Remembering Kawasaki's Disease

One year ago today we were sitting in the E.R. at Scottish Rite (for the second of four times in two days) with a VERY sick baby girl. Eliana was a tiny 14 month old and wasn't even walking yet. She had begun to run a fever just before Thanksgiving and, even though we were alternating Tylenol and Motrin like our doctor taught us to, it just wouldn't break. She was sleeping a lot and when she was awake she was lethargic and just wanted to lie in my lap. Scotty took her to the doctor the day after Thanksgiving and he diagnosed her with an ear infection. I was doubtful because she had never had one before and was not touching her ears. She didn't seem to be in pain. Two days after Thanksgiving we were at my mom's house having dinner with the whole family and Eliana slept right through the meal. When I finally got her up mom and I noticed a rash on her belly and legs. It wasn't that bad and she has always had a bit of eczema, so it wasn't really cause for concern. We couldn't get her to eat anything and she hadn't really eaten much for the past four days. That was cause for concern. Luckily I was nursing her two to three times per day so I still had milk and that is the only nutrition we could get her to take because of the comfort it brings. So I went and nursed her. Shortly after she began to vomit. So we headed home and called the doctor. He advised us to take her to the hospital.

Scotty loaded her up and off they went on the almost hour drive to Scottish Rite. They were there all night and got home around 5 am. The ER doctor called just as Scotty was walking in the front door and said the nurse was NOT supposed to send them home. He said Eliana was dehydrated and needed IV fluids and to bring her back. We dropped off the older children with my sister and headed back to the hospital. They took a urine sample and diagnosed her with a urinary tract infection, but said her ears were fine- NO ear infection at all! I knew it! But again, I was skeptical because she has never had a UTI before. So they put an IV in and begun to give her fluids. The doctor said she would "pep up" within and hour and be ready to go home. I wanted my baby to pep up so badly. She had been pitiful for days by now and I was ready to see her smile again. Well, one, two, three hours went by and no pepping. So finally they gave us a prescription and sent us home with a NOT pepped up baby (despite my objections) She was lying there on the stretcher not moving and looking just awful and the doc walked in and said, "Wow! She's looking MUCH better already!" I looked at him like he was crazy because I was just thinking the opposite! I told him she was looking even worse to me. But he sent us home anyway.

By the next morning a new symptom had begun. Now Eliana's lips were cracked and bleeding. I called our pediatrician and the phone nurse was a life-saver. She had worked at the children's hospital for years and as soon as she heard of all the symptoms she said that my baby probably has Kawasaki's Disease and we need to get her back to the hospital right away. She went to check with the doctor and then they sent us back. We had to rush out. I had never heard of this disease and it was SO scary to hear that your baby has a disease! We called family and everyone started googling it like crazy.

When we got back to the ER they took us back right away- no waiting this time. Eliana had lost two pounds by now. Her heart rate was very high and her fever was still raging. The doctor came in to see us (a different doctor) and explained to us that she did NOT have a UTI, but that one of the symptoms of KD is white blood cells in the urine which usually means UTI, but that no culture had grown in the urine sample. So there was no infection there. He explained that Kawasaki's Disease is difficult to diagnose because the symptoms are similar to other common illnesses in children, but when all the symptoms are present they can finally diagnose and treat it. This can take several days. The symptoms include a high fever that does not respond to medication, rash, white coating on the tongue (she had this too which had me baffled), cracked and bleeding lips, white blood cells in the urine, and listlessness. She had them all. They explained that the treatment is called Intravenous gamma globulin or IVIG. It is purified blood antibodies administered through iv. Because of the KD Eliana's blood vessels were swollen and inflamed, so it took over TWENTY needle sticks before they finally got an iv in. Scottish Rite brought in their iv team. They used an ultra-sound machine to find a vein. They were about to shave a patch on her head and put the iv there when they tried one last time and finally got one in her arm. That was terrible to watch. She was in so much pain and could barely open her eyes, but she was crying pitifully as they stuck her over and over in her little arms, hands, and feet. In the end I was crying too. So finally they took us up to a room and checked us in. I was anxious for the treatment to begin because she was getting worse by the hour. They told us that all of her joints were inflamed and swollen which is why she was lying perfectly still. It was painful to move her, so we didn't want to hold her because it caused her pain.

The treatment began around 1 am and the doctor told us she would improve through the night. They administer it for 12 hours. We watched her for awhile and she began to look worse and worse. Her face and eyes were swelling so much that she was unrecognizable. I expressed my concern to the nurse who found the doctor (this was at 3 a.m.) who came in to talk with us. I was in tears. By now we had had so many misdiagnoses that I was beginning to doubt this one too. Why was she still looking worse even after two hours of treatment? But this doctor was very kind and she explained that she had seen this happen before. She assured us that Eliana was going to improve. We reluctantly tried to believe her.

It took two days for Eliana to begin to improve. Because I still had milk I was able to feed her. It was the only nutrition she was willing to accept and this seemed to be a huge relief to all our nurses and doctors. She wanted to nurse every two hours or so like a newborn, but I was glad because I got to hold her. It was painful for her to be picked up and moved, plus she was hooked up to so many cords and tubes, but we managed to nurse somehow- every two hours or so.

Scotty and I slept on a tiny couch/bed that was designed for one person and ate hospital food and stood by that metal hospital crib for five days. We watched our baby get worse and worse and then better and better together. We tried to comfort her the best we could. Scotty comforted me when it got so hard that the tears over flowed. One of those times was when they had to do an ultra sound of her heart. The lady rolled her machine in and flipped the baby onto her back. Eliana was in pain and afraid and tried to cry the whole time. It was taking so long and it was just so hard to see her very upset and in pain. Scotty leaned to my ear and whispered, "Why don't you walk down to the lobby." I did. When I came back she was in Scotty's lap drinking from her cup!! I was SO glad to see her drinking!

Her heart was looking good, but she would have to be on HIGH dose aspirin therapy in the following weeks to protect her heart. Finally, she began to look and feel better. We even loaded her up in a wagon a few times and rolled her down to the lobby to see the aquarium. My mom and sister came to see her and Mippi was able to get her to take some bites of a banana- her first bite of food in a week! She couldn't lift her head, but she followed us with her eyes and nibbled her banana if we put it to her mouth. Micah, Sunny, and Mippi made her some colorful decorations to look at which we hung from her crib.

Day four after treatment she was feeling quite perky and spoiled. By then she was having a hard time getting to sleep because we were in the room with her. We ended up rolling her up and down the halls in a hospital bassinet trying to get her to doze off one night. By the time we took her home she was quite spoiled. The only thing she wanted to eat from her hospital trays was the dessert and because we just wanted her to eat- we let her! After five days in the hospital they let us go home.

They told us that if her fever begins to return to bring her back in because some children need two IVIG treatments. Sure enough, the day we got home, here came the fever again. This time it was much lower, but we didn't want to take any chances. We called and they told us to bring her back. She got a second IVIG treatment that night. It was a Sunday and the Infectious Disease specialist was not there so they went ahead and did the treatment anyway. This time they put the iv in her foot- which was SO much better. The next day the specialist told us that she hadn't needed the second treatment . The fever was most likely from a virus that she had picked up from the hospital. She said the second treatment couldn't hurt her and on the contrary it was an immunity booster. So we went home again, this time after two and a half days.

Eliana slowly got better, began walking shortly after, and had a great big growth spurt- gaining 8 pounds in just 3 months!! She completed her high and low dose aspirin therapy and went for her follow up EKG six months later which was normal. On cold mornings her joints seemed a little stiff and sore for awhile. But today she is a healthy girl. We don't see any side affects from her ordeal.

None of our children have ever been sick like that before. We have never even had any one's tonsils out. So we felt helpless and afraid as we had no choice but to put our child's best interest in the hands of the doctors and nurses at the hospital. It is hard to trust strangers who don't even love your child. But they took excellent care of all of us. We are forever grateful to them. We saw many people there whose children were very very sick and we felt humbled and blessed to be going home, after only one week, with a healthy child who was on the mend.

Feeling bad before we knew how sick she was. This was a few days before her first trip to the hospital.

Lying in the ER getting her iv fluids. This was before her lips started to swell and bleed.

During her IVIG treatment. She doesn't even look like herself.

This was taken during the ultra sound of her heart. She was very uncomfortable lying on her back.

Mippi visiting her sweet baby.

Mippi got her to eat some of a banana- her first solid food in a week!

She was starting to feel a little better. Looking at pictures of Bubba and Sissy. She really missed them.
The swelling had started to go down and her mouth finally stopped bleeding.

Looking at the fishies. We were here in the middle of the night a couple of times.

I couldn't believe she would keep her mask on! She wore it for her wagon rides- whenever we left our room.

All better! Here she is healthy and happy a few months after getting out of the hospital.


My little squirrel

The baby of the family sometimes wants to be a big kid like her brother and sister. She has been asking to do school work since she was eighteen months old, so when I ordered our books for this year I added a 2 year old curriculum for her. It came with an arts & crafts and a numbers book. She enjoys having her own box of crayons and work sheets. This squirrel hat is one of her crafts. She colored the tail and I cut out the ears and then she glued them onto the headband. While I was stapling it together she went to her toy basket and dug out this little squirrel doll. She cradled it like she was the mommy squirrel. It was so cute I had to get some pics. We went outside in the crunchy leaves to take some, but Eliana does not like to have her picture taken. She never has. Now that she is old enough to tell us why I understand it is because of the flash, but even when she was just a couple of months old she would always turn her face away from the camera. Now she shakes her head no and says, "light, light" pointing at the flash. But I did manage to get these two. I love how she is holding her baby squirrel so lovingly.


Towel Troubles

For the first few years of our marriage I folded towels by the basketful. Even though it was just my husband and I, and we tried to use the same towel more than once before tossing it into the dirty clothes and grabbing a clean one, it still seemed like I was folding every single one we owned every time I did the wash. Then one day we found the answer to all our towel woes- the terrycloth bath robe! Not just any old terrycloth bath robe, but nice, thick, absorbent ones. We use our robes all week after each shower and then just hang them on a hook to dry for the next use. Each of our kids has their own robe as well. Scotty has mounted hooks in their bathroom and on each of their closet doors in their bedrooms so there is no excuse not to hang up their robe. This has cut the towel usage down to hand towels and wash cloths only. Now bath towels are only used to clean up the occasional spill, dry up the bathroom floor, or for guests. I wash the robes once a week or less and they don't have to be folded. Just hang them back on their hooks. A really good absorbent robe isn't cheap, but we have had ours for years. They hold up and really don't wear out. The kid's robes were $30.00 each from Costco, but we bought them 7 years ago and they are still in great shape! We have just passed them down the line as they grow.

Another issue in our house has been sour towels and robes. Last year one of my kids threw a wet beach towel in their hamper. Since I only wash clothes once a week it was pretty stinky by the time I found it. Their robes were also a little sour from the times they didn't hang them to dry. I washed them a couple of times and they still weren't fresh out of the dryer so I decided I would try bleach- even though it might ruin the look of the brightly colored robes and towel. If bleach freshened them it was better than throwing them out. So I washed them in hot water with about 1/2 cup of bleach. They were as good as new if not slightly faded. They have smelled fresh ever since.
Today I decided to use bleach one more time on a pile of less than fresh dish towels. They are all brightly colored, but again, I'd rather they have bleach spots and be fresh than have to throw them out. They weren't cheap. I can't stand towels that aren't absorbent enough, so I shelled out the extra cost for some really good dish towels. I set the machine on hot water and added my usual detergent as it was filling, along with a scoop of oxy clean and about 1/2 cup of bleach. They all came out smelling lovely, without even a hint of stink, and the bright colors still look as good as new. I guess the bleach is diluted enough not to fade the towels, but still strong enough to kill the mildew or whatever the lingering stink is.

So, for now, my towel troubles are over.


Fabulous fall recipe

A few weeks ago, while waiting at the dentist office, a recipe in a magazine caught my eye. It sounded really good, so I filed it away in my brain. Things have been known to get lost in that filing cabinet, but I managed to remember this one. The recipe was for butternut squash ravioli. My husband stopped by the store for me with a short grocery list and purchased the largest butternut squash I have ever seen. I finally got around to making something with it. Last night I washed it (since my kids had been playing with it like it was a baby doll for a week or so) cut it lenghtwise and then again, making 4 slices. Then I scooped out the seeds and rubbed it with some butter, put it in a glass casserole pan with about an inch of water, and roasted it at 350 degrees for an hour- until it was tender. This was all in preparation for a special fall lunch. It was so tasty I decided to share the recipe.

Butternut Squash Ravioli with butternut squash and basil cream sauce:

"Here's a fun recipe that begins as an afternoon cooking project and ends as a wholesome dinnertime treat. In the kitchen, kids can take turns cutting, filling, and crimping each squash- and cheese-filled pouch. At the table, they'll be introduced to the delicious appeal of freshly made pasta. It's a simple, hands-on lesson that proves good things come in small packages.


2 cups cooked butternut squash
1 tablespoon milk
1/4 cup freshly grated Parmesan
1/4 cup mozzarella
1/8 teaspoon freshly grated nutmeg
salt and pepper

2 cups flour
1/2 teaspoon salt
3 large eggs

remaining squash filling
1/4 c. milk
8 tablespoons (1 stick) butter
1/2 cup water
fresh basil leaves

Blend the squash with the milk, cheese, nutmeg, and salt & pepper until it has a smooth, mashed potato–like consistency. Note: The squash can be prepared a day in advance and refrigerated in an airtight container.

Make the pasta. On a clean work surface, mound the flour and make a well in the center. In a small bowl, use a fork to lightly beat together the salt and the eggs. Carefully pour the egg mixture into the well. Using the fork, gently incorporate the flour into the egg mixture, a small amount at a time. With your hands and a spatula or dough scraper, work the dough until it pulls together into a smooth, pliable ball.
Halve the dough, then form each piece into a 1/2-inch-thick disk. Cover the disks with plastic wrap and set them aside to rest at room temperature for 30 minutes.
Lightly flour your work surface and halve each dough disk. Roll out one of the dough portions as thinly as you can (to about the thickness of a dime), then use a 2½-inch-diameter drinking glass, biscuit cutter, or cookie cutter to cut rounds from the dough. Arrange them in pairs. Repeat with the remaining dough. Each half disk should yield about 7 pairs of dough rounds.
Further thin the dough rounds by pinching them between your thumb and forefinger. Each round should increase in diameter by about 1/4 inch.
Use a pair of dough rounds to make each ravioli. With a pastry brush or your fingertips dipped in water, paint a 1/2-inch perimeter around one of the dough rounds. Spoon 1/2 tablespoon of the squash filling into the center.
After filling the ravioli, press the other round of dough on top of it along the moistened edges. Use the tines of a fork to seal the edges.

Bring two large pots of water to a boil (using two pots allows all the pasta to be cooked at once).

Meanwhile, make the sauce. Melt the butter in a saucepan over medium-high heat with any remaining squash filling. Add milk and stir. Then add water and blend. Add the basil and continue to cook the sauce until it's light brown and has a nutty aroma, about 4 minutes. Remove the sauce from the heat. Remove basil leaves from the sauce.

Line a large plate with paper towels. Add half the ravioli to each pot of boiling water. The pasta will float to the top after 2 or 3 minutes, but continue cooking it until tender, about 15 minutes more (take one out and test its tenderness before draining an entire batch). When the ravioli are done, use a slotted spoon or spatula to scoop them out and transfer them to the paper towels to drain. To serve, place the ravioli on individual plates and drizzle them with sauce. Sprinkle on more Parmesan, if you like. Makes about 30 ravioli."

This recipe got 4 stars in our kitchen. It lost a star cause it's not fast to make, but the kids plates were all but licked clean. This is very tasty!


Smooth Sailing

"Ahoy! I'm sailing! I sail!..." I just love days like today when everything goes smoothly. We have had no school issues, no bad attitudes about assignments, no slow poking, and no texts or phone calls to the principal. It has been a lovely day, so far. Now if we can just make it through chores we will be doing really great!

Not everyday goes this way. In fact, smooth sailing days are rather rare. Some days a storm comes up, rips off our sails, sinks our boat, and we are splashing around in the waves just trying to keep our faces above water until we can make it to shore. But not today. Today, even though the forecast calls for cloudy skies and rain outside, inside it is a beautiful day to home school. All attitudes are sunny and the sea is calm.


Sew many projects, sew little time...

I only have 8 more half rows to go on Micah's quilt. Then all that will be left to finish it is the binding around the edge. I can't believe I am finally going to finish it. My goal is to be done by Thanksgiving. He has waited so long for his quilt. Scotty's Granny turned Eliana's baby blanket over to me to hand quilt for her. She can no longer do it with her shoulder injury. So I vowed to finish what she started to the best of my ability. She did a beautiful job and it is so beautiful now. Hopefully it will turn out okay after I am done with the quilting.

I have a few other sewing projects that are ready and waiting, including a dress for each of my girls and a some really cute stuffed animals. They will be made from a Simplicity pattern that is a replica from one of their vintage patterns from the 1950's. The animals are so cute and it looks like they will be easy to make. I also got a pattern to make a baby doll with clothes for each of my girls. There was a .99 pattern sale at one of my favorite fabric stores so I sort of stocked up on projects for awhile. Sunny will begin learning to sew this year so I got her a simple apron pattern. She is very excited to get busy on that.

When life slows down for us a bit (and the quilts are finished) I will start some of these and post pictures of our progress.


Psalm 118

Some days are hard. My goal is to do my best, but I don't always succeed. Sometimes I get pressed down and depressed. But He always lifts my head again. I am so grateful and thankful that He knows His children. He knows where each one is in this world full of wickedness and sin and His hand is mighty to save. Blessed be The Name of the Creator of heaven and earth!


Graham Crackers

When I offered my toddler a graham cracker she nodded and said, "Graham-mama cracker". How cute is that? (Grandmama is what I call my grandmother) Here is a super delish recipe for

"Graham-mama Crackers":

2 1/2 cups plus 2 tablespoons unbleached pastry flour or unbleached all-purpose flour
1 cup brown sugar, lightly packed
1 teaspoon baking soda
3/4 teaspoon kosher salt
7 tablespoons cold butter, cut into 1-inch cubes
1/3 cup mild-flavored honey, such as clover
5 tablespoons whole milk
2 tablespoons pure vanilla extract

In the bowl of an electric mixer combine the flour, brown sugar, baking soda, and salt. Mix on low to incorporate.
Add the butter and mix on low, until the mixture is the consistency of a coarse meal.

In a small bowl, whisk together the honey, milk, and vanilla extract.
Add to the flour mixture and mix on low until the dough barely comes together. It will be very soft and sticky.

Turn the dough out onto a lightly floured work surface and pat the dough into a rectangle about 1 inch thick. Wrap in plastic and chill until firm, about 2 hours.

Divide the dough in half and return one half to the refrigerator.
Flour the work surface and roll the dough about 1/8 - 1/4 inch thick. It will be sticky, so flour as necessary.
Cut out crackers with pizza cutter. I cut mine into 3X3" squares.
Gather the scraps and add to other half of dough still chilling.
Place the crackers on parchment-lined baking sheets. Chill until firm, about 30 to 45 minutes. Repeat with the second batch of dough and scraps.

Mark a vertical line down the middle of each cracker with the back of a knife. Then prick the dough on each side of the dividing line with a fork.

Bake at 350 degrees for 15-20 minutes, until browned and slightly firm to the touch, rotating the sheets halfway through to ensure even baking. Watch them carefully so that they don't burn.

I had never made crackers before and this was the only recipe I could find that didn't call for special flour like graham or whole wheat. I only had unbleached all purpose on hand that day. So I gave these a try. Make sure you don't roll them out too thin unless you want them to be very, very crunchy. These are a little crunchy, a little chewy, and oh so tasty! I don't know how long they will stay fresh in a zippy bag because they only lasted 2 days in our house. They are so good! I will make these again.
*Update* I did make these again to take on a camping trip and we made s'mores with them. Recommended!! (Also see my homemade kosher marshmallow recipe)