t h e m a y f i l e s is foremost a family blog, chronicling everyday life. Life including natural, healthy eating (with recipes thrown in at random), home educating (with ideas popping up sporadically), an attempt to homestead on .2 acres (with very meager yields), raising 3 of 4 children with a rare genetic disorder, and lots of highly personal family triumphs and failures. You may also find an eclectic array of musings on politics, exercise, sewing, emergency preparedness, backyard chickens, and religion. This blog isn't a campaign to glorify anyone or anything. Just simply a record.


Happy Birthday Nanni!

Things we always want to remember about Callista during her 4th year of life....

....her magical, infectious smile

....how much she loves to do her own hair, and how she loves me to straighten it

....how much I struggle not putting every picture I have of her on our blog, because each one is so animated!

It felt like we rented the entire pool, there was no one there, perfect for her party!

...How she loves to show off for friends, but clings to my leg petrified in unfamiliar situations.

...how every night just about bed time she begins to experience some sort of alarming health issue. Many times it is a sore toe, possible an ear, chin, pinky finger, nostril....you name it and it is very possibly causing debilitating symptoms at bed time.

Enjoying a Russian birthday cake made especially for her by Larisa

....how she loves to please her big sister and mom and dad. She defers to our opinion and idolizes everything from our music, clothes, and makeup to favorite color.

Out to breakfast with Dad for bagels in the morning.

...the priceless way she says "Okay Mommy" so quickly when she discerns I need it the most. (It would be great if it were every time...we're working on it!)

We love you little Nanni. Happy 5th Birthday. You entered this world screaming like a wild baby and didn't stop for nine months. Thank you for learning how to release your energy in other ways. Our home would miss so much life without you!


Homeschool Schedule

Quiet Reading Time (1:20 - 2:20 pm Daily)

Our Home Education Daily Schedule Monday-Thursday

(Condensed version)

5:45 Mom arises for exercise

6:15 Brent and Children Wake up

Get dressed, make bed, do hair, say prayers, brush teeth

6:30 Breakfast

Brent makes and cleans up breakfast

7:00 Piano Practicing

Ellery begins piano practice, and I arrive home about this time. We practice together for 45 minutes. This set block and 1/2 hour break before school starts has worked miracles. Ellery is far more productive with her time, knowing she will have to complete her practicing after school if necessary. Callista reads to Emmett or they just play.

7:45 Children Play/Exercise

Brent takes the children to the park or they ride bikes outside. Mom showers and gets ready, then Brent leaves for work.

8:15 Morning Gathering

9:40 Recess and Snack

10:00 Morning Lessons

12:15 Lunch Recess Clean up, eat lunch, free time, Emmett goes down for nap.

12:50 Afternoon Meeting (see next Monday post)

1:20 Silent Reading

Read quietly using book boxes. Mom has free time :) Wednesday piano lessons and library. Larissa stays until 4:00 pm on Wednesday's for Mom to run errands.

2:20 Quiet Time

Independent quiet time in room with small toy on bed, or listening to stories or music on CD. Mom prepares dinner. Ellery and mom make bread on Mondays, Callista and mom make snacks on Tuesday.

3:10 Free Time

Finish piano if necessary

5:10 Clean up for Dad and Set Table for Dinner

5:20 Dinner and Scriptures

5:50 Clean Up

6:00 Exercise/Play Time

6:40 Baths and Clean Rooms

7:00 In Bed Ellery reads aloud and mom reads aloud. Dad tells a story.

8:30 Lights Out

Fridays we wake up at the same time and piano practice. In the mornings we pleasure read. Then we have field trips for science, the arts, history, physical fitness or family fun. When we return home we do notebook pages and process our learning. If no field trip is planned we will have science lessons/experiments and projects. We then have quiet reading in the afternoons if time permits.

Here are a few snapshots of our first field trip.

We enjoyed reciting Roald Dahl's The Dentist and The Crocodile with our heads in this "massive jaw!"

This week in History we learned about nomads. Ellery drew was fascinated by this mammoth tusk at the BYU museum of Ancient History.

Ellery's notebook page about our visit to the museum.

Callista liked the "red diamonds" of amber.

Callista's notebook page about our visit.

I plan on following this schedule perfectly so please don't ever try to interrupt or throw a kink in my plans. He, he, he... We are actually determined to stick pretty closely. We expect occasional interruptions for Dr. appointments or other family events but those are bound to arise regardless of where and how you choose to educate your children.


Hey There Blue Eyes!

Where did you come from? This is a brown eyed family!

I think it is pretty official, they aren't changing. (Click on the photos and I think you will agree)

You may also take note this little peanut doesn't need oxygen when she is awake anymore! A giant step in the right direction at last. Three cheers for Berks!


Liberated Education

It Begins

We celebrated our first official day of school on Monday. We aren't sure yet what we're calling our little family education experiment, but we are dreaming big. We've spent the last three weeks easing into things, but this week we went official.

As a family, we decided we wanted to have uniforms to help set the tone each day. The girls chose three little outfits, which they can mix and match everyday, and lay out at night. This has relieved so many headaches and saved so much time (they are 100% polyester, so the precious little pleats are perennial).

I have been reading like a mad woman for the last 7 months preparing our philosophy for education, and assuring myself this is the correct route for our family. Nothing clouds my vision right now of the amazing possibilities this path holds for us.

An Ending

Last week I met with the wonderful principal of our elementary school. It was bittersweet. I have a great deal of respect for him, and the vision he has for the school. Ellery was assigned to a remarkably excellent teacher this year. But this doesn't sway my feelings. As I shared with him the news that our chosen course would not be including the school this year, he was both sensitive and kind.

My heart will always have a spot for public schools which I both attended and taught at. But I feel I can give my children so much more than what I was offered, or what I offered to my students. Even the most dedicated principals and teachers work within the constraints of the system. They are locked into budget crises, overcrowded classrooms, tenured teachers and mandated curriculum and tests.

We are headed a different direction. I don't see our relationship with the elementary school or public schools slamming shut. It is a neighborhood center for community and with the principals encouragement we will stay connected and involved through choir, family activities, orchestra etc. He also wants to meet periodically and share our experiences. We share a passion for excellence in education and he is intrigued where our studies will take us.

An Additional Offering

I couldn't be more pleased with how things are going in our own little family school. A fantastic addition to our curriculum this year is Larisa. She is our tutor from Russia. She has been with us for the last month. Two days a week Larisa comes to speak Russian with the children, immersing them in the ideas and culture of something completely foreign: the language of Tolstoy and Solzenhitsyn and the music of Tchaikovsky. (Okay they aren't reading War and Peace yet, but like I said, we dream big!) Larisa's time with us also allows me some one on one time with each child, where we focus on intensive phonics instruction.

Next year we may find someone from Latin America to tutor the children and spend time in our home. Or maybe we will fall in love with Russian and just keep learning. The possibilities are endless.

My initial thoughts

Amazing. I love this time with my children. I can't describe it, but our interactions are so different during school than from our day to day life. Different in an enriching and edifying way. I can't think of a better way to spend my time. And believe me, this takes a lot of it.

This week once...

...Callista stared off into space today as I was trying to review phonograms with her and my heart just leapt with excitement. She gets away with that for a few seconds in our school. In a classroom I fear that wouldn't be the case.

...Ellery and I played a game from Family Math, we laughed as I kept beating her, but I exulted inside as she caught on to my strategies and worked the mental math independently to see how I kept it up. (More on my altered math scope and sequence later.)

...we danced a "polka dotted polka and a tangled tango too" giggling and learning about alliteration all the whilst reciting Mrs. Mitchell's Underwear by Dennis Lee.

...Emmett came up to me saying "arbose" over and over again. "Moui arbose." He wanted his watermelon. In Russian. I don't know if he had a clue what he was saying but he was saying it. (My Russian spelling is wretched, completely phonetical, I apologize.)

...the girls screamed in horror as I tried to stop reading The Magician's Nephew by C.S. Lewis. (Okay this happened more than once, everyday in fact.) They converge on me every time I sit to nurse the baby, book in hand. He is a masterful author, who has captivated their little minds. We finished the book in 4 days. I have a feeling the Chronicles won't take too long to devour.

I have so much I want to put on record about this adventure. Be prepared.


? More Questions ?

You are looking at a 9 lb 10 oz bundle of trouble.

Today at her doctors appointment she was clearly unready to be weaned from her oxygen. The doctor wrote a devastatingly, dramatic letter concerning the woeful condition of Berkeley's health the last 3 months and as a result 2 hours later our insurance delivered a pulse oximeter for our home. One to three months was the doctors prescription. Longer if needed. Will I really have a child crawling with oxygen?

When I tested Berkeleys saturation levels she was between 88% and 94%. It was pretty much deja vu from 3 weeks ago. My heart sunk decidedly in my chest as I fought off a break down. I thought certainly we would see some improvement.

I will probably check her for a couple hours a day until we see the pulmonologist in a week. This way I will have a solid idea of her daily sats. After that, it seems like once a week will be enough. Clearly we aren't seeing a rapid recovery.

I was put in charge of her weaning process. We don't see the pediatrician for 2 months.

I have so many question and so few answers.


A Milestone for Callista

This moment has been far too long in coming. Daddy was gone this morning for a couple hours and I took it upon myself to get Callista riding. We borrowed our neighbors tiny bike to get her going. Within minutes she could do it. Then it was a simple matter of transitioning her onto her own bike, which only took a couple more minutes.

For some reason she has been petrified of this for a year. But today was the day, and like always she did it with gusto! Way to go Callista. We are so proud of you.

The impetus of all this, was our little next door neighbor Cy, who is three just started riding. If he could do it, I knew Callista could too!


Have I Mentioned...

This morning you would have found me pruning rose bushes...

... while holding a baby and maneuvering an oxygen cord.

Or that I allowed Ellery to take pictures with my camera...

Or that Berkeley is getting little rolls on her arms and legs, not unlike the little hippo you see on her onesie...

Or that she is a fountain of spit up, with a dangerously "old man" hairline....

Or that she gives the most delicious smiles, for no reason at all...

Well, now I have.


Growing Up

Ellery wrote, memorized, and delivered this talk on Sunday. She did a beautiful job. It was fun to have her experience writing her own talk.

I’ve been asked to talk on, when Jesus heals the sick. And I have some pictures to help me to tell a story.

One day a man named Jarius, a ruler of the Jews, fell at the Savior’s feet. He said that his 12 year old daughter had been very ill. He begged Jesus to come heal her, and since he had enough faith, he knew Jesus could heal her.

Jesus said, “Since you have enough faith, I can heal your daughter.” So Jesus started following Jarius home. But on the way, he stopped to heal another woman.

Jarius was probably really worried about his daughter. When Jesus was talking to the lady, someone ran to tell Jarius that his daughter was dead. Jarius was so sad.

When Jesus heard these things, he said: “Don’t be worried. Since you have enough faith I will heal your daughter.” They went to Jarius‘ house. When he got there he saw a lot of people crying because of the child’s death.

Jesus said “Don’t cry, she is not dead she is in the sleep of heaven.” The people laughed at him and teased him, because they thought he could not heal her.

Jesus told everyone to go out of the room except for Jarius, Jarius‘ wife, and his disciples. They went into where the child was lying. Jesus told the child to rise. She rose and walked.

He told Jarius and Jarius‘ wife to give her something to eat, because she probably wasn’t feeling good still.

Now I will tell a scripture about this story. In 2 Nephi 27:23 Jesus says.

“For behold, I am God. And I am a God of miracles. And I will show unto the world that I am the same yesterday, today and forever. And I work not among the children of men, save it be according to their faith.”

This means that Jesus can still do miracles because of peoples faith.

Now when I was a baby, when I was born I was dead, like Jarius‘ daughter. Because of everyones faith, I was healed. And when my little sister Berkeley was born, she wasn’t dead, but was very ill. Because of everyones faith, her sisters, and brothers, mom, and dad, grandma and grandpa, and friends, she is being healed.

I know Jesus can still do miracles. In the name of Jesus Christ amen.

Here is a clip of one of the practice run throughs. We couldn't get a full talk recorded without chaos in the background. Such is life with four children. You can see it takes quite a bit of coaching to get a smooth talk :)

I had tried to encourage Ellery to use an outline with bullet points, or to have her talk in front of her. The bullet points idea was overwhelming, and the temptation to just read her talk was too much, when she had it in her hands. She was most comfortable just memorizing.


Glitter Street

Speaking of toe nails...

There are so many reasons we love our street. A big one is our neighbors. Jessica is our big sister, and we love her mom Jill as well. She keeps all our hair looking fabulous, and is a good friend to top it off. The girls were ecstatic when she requested to practice "glitter toes" on them. Here are the photos of their experience.

Callista in aquamarine.

Ellery in "Summer Wine"
Emmett, thinking he is one of the bunch.


Keeping Me Smiling

Callista: Mom look! There's a toe nail.
Me: What?
Callista: Mom, up in the sky a toe nail.

She said this while pointing to the crescent moon.

A few hours later.

Callista: Mom, the toe nail is glowing now! Cool.

Callista: Mom, if Uncle Derald married Hannah Montana, she would be my aunt. That would be weird.

Uncle Derald ate in the same restaurant as Miley Cyrus and Callista thinks surely they must have fallen in love.

It's 11:03 pm, Callista is lying on the bed next to me (she fell asleep during quiet time). I turn out the light and begin to hear protracted breathing and wait for her idiosyncratic, deep guttural snoring...And then

Callista: Mom. Why do we have chins?

After the initial shock that she was still awake wore off...

Me: Well our chin is part of our mandible or jaw bone. Without our mandible we wouldn't be able to chew.
Callista: Okay.

Moments later guttural snoring begins.



Berkeley had her visit to PCMC yesterday. She saw the ENT. Her ears are still full of fluid. In one month they will check again, and if they are still full, they want to insert tubes to prevent speech delays. They also did a nasal biopsy so they can rule out PCD. The results will take a couple weeks. The doctor was quite certain the children do not have it. They also did a follow up chest x-ray to be certain all the pneumonia had resolved. It had. So why the oxygen? Her pediatricians latest diagnosis is that she has chronic pulmonary lung disease. In a nut shell, it means her lungs were damaged in the first couple weeks of life, now we are waiting for them to heal. It takes months to years.

I am not certain about this diagnosis. This is something which happens to extremely premature, low birth-weight babies, usually intubated for extended periods. I just don't think Berkeley fits the bill.

The ENT meanwhile, had no other possible explanations of the coughing, at least none that fit my perception of the childrens symptoms. I asked him how to tell if the cough is caused by dripping from the sinuses or is coming from the lungs. He said there is no way. That was frustrating. I'm not sure how to put this behind me until I know their lungs are safe. Most likely they are, but I don't have that peaceful certainty yet. The ENT did recommend the children see the Immunologist. Ellery has already been screened for immunodeficiencies, but he felt further investigation may be helpful. So I guess we will try that route as well.

Maybe the pulmonologist will have some more answers.


A Date with Uncle D

A major summer highlight for these little girls was an afternoon spent at the water park with their uncle Derald. He is fresh back from spending the summer galavanting around Malibu. This includes a stint on a game show. (We'll let you know when it airs!)

I need to provide more opportunities like this for them.


Another Hypothesis

After a long heart to heart with my pediatrician last week, he gave me reason to believe my children might actually be suffering from severe allergies. He felt confident the cough is caused by a post nasal drip, and not from fluid in the lungs. This would be a wonderful diagnosis for several reasons. It would mean the coughing is not damaging to their lungs and that there might actually be some treatment available.

Ellery has been tested for allergies, but the pediatrician said their are more accurate tests she has not had. We will go see an allergist in the next couple of months. While neither Brent nor I suffer from allergies, we both have parents and siblings who suffer greatly. And I may have mild allergies. When I was an infant I was hospitalized for allergies and as a young girl, the doctors said I had an "allergy nose." (I guess this is when you constantly wipe your nose by pushing it upwards. You end up with a line on your nose.) But I would never consider myself suffering from allergies.

I have always been so skeptical of allergies because my children's symptoms are so consistent and began at the moment they were born. They do not change with season, location, inside or outside, time of day etc. I guess they could just be allergic to life in general? Emmett does suffer from eczema, which is an autoimmune reaction similar to allergies. Allergies would by far be the more common explanation. I have been given renewed hope that this might be the explanation.

We have taken measure to prevent allergic conditions. We have an extremely sensitive and aggressive, air filter we run 24 hours a day in our home. This is a sacrifice for me, because it is loud and really ugly. They are most commonly used in doctors offices or in smoking homes. We have carpet in only 3 rooms in our house, and it was replaced 6 months ago. We don't have cockroaches (disgusting I know, but they are a major cause of perennial allergies). Do the hospitals have cockroaches and dust mites that they children were exposed to upon birth? Ellery has also been treated with inhaled steroids, decongestants, saline, bronchodilators with no improvement.

I had hoped this weekend we could eventually wean Berkeley off the oxygen, but she seems to still need 1/4 of a liter to keep her sats in the high nineties. We will see what her pediatrician says tomorrow. This is a hard one for me. I think I need to get rid of this oxygen monitor though. It isn't good for my sleep or mental health. I can't find a darn thing on the internet about why a 2 month old, with mature lungs, born 2 days before full term, would need supplemental oxygen.


Baffled Again

This little angel continues to baffle both myself and the doctors. She lasted about long enough to snap this photo on her room air test yesterday. At the doctors office she was looking great for about 10 minutes, so her doctor ordered a pulse oxymeter for us to monitor her at home for 12 hours. I was ultra confident she would breeze through, no problems. She was on her way to desat after only a half and hour. I wondered if maybe it was a fluke. We put her back on her oxygen for an hour and then I tried again. The same thing happened. I even tried once more during the night with the same results.

I kept the monitor on through the night to find her optimum oxygen level, since it has just been guess work since we left the hospital a month ago. She is comfy on 1/8 of a liter (between 90-96%), but nothing less.

(You and I would have an oxygen saturation in the high nineties to one hundred percent. Low nineties is okay, under ninety is troublesome for prolonged periods.)

I know her lungs are mature, so I just wonder what is going on. She is a plump 8 lbs 6 oz, in the 25 percentile for weight, 50th percentile for height at 21 inches. So why is it that she can't seem to get enough oxygen to those lungs?

Post Note (9 pm): Berkeley's home nurse visited today. One of the perks of having such a rough start is the monthly visits of an RN. The visits check growth and development. I love the free access to a nurse! I was discussing the oxygen situation. She had some insight for me. She said it is an extremely drastic change to go from 1/4 liter to room air. She found that very unusual. It is difficult for the baby to adjust to such a change so quickly. She felt like that could have been the major factor in her difficulties. Her recommendation was to keep the monitor as long as possible and to slowly wean down her dose. Sure enough, after being on 1/8 liter for 24 hours she began having much higher saturations. She is currently on 1/16 liter and is stable so far. This was a very comforting developing. Sometimes I think nurses know a lot more than doctors.




Have I mentioned how convenient and portable it is to have a child on oxygen?

Thankfully we do have portable tanks. I shouldn't complain. Berkeley's big outings are only walking to swimming lessons and the doctor. Wednesday marks another doctors appointment. She is getting so big and beautiful and strong. It is hard to prevent her from her own "room air tests." She rips her canula out any moment she can. I am hopeful this is the visit we will be done!