bake on,” says one of my rubber spatulas.
Gramma Harriet, AKA my Cape Cod Gramma, used to bake for everyone in her life, at holidays and just everydays. At Christmas, the firefighters over the back fence got a coffeecake, the dentist, doctors, and nurses got cookies, the neighbors got brownies, and the gals at the bank got Lemon Poppyseed Cake. That is what I will bake now. 
We get to see some friends after Jason’s first baseball game of the season today. The cake is just the ticket for our friends. (When I get home I need to wrap up fixung two blueberry pies too.)
Lemon Poppy Cake is in the oven, bright yellow zest making the sun shine on this rainy morning. I get the first cup of coffee to myself, and then the baking sounds and smells bring “the mens.” Breakfast is more of the Breakfast Burritos. I made 6 yesterday, because we had tortillas going to waste, filled with scrambled eggs, bacon, cheese and leftover potato-cauliflower mash. Three were eaten yesterday morning and 3 are today popped from freezer to microwave. That’s what the recipe said, a couple minutes in the nucolator to thaw and warm them from frozen. It took a couple, few minutes, but it worked. They were yum.
After breakfast, there is a few minutes to write and then off to the ball game, up the hill near the airport we go. The sun is supposed to win out, but hasn’t yet. I am grateful for the bright yellow team shirts and hats that Coach gives out. They positively glow. Jason picks number 22 this year. 
His first time running the bases, Coach calls him out for great running. He hits well each time at bat. He gets to catch, equipment and all, catching and returning the missed balls to the Coach/pitcher. As catcher and as first baseman, he catches and tags out players. In the dugout, he cheers on his teammates. Impressive outing! Momma is proud, and cold, and hungry when the game ends. We head home, maybe we should go out to lunch? Not so fast Proud Momma. For whatever reason, or for no reason other than he is 7, Jason has an equally impressive meltdown in the car.
So I pull up my big girl panties, remain calm(ish) and make lunch at home. The ball player showers and hydrates. And once the 6 hot dogs have been divided between 4 eaters, things look a bit better. (Gus is one of the 4. When we first adopted him, hot dogs were the only human food he ate. Imagine? How we have corrupted, I mean spoiled, him. So Gus, of course had a hot dog too.) The ball player heads back to his room after lunch to do the time for the crime. I head back to Bake on! And Tim works on a customer’s order.
Apple pies are a Henry Sugarhouse favorite, blue ribbon winner, tried and true. But the request today is for blueberry pie, so that is in the oven. A friend of Tim’s helped us out at the last minute, big time. Of course I offer a “thank you baked goodie.” Yesterday I made a double batch of Sugarhouse Pie Crust and put it in the fridge to chill. 
After lunch the pies went together. And of course if you make one pie to give away, you must have one to sample here.
With 5 minutes left on the timer for our pie, you can see a well floured sweatshirt on me while I write, sitting with Ciro who purrs beside me.
Here is what I did for the Pie:
- Crust: Put 1 2/3 cups King Arthur Flour, 1 TBSP sugar, ½ tsp. salt and ¼ tsp. cinnamon the bowl of the mixer and combine. Add 1 stick of unsalted butter, cold and cut into cubes. Add 2 Tbsp. Crisco. Combine well on low speed until butter is well mixed in. Slowly add ¼ cup ice cold water until the dough STARTS to ball. Stop and make into a ball and put it in the fridge. (I doubled this to make dough for two pies)
- Filling: Mix ½ cup King Arthur flour with ½ tsp. cinnamon in a large bowl. Add 4-5 cups of frozen blueberries and toss. Add ¾ cup sugar to berries and toss.
- Divide pie crust ball in half. Roll out one half to line a 9 inch pie pan. Put blueberries into the crust in pan. Add the juice of ½ of a lemon over berries. Dot with 1 tablespoon of butter. Roll out the other half of the dough and put on top of the berries. Seal the pie shut. Give the pie openings to vent. (Don’t we all need openings to vent now and again?)
- Bake in a 425 degree oven for 35- 45 minutes.
The timer dings. Now We have to have a chat about what happened with our young lad and then head out with the Lemon Poppy Cake and my crochet, to see our friends. Thank God we have pie to go with our chat. A spoonful of sugar sure helps the medicine go down.
