House cleaning is like stringing beads with no knot at the end of the thread.

"Usually the Lord gives us the overall objectives to be accomplished and some guidelines to follow, but he expects us to work out most of the details and methods." -Ezra Taft Benson-







Saturday, March 16, 2019

March is Trisomy Awareness Month!

Now that we are halfway through the month.. I am going to talk about Trisomy. This is near and dear to me, and whenever I see a Trisomy person I just want to hug them, They are so beautiful!
Don't be afraid to ask me about Trisomy or Saralyn. We love to help educate, we love to talk about Saralyn. Please read the whole post.

What is Trisomy?  Well, this refers to cells having three copies of a chromosome. When three copies of any one of the chromosomes are present, rather than the normal two, the outcome is 47 chromosomes in the cell, instead of the usual 46.


What is the most known Trisomy?  Downs Syndrome or Trisomy 21 is the most known. . Next is Trisomy 18 or Edwards Syndrome, then Trisomy 13 or Patau's Syndrome.

How many Trisomies are there? There are 23 different Trisomies, one for each chromosome.
In Saralyn's case, she had three 18th chromosomes.

Is Trisomy fatal?  Actually, LIFE IS FATAL, I mean we don't get out alive right? Everyone dies, we just don't know how long we get to stay on earth before that happens. Some people get 100 years, others get 100 minutes.. Every body is different. Even "normal" babies can die at birth.

What is the difference between Full, Partial and Mosaic?  Full trisomy refers to three copies of a chromosome being present in all cells and is the most common form of trisomy 18 or 13. Mosaic trisomy and Partial trisomy occur far less often, with variable and generally better outcomes but some individuals are as affected as those with a full trisomy.  Mosaic trisomy refers to two cell lines in a person; a portion with trisomy (3 copies of a chromosome), the other with 2 copies.  Partial trisomy occurs when only a piece of a chromosome is extra in a person’s body cells. (direct from trisomy.org)

I just wanted to share in case anyone was wondering, or now has this path to go down. This is not a bad path, it is just different. We wouldn't change having our sweet Saralyn.

If you have questions, ask them, please. IF you have been told your child might or is a trisomy baby, we have an amazing support network at trisomy.org
Look for SOFT on facebook, or just go to their website at trisomy.org for more information. There is so much medical information on trisomy.org. Yes this can be scary on your own, but with us you are NOT alone.. Remember, educate and advocate for your baby and or child.



Thursday, February 14, 2019

A somber day

Two years ago today, our little girl passed away. Two years ago today, my heart was ripped to pieces.
Three years ago today, our little girl was doing well, had just had her meds fixed, and was home from the hospital.

Our sweet Saralyn was the light. She was so amazing. Born with Trisomy 18, there was no decision to be made. We made the decision when we decided to be together.. Never ever was murder (termination or abortion) ever something we would consider.


When we were pregnant with our oldest, we were told that the baby could be down syndrome, and we should abort. NOPE.  He was not.
Two years later, pregnant again, and we were told this baby was down syndrome, we should abort. NOPE. He was not.
Didn't let them do the test on any other pregnancy.. Until, number 9. They wouldn't let us leave the ultrasound clinic until we submitted to do a NIPT blood test. Why? Because they saw some cysts on her brain.. which by the way, were gone when I was 34 weeks pregnant. They also saw something with her heart, but wouldn't be specific.
MY midwife refused to support us during this time, and we searched and searched for an OB. We decided that if this baby needed support when she was born, that we would need to birth in a hospital with a very skilled NICU. We chose, Swedish Cherry Hill in Seattle.

We met our new OB/GYN, we met with the head of the NICU. WE flat out told them, we are giving this baby EVERY chance possible for life.
 We also went to a cardiac specialist for a special heart scan during my pregnancy. They found our baby girl had VSDs, ventricular septal defects, aka holes in her heart.
After several scans, which she hated, you could see her running from the scanner on my belly. We prayed and hoped for the best, and prepared for the worst.

When she was born, via c-section, due to being breech and having the cord wrapped around her neck so she couldn't turn, no one in the room could believe she was Trisomy 18, aka Edward's Syndrome, because she didn't look it. She had a LOUD cry (T18 babies usually have a silent or very quiet cry), she breathed on her own, her head was round (usually T18 baby's have specific shape to their head).


I only got to see her for 1 minute before she and Daddy were whisked off to the NICU.
Saralyn after 24 hours, ended up needing a feeding tube (NG-tube) and she was doing well. Although very small. Yes she had 2 small holes in her heart, but she was doing well. We spent 9 nights and 10 days in the NICU, then we came home, on oxygen and a feeding tube. At first we were told she couldn't go home until she was off the feeding tube.. I informed the NICU doctor that millions of people are on feeding tubes AT HOME. and oxygen.

We had several hospital stays, the first one discovered she needed to be on Lasix because of the hypertension caused by her VSDs, but she was being weaned off when she passed because her VSDs closed on their own. She only had oxygen as support as needed. When she was 6 months old, she was given a G-tube, so yes, she had a tube going directly in to her stomach to help her eat. She loathed bananas, but loved ice cream and Cheetos. Her eyes would dilate when you gave her a taste of ice cream, she loved vanilla.

 Saralyn defied the odds:
1. she lived, they said she would die soon after birth if she even survived the pregnancy
2. she had 100% vision, they said she would be blind
3. she had 100% hearing, they said she would be hearing impaired or deaf
4. she moved, this little girl would scoot off her play mat to smack her feet on the hard wood floor. She also learned to roll from back to tummy and was learning to go from tummy to back.
5. She spoke. They said she would never communicate, she would be a vegetable. This was so far from the truth! Saralyn said, "mama", "dee" (daddy), "eeeet" (eat), "na" (no), "uh huh" (yes) and she also said "HEYYYY" at 4 months !!! Because we would say, "Hey beautiful, how are you doing?" when ever we saw her watching us.  She would say Hey, whenever she saw someone come into the room, or walk past her bassinet. The first time she rolled from back to tummy she said, "I did it" !!  Yes, it was clear as day! She also would arch her back when she wanted to be picked up.
6. She recognized family. They said she would have no comprehension of what was going on. She would give family members she hadn't seen for a couple hours the biggest grins!


Saralyn went into the hospital a couple of time due to illness, RSV and or pneumonia.  BUT, she usually got better. I think what sent her into sepsis our last trip, was that they gave her a broad spectrum antibiotic shot.. What they should have given her was high doses of Vitamin C through her IV. I will forever regret letting them give that to her.   The other down fall was medical discrimination. NOT in the ER, but in the room after we were admitted. The doctor came in and yelled at me saying she wouldn't  be sick if we had immunized.. this was the same hospital where she was born. The same hospital that refused to give her immunizations, saying she couldn't have them, because she was just going to die anyways.
I may have done the RSV shot had they let us. But she was too young for anything else. But what is crazy, the same shot and dose of immunization is given to a 200 pound man, as is given to a 5 pound neonate baby, aka newborn.. how is this safe?

But, Saralyn didn't die because of immunizations. She died because that same doctor that yelled at me about shots, also didn't ever examine her. The entire time she was in his care, he ignored her. It was the nurses that helped with everything. And when the shift changed and we got a new doctor, he was all over her care, trying to help her.. but by this time, that darned antibiotic had done it's damage.. I only wish that hospital knew of the benefits of high dose Vitamin C via I.V.   That could have saved her.

But instead, today marks 2 years since my sweet baby girl gained her angel wings. And my arms are empty, my heart is broken, and my life will never feel right again. It marks 2 years of wearing a mask, trying to live with out my sweet girl.
I pray every day that she and the Lord will forgive me, I feel I failed both of them.
I am so thankful for the time we had, but really wish it had been longer.



Thursday, January 3, 2019

Scrappy Quilt is Done!

It took me all of 2018. But I finally got the quilt done. I love how well the binding turned out, great mitered corners.
Now remember, this is a scrappy quilt. Here is a little look of the backing with the top folded over to show you the mitered corner.
And here is picture of the finished top.
 And here is the back.
 So I did a scrappy section on the back, with some extra pieces.


I love how this quilt turned out. It is a memory quilt as well. As you saw in my post when I showed the individual blocks. I am so happy with how well the binding went on too. Washed and ready.

Saturday, December 15, 2018

Chicken Stock

It was so nice the other day, after putting in a bunch of hours, and my sick kid feeling better, to have a nice sit down dinner with the family. We roasted a chicken, made some mash and gravy. It was delicious. After dinner, we took all the bones, put them in the crock pot and made bone broth.

For this wonderful bone broth it contained bones from one chicken, plus any dripping in the pan, any skin not eaten, bay leaf, some chopped carrot, chopped onion, chopped celery and some garlic. Along with a tablespoon of salt and then covered it all with water. Cooked this on low for 48 hours because I accidentally forgot about it. This happens when you have a kiddo that had a nasty virus, and the night we had our chicken dinner was the first day she was feeling better, and I took a few days to recuperate from lack of sleep.

Sometime during the last 2 weeks, my teenager decided he wanted to learn to make bread. He did great! The first time he made garlic mash bread. The second time just potato bread. Both times, all the rolls and loaves of bread came out beautifully!

And yes, these are made from a gluten dough. Yes these were FABULOUS!!! The smells were divine! So each time he made bread, it was a 6 loaf recipe, so about 9 pounds of dough. Great Grandpa and I are so proud of him. Great Grandpa was a master baker, and I am so thankful he taught me his skills before passing. Although we didn't use Great Grandpa's recipe (100 pounds of flour, 20 pounds of this.... 10 pounds of that.. I don't have that big of a mixer ).  For my little mixer, this was great. Some day  I might have the mixer of my dreams, a 60-quart Hobart, but for now my little Bosch will have to do.



Saturday, November 24, 2018

Crock Pot or Instant Pot Challenge WEEK #4 !!!!!!!!

Thanksgiving was the first day of this week. Can you believe it? Wow, almost done with this challenge. We used the instant pot for potatoes on Thanksgiving. And the ham was in the crock pot.
The Ham: This was a carvemaster ham from costco, and I just sliced it thin, and put the whole thing into the crock pot, with the juices in the package. Set it on low early in the morning so it was ready at 2pm. Because of little kids, I put it in a dish for serving so they could reach.

 The Spuds..  were fabulous! All we did was peel some russett potatoes, cut them into chunks and put them in the instant pot with 2 cups of water. Then we set it to steam for 8 minutes. Yes, some stuck to the bottom, but they were cooked and we mashed them, then my kiddo added half and half, garlic and parmesan.. The flavor was great!
This was my 8-qt instant pot. We only cooked up 15 potatoes. Creamy deliciousness

Drew's World Famous Garlic Mash
3 1/2 pounds of russet or Idaho Gold's potatoes, peeled and chunked evenly
Sauce: 2 TBS kosher salt
2 cups half and half
8 - 10 cloves of minced garlic
6 ounces of fresh grated parmesan cheese

Boil spuds in salted water until soft. While those cook, gently bring salt, half and half, garlic to low simmer. When spuds are done cooking and soft. DRAIN. Mash, then add sauce. Stir well. Then stir in parmesan cheese.
Serve with or with out gravy. Serve with a great side like filet mignon, lobster tail, or meat. Best with friends and family.

November 25.. I made a butternut squash soup in my crock pot. I didn't really follow a recipe. I roasted diced butternut squash, and one russett potato, an onion, and some garlic. AFter I roasted it in the oven for some more flavor, I put all that into the crock pot with chicken bone broth, bay leaf, salt and pepper. Set on low for about 6 hours. Then just before serving, I pulled out the bayleaf and used my stick blender to make it smooth. This soup was yummy and comforting. We had this with Thanksgiving leftovers.. I put the turkey in a glass casserole, poured the gravy over than, then the potatoes on top of that. I also rewarmed the leftover ham.   Nothing left, and everyone was full.

November 29th, I made up more hard eggs. Yes, I think I do this atleast weekly. We eat a lot of eggs, they are a complete protein and good for you. Again, did these in the instant pot. That was the end of Week 4.

I hope everyone was able to use their crock pots and instant pots this month. We use them often, but I think once life slows down a little, we will change our menu.. I am getting bored. It's hard when you are gluten free, soy free, corn free, and sugar free. I try but don't always succeed. 


Sunday, November 18, 2018

CROCK Pot Or INSTANT Pot Challenge Week #3

Well, hello.. um, I've been using my instant pot this week and .. um.. forgot to post !!  WOOPS!
November 16th I went grocery shopping, and I was able to get more eggs, hurrah, as we are out. 
BUT when I got home I immediately put 18 into my 6qt instant pot in a collander, added 1 cup cold water, and place the lid and steamed them for 3 minutes, then natural release for 10 minutes. Then plunged them into  ice water to stop the cooking, and ate the one that cracked. WHILE the instant pot was working I was able to separate out 6 pounds of ground turkey for future meals.

November 18  Well today we are doing a baked potato bar. BUT I need my oven for the bacon. So I will be using my instant pot to "bake" some russet potatoes. This is so easy, and they taste good.. and the skin stays soft so it is edible.
 Put your open flying saucer into the bottom of inner liner. Add 1 cup of cold water. Place spuds onto the flying saucer. Close lid and steam for 12 to 15 minutes. Let natural release for 10 minutes, sometimes more. Then open and serve.
They were delicious with optional toppings of chili, cheese, chicken, bacon, and ranch. Served with a side salad. DELICIOUS.
Well, in order to have fridge space for Thanksgiving, I think we will be eating leftovers for a few days. But I will be making potatoes in the instant pot for Thanksgiving, rolls, and a ham. We do it potluck style here so the kids each make something to add, and we are having family coming from out of town, and they will be adding to it too.

November  21, Deviled eggs.. One of my favorite things for Thanksgiving sides! Of course I cooked all 39 eggs in my 8-qt Instant Pot Lux. I really do love my instant pots! This is the last day of week 3. What did I do? I steamed up 39 eggs for the deviled eggs.
Mary's Deviled Eggs
24 hard boiled eggs, completely cold
1 tsp salt
2 tsp dry mustard
1 tsp ground black pepper
sweet or dill relish or pickle juice, cold
12 TBS (3/4 cup) mayo, cold
paprika

Cut eggs in half lenghtwise, and place yolks into bowl, and whites on plates. Mash up yolks, then add other ingredients. Pickle amounts and type depend on your taste. Whip until smooth or blended. Put into whites of eggs; sprinkle or garnish with paprika. Cover and refrigerate until ready to serve.
Makes 48 halves




Thursday, November 8, 2018

Crock Pot or Instant Pot Challenge WEEK #2

Today marks the first day of week 2, November 8 to 14th. I am so excited, making my first butternut squash soup with a butternut from my garden! It smells great, dinner in in about an hour. I am going to throw some rolls in the oven to have with it, because soups need something dipped in them. I got this recipe from Taste of Home. I got the recipe out of a TOH book, and didn't know the reviews, but it smells good, and the little guy might like a cinnamon soup. Here is a sad picture of it cooking.
 So here is the Butternut Squash Bisque.
So I pureed the soup. That's what you do with bisque. BUT let me tell you my changes first. I followed the recipe, but honestly, the cooking in OJ in oven is a waste. LEAVE out the OJ and brown sugar. The apples add plenty of sweetness. I also added 2 tablespoons of short grain rice to the crock pot after I took the picture above, to thicken it a little, and give it a better mouth feel. I also added half a pint of home canned cannellini beans that I drained and rinsed to add some protein to the soup.
 THIS SOUP WAS WAY TOO SWEET!!!  Trust me, leave out the OJ and brown sugar. Don't bother roasting the squash in the oven first. DO NOT use 1/2 cup butter, it was too much. I doubled this and still only used 1/2 cup butter for the onions and it was too much.
The rice helped with the mouth feel, and the beans kind of toned down the sweetness. I might make this again, with changes. BUT I don't know. The cousin thought it was a warm dessert soup.

November 11th: Veterans Day..While in the morning I somberly remembered my Grandfathers, and their brothers who have served. I also remember our Angel girl.. who fought a different war, a war against Medical Discrimination and Gene Discrimination. Although I think of her daily, I was a wreck most of the morning.
Today we used our instant pot to "bake" potatoes. Then the piper mashed them and made "his special recipe" for garlic mash. They were delicious!

November 12th: BONE BROTH.. I make bone broth almost weekly, this time I accidently made it with too much water. I am used to having bones from 2 chickens in the pot, not one.. So I messed up. Owell, I just won't have to dilute it before using it. I got 4 quarts total, normally I get 4 quarts from 2 birds.
For dinner tonight I pulled some chili from the freezer that I made in the instant pot last month. Threw that and some shredded cheddar in some tortillas and fried them up in butter, DELICIOUS.

November 14th: LAST day of week #2, and wow Guess what I did??? I messed up!!  I forgot to read both sides of my recipe card.. So I tripled my recipe for Chili but... ok, so I tripled the meat, but I have to multiply everything else by 6 !! WOOPS  So ya..

I love this chili recipe. It is so yummy. I got this recipe from my sister, and I doctored it up a little. Hands down our families favorite chili, and we eat a lot of chilis.
Can you smell this? OMGoodness my mouth is watering.. I almost said my watering mouth.. either way.. let me wipe the drool off my chin. We usually top this yumminess with some shredded cheddar. The little one likes a little sour cream too as he doesn't like spice (except buffalo wings).
BEST CHILI EVER 
2 tablespoons bacon grease or oil
1/2 cup water
1 pound ground meat (beef, chicken, turkey or pork, whatever you like)
1 cup chopped onion (I use 1 whole small or medium)
2 poblano peppers, roasted, peeled and seeded
1 1/2 teaspoons salt
2 teaspoons cumin
4 teaspoons chili powder
1/2 teaspoon oregano
4 to 6 cloves garlic, minced (the more the merrier for us!)
2 - 15 ounce cans tomato sauce (or 1 - 29 ounce can)
2 - 16 ounce cans beans (pinto, cannellini, black, garbanzo, whatever you like)
2 cups bone broth, stock or water

Heat oil and water in a stockpot a minute. Gently cook meat with onion until no longer pink, and water has mostly boiled off. While meat is cooking, add prepared poblano and broth to blender, and blend to almost smooth. If you don't have a garlic press, then add to blender.  Add spices to meat and let warm for 2 minutes, then add the rest of ingredients. Bring to a boil, lower heat, partially cover pan and simmer 45 minutes. Makes about 3 to 4 quarts
CROCK POT: Follow directions above until you have warmed spices. While meat is cooking, place beans, tomato sauce, 2 prepared poblanos and broth mix, garlic, oregano if you didn't put in with meat. When meat is done, add to crock pot, give a stir. Cook on HIGH 3 to 4 hours, Low 4 to 6 hours. 

We also use this chili for making quesadillas: tortillas, chili and cheese.
We put chili on half the tortilla, top with cheese, fold empty side over the cheese and fry in butter on each side until golden brown.. My FAVORITE meal growing up.

It's dinner time!!!!!